Struggles

We all have them.

I had a perfect childhood.   I would not change a thing.  Most things came really easy to me, and I worked hard for things that were important to me (schoolwork).

My mom got sick when I was 17 and those years were a struggle.  It was a bonding experience too.  It is hard to explain unless you  have been there.  We were so close even before she was sick, and I do miss her so so so so so much.

Now I am a mom.  I would not give up my kids to have my mom back.  That is hard to say.  Prior to having kids, I would have given anything for my mom back, anything/anyone.  My kids are my life now, and it is not an easy life.  You want to guide them to be the best they can be, support them, push them along, and make sure they are happy, all while fighting apraxia.  It is so difficult.  We will get through it.  I know that.  They will speak.  I will be proud and God willing, I will get some time to myself when my kids are grown, to travel, volunteer, and spend my time as I wish.


My cousin is in jail right now.  She has been fighting a drug addiction for a long time.  She has had struggles, but had turned to drugs to mask the pain.  I went to see her last night with my sister.  I am overwhelmed in my own life, but offered to and I do mean it, help in any way I can, anyway.  I will be there for her.  I love her.  Family is everything to me.  We can all do what we can do to help make the world a better place.  For me, I try to inspire and support others.  I am not perfect, nor is my life, but I have been blessed with good coping strategies and a mom who showed me how to die with dignity and grace.  Those lessons will serve me for a lifetime.  Point of this post?  Not sure.  We all struggle.  We all hurt for something, and some times it is in a cycle, so maybe the pain I have is now, but it won't last forever.  I do know that God heals all wounds, and it is only through Him, that pain turns into joy.


Happy New Year everyone...

Where are all the other kids who don't talk???

I am an SLP.  I know more about disordered speech than typical.  I work in an extremely poor school.  We always joke at school that someone will say this kid is really smart and we really mean "average intelligence."  So many of our kids are low.  So so so many.  We took the boys to a mall indoor play area today.  They love it.  I notice none of the other parents even get up.  They sit in the cushy seats surrounding the play area and they let their kids go at it.  I end up with every kid around me, asking for help, joining in our ring around the rosie game, looking to me for praise, and I am so pissed at these parents.  They are leisurely drinking their coffees and I am sweating, out there playing with my kids.  Alex tells me to balance it which I need to work on, so going out for a bit, then watching, but it is so hard to send your kids out there who can't be understood by others.  Landon was chasing this little boy and then they were pushing each other on the slide.  The boy was very verbal, but he pushed Landon one time, so hard that he almost fell down the stairs.  Poor baby burst into tears and it took 2 minutes before the mother came out and then put her child in time out.  I look around and I don't see any kids who can't speak.  I see not one.  I saw kids less than Logan speaking.  Where the hell are all these kids?  I know speech delays are common, I get that apraxia is not, but are these kids hidden?  Do people not take them out?  Ugh.  I am always looking around, trying to find another kid like us, so we are not so alone :(

Questions

The kids have been busy, out at Christmas parties or visiting friends on the 24, 25, 26, and 27.  Today, I promised them it would be more low key.  They overall were very good.  Landon understands Christmas.  We read a ton of Christmas books, and he even let me read most of the "Night before Christmas" on Christmas eve to him.  He does better seeing something the first time and knowing what to expect maybe.  Like breakfast with Santa. He was ok there, but then the next week, at church, he was trying to get back in there.  maybe he was thinking, I will know what to do now and sit with Santa longer, whatever. Who knows.  He refused to open most gifts.  It's funny because he opened them last year with me (sat on my lap fine), but now he prefers to do things on his own, and maybe he knew he could not, combined with all the pressure and people watching him.  He has enjoyed playing with a lot of his new toys.  Christmas day just felt overwhelming, but he was very good on Christmas Eve.  A little at a time.  what I did notice is the constant questions.  I always put myself in his shoes and I was shocked by how many questions people asked him.  Examples:
How old are you?
What's that?
What does a duck say?
What did Santa Bring you?

He shuts down in situations like this.  Why does no one ever say. Which animal says "baa" or "show me your book."  Everything is expressive.  I was overwhelmed for him.  At one party, he was berated with questions and it was just too much.

Logan like ripping the wrapping paper off and is doing so well in many areas.  I actually have seen nice improvement with Logi since he has been home with me for a week and I am working with him.  I have more to write, but no time right now.

I will write more soon.  just been thinking of the questions and pressure!

Kim

in 2014

In 2014, with a lot of hard work!!,

Landon has learned to:


-use a spoon
-use a hand to stabilize something to pull on it
-beginning to turn wrist
-enjoy painting for a short period of time
-sign more words
-jump with 2 feet
-jump forward
-nod his head yes
-blow kisses
-take bites of bigger items, like strips
-use incredibly novel ways to communicate
-climb a ladder
-climb a rock climbing wall
-go on the slide on his belly
-follow 2-step directions that are not novel
-understand pretty much everything I say to him
-transition easier
-understands first then, or countdown
-wait his turn with some support
-share with a prompt
-love his brother
-identify more body parts
-shapes, numbers, colors, letters
-increase his consonant inventory
-attempt to imitate
-kick a ball lightly
-ride a trike with help (he can keep his body on but not pedal)
-speak more words on a daily basis
-prompt his own face for sounds
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in 2015, I just want him to talk.  I am sure in 2016 I will have more prayers that may be more academic or worried about Kindergarten.  Right now, i know if he can talk, he can get a job doing something.  He will be less frustrated.  It will be easier to learn and do other skills because he can share with me what he needs to do something.  I just want him to talk.  I will give, barter, trade anything for my perfect boy to talk.  That is the prayer again as we enter 2015 and for Logan,  I just want him to point and begin to talk.  I still can't believe I have two kids with this. It is not fair.  I just want them to be happy and feel good about themselves.

Dear God, please, please, please, help my babies to talk, to speak, to share their words and thoughts.  To God be all the Glory,  Amen.

Rare

My friend, Laura, posted about how rare it is to be truly globally apraxic.  I had heard of apraxia in my studies to be an SLP, but it was not covered much at all.  I remember: lots of repetition,backward chaining, and motor planning.  That is it, and it is very serious, you won't see it much.  Then I have treated kids with it, but typically more like phonologically processes when they get to me.  I have a little kid with DS now that is pretty much nonverbal that I am using a lot of the tactile cues with, and she is starting to imitate.  Parents are thrilled, so motor planning is tough, but can move along.  Then, yes, it is in the whole body.

What does that mean?

It's the same as speech kind of: tons of repetition.  If you don't work on a skill or use it, it is lost.  It can be gone so fast.  So annoying and so much work.


I see global apraxia all the time with my son.

We sing a lot, because then his body is prepared that it has to respond and it knows when.  If I say what's on your shirt, he can't motor plan to look down and touch his shirt, but if we sing "row row, and if i end, if you see your shirt...." he easily touches his shirt.  The motor plan needs to be triggered because he cannot initiate.  That's how I check what he understands.  I sang that song yesterday a lot: for the christmas tree, pajamas, something red, whatever. It seems easier for him.  I try to fade it and he is getting better at his body parts without a song involved.


When we do "my turn, your turn," maybe 2/6 times Landon can point to himself to say it's his turn.  Other times, he is just frozen.  I cue his little hand and he points to himself.  He cannot initiate the movement.


When he first learned to stand up from the ground, i had to cue his body into position, then he could stand up.  I did this every single thing I saw him try to stand up for about 2 weeks, then he had the motor plan down.

With kicking, now he can lift his leg, but it just hangs there. He can't move it forward without being cued.


All this is global apraxia.   Landon does get things with repetition.  He is doing much better in so many areas now.  It is a lot of extra work for me and obviously a ton for him.  So much work.  So hard for him.  It is not fair, not fair at all.   We just keep on keeping on.  Play skills are the hardest.  Take all these individual skills and mush them into a sequence of moves. ugh. it's killer.

Keep working, sweet boy.  You inspire me to keep working so hard for you too.  Love you <3momma

Delayed

"Logan is delayed"

This is what I heard this AM about 9:20 during Logan's physical therapy session.  We have a snowday so the therapist came here.  2 others were cancelled (Landon music tx, Logan teacher).  Logan is 19 months old.  He has said words such as hi, aw/alldone, yea, mama, and maybe that is it.  I get it, he is behind.  He cannot point or isolate his index finger yet.  He has trouble lifting his arms when he wants to.  However, he copies everything he sees that he can.  He can do the stairs without holding on pretty much, he tries to jump, he climbs everything, and did I mention how he puts blankets on his head to play peekaboo, gives the best hugs, and can follow simple instruction, like kiss me, put it in. So, the PT this AM looks at me and says, "he is delayed."  I am sorry, but I think of delay like he is not walking at all, or on a gtube.  He has motor planning difficulties.  Things will take him longer, I get it.  He was engaged with reading something with me and she pulled him back and made him step over her leg to get back to me.  He threw himself on the ground.  She said "look- he can't do it."  I said "he just wanted to be over here, not pulled back."  Annoyed.  Give kids a break.


Even Landon. Yes, I guess he is "delayed."  He is still amazing, perfect, smart, happy, and he makes me so proud.  So does Logi.  At the next meeting, they better watch out, because this mama bear is getting a little ticked with looking for faults all the time. How about we try to find things our kids are good at for once???

Developmental Pediatrician

Over the summer one day after the horrible CPSE report was received and I was feeling some pressure, I called and referred Landon to Upstate Pediatric Development/Genetics and asked for Dr. Dosa; 1) I like to see females 2) I had her she was kind and listened to parents.  They sent a self addressed stamp envelope and I had to fill out a huge packet on Landon.  My little envelope they sent would not open, so I had to send my own and I called at least 5x this summer because it got lost somewhere in the hospital mail, but one day, I got a letter saying he was accepted and had an appt on 12/8 at 9:15.  The way my brain works is such, ok, that is three months from the day he starts school, I will take him if I need to.  I have since subsequently filled out paperwork for Logan as well and he has an appt on 2/23/15.  Landon hates doctors, so I always feel bad.  We parked at the hospital parking garage and he was whiny.  We have been to this hospital twice now, to see my dad, and to see Aunt Loo Loo.  We were going neither spot and he knew it. We got into the office, they took his height and weight with not much struggle, a little more difficult time getting his heart beat, but he did it.  I brought a bunch of toys and books and we waited.  The doctor entered; Landon shook her head and was pleasant.  He touched her head how he does to acknowledge people.  She was patient from the start.  She read through old records, had at least 50 questions for me, and acknowledged what I am doing for now.  She said: "There is nothing more you can do."  "He needs time."  We discussed his early difficult getting on solid foods as a precursor for apraxia, as well as a hard time feeding himself, and low tone, and really, everything led me to here.  Landon was about 15-16 months and I said to the other SLP at my building, Landon can't say "up." I don't know why I focused on that word, but I did. She gave me more ideas and off I went working with him.  A few months later, I realized he can't say up and everything became "dah."  He was whole hand pointing and he would say a word once. I remember at 17 months, he said "Water" clear as day as he asked for it, but I have never heard it again.  Anyways, Dr. Dosa listened.  She is a mom of a child with special needs and kind of teared up as she told me "You did nothing wrong. Look at him- he is so healthy, happy, and making progress. You are doing everything right."  So nice to hear.  She had him run, kick, jump, squat, she watched him do some fine motor tasks and listened to him speak.  At the end, she diagnosed him with : verbal dyspraxia, developmental coordination disorder, and mild generalized hypotonia.   She said he does not fall on the ASD spectrum at this time because he has intentional communication, and has since forever, is social with anyone who understands him, has great receptive language, and any deficits can be characterized under the "dyspraxia" label.  She told me he will be in a whole different spot in 2 years.  She recommended increasing the speech and getting a 1:1 aide.  I felt supported.  I felt like someone looked at Landon and got him and didn't just start judging because he can't speak well.  And so we continue on, but I have a paper now that can help me get the services he needs.


It was a hard day, but so much better than I expected, due to one doctor taking time to listen to a mom who aches for my children to just catch up, and I know she saw that.

"it looks hard"

I have a few thoughts today.

Thanksgiving, my kids did ok.  They got there a little late, but weren't upset coming in or unhappy.  Landon begged for the phone, but so did a lot of the kids there since eventually we kind of ran out of stuff to do.  There was a mini carnival, which was hard of course.  My sister has 2 kids, one is just a newborn.  Her oldest is typical typical typical, advanced really, and he's easy.  He is mild mannered and laid back naturally.  My brother in law is a quiet guy.  He is pretty easy going too.  He had a lot of questions about apraxia on Thanksgiving.  When will Landon hit his stride? When will it get easier for Landon to speak? Do I think Logi is more severe or less? Then he just said something probably honest and said "it looks hard."  He didn't mean apraxia specifically, but he meant parenting the two kids I have, looks hard.  I actually think any 2 kids 18 months apart would be very difficult, but yes, this is hard.  it's hard for many reasons, most of which you all know.  Interesting to hear something from an outsider.


I am busy cleaning cleaning cleaning.  We have to move. When?  I do not know, but we have to go.  It's scary, because It will all fall on me obviously, and I will be the one deciding where to next.  We can't stay in the school system we are in.  Very sad.  I had planned for my boys to go to private school, so it didn't matter where we lived, but now, living in the city, they won't get the attention they will both need.  boo.  I have no money for a new house.  I think we will need to list within the year,but I am already starting to get rid of stuff and organize, for my sanity.



Logi has another OT eval coming up I requested.  Landon is doing great with speech.  Needs more help sensory wise, but hopefully that'll improve.  Life keeps going.

Thoughts

I spend a lot of time reading other people's thoughts.  I read other blogs and think that sounds just like me, or feel like I could have written that also.  My friend, Kate, has a great blog @ www.findingcoopersvoice.com  She is honest and true.  Her little guy, Cooper, has so many strengths that I can see, and I am sure the hardest part is the nonverbal part.  He has ASD in addition to apraxia.  Today she wrote about choosing him no matter what.  I was crying when I read the last paragraph.   I feel exactly the same way.  Is time flying by here? no.  Both my kids are delayed, both are frustrated, and it sucks.  Am I  missing out?  Probably, but I know no different.  It's life here.  Will they be ok? yes. What does ok look like?  I am not sure yet.

Would I choose Landon knowing this is the path we are taking?  1000000000% yes.  He is just supposed to be mine.  He gets me.  it's hard to understand, but I get him.  I am positive he was made just for me.  We actually have a lot in common, and I am sure we will be good friends when he is an adult.


What about Logan?  Would I pick him too?  Absolutely. how could you say no?  I did think Logi was going to be ok, but the damn motor planning sneaks up on you fast.  I am getting more sad about him, thinking I thought he would be a good example for Landon, but instead, they will understand each other more. He brings out a lot of good in Landon too and he is so social and less held back by his circumstances.  I would pick him too.  I love that crazy hair, little face, great kisses, happy personality.  I love that little boy.

This is a hard life.  The days are so long here.  My boys need me and I have to keep going for them, keep fighting for them, and I have to move them along.  Lots of work to do.


But when you see their smiles and faces, you think to yourself, how could this ever be wrong. How could it ever be anything than this?  and I don't know, to me, those boys are all I will ever need.


xo

1 quarter down

Landon is 1/4 through the school year.  We had a meeting/conference today with everyone who works with him.  I would say it went well.  In general, the staff was pretty laid back, some side convos, laughing, but it maintained positive.  

Positives:
1) speech- doing great.  attempting approximations.  Getting closer to the words.  At times, refuses to use PECs and wants to speak.  Does better in small group/in speech.  Up to 8 consonants now.

2) He is happy- runs into school, works hard, tries his best.

3) He is beginning to show more independence with riding the trike, doing gross motor, and participated in yoga even for 5 minutes today.

4)best laugh and smile around

5) Using spoon well

6) attends to circle time.

7)is doing art projects without being brought over there'

8) can id name in print given choice of 2

Things to work on:
1) play skills.  needs adult support to try new play schemes, can't sequence them.

2) still can't turn knob

3) some sensory seeking continues

4) will play near kids, but not approach them

5) does not maintain play at areas for long enough

6) when asked to sort colors, puts them in the wrong boxes on purpose, then laughs

7)in class, does not speak much.


They are asking for a 1:1 for him next year, especially since he only has one more year before K.  He will be in a full day class next year:  845-230 daily, with speech 5x per week, OT 3x, PT 2x, music therapy 2x.


I will write more soon!

What do I do

with my husband's comments constantly?  He is so critical of me and anything I do with the kids.  Lately it has gotten to where he says he doesn't trust me with them, I don't think about their safety, and I should know what to do since he works with older kids.  Today as usual at lunch, he is sulking.  I ask what's up?  He says I can't wait till they just eat on their own, whatever we give them.  Landon has actually gotten really good with his spoon, but sometimes he resorts back to his fingers.  I try to hold the bowl for him since he can't steady it and he feels better.  Alex remarks to him- that's what your other hand is for, buddy, but in a sarcastic way.  I wish Landon could say "I don't know how to use my two hands together, you idiot," but Landon accepts the help and continues on.  Then he tends to look closely at some things lately.  I think this is visual processing/sensory wise, but of course, Alex says, "ok, Landon, now that's just weird" and gets upset at him.  I just asked him, are you even happy at all? He says Kim, you are not happy, and I feel like I am as happy as I can be right now, but if I had a spouse who was supportive of my kids and not critical of me, I could handle all this better.

Then his thing is whenever we talk about a 3rd kid, that New York state can't afford all the services the 3rd kid will need :( :(

holidays schmolidays

Here comes the holiday season.  Prior to having kids, there was a bad part of holidays with missing my mom and so many changes.  My family and I tried our best and embraced a lot of what we could to make the days special.  There is so much hype on holidays, when really it is the regular day stuff that matters.  I see my nephew(s) a few times a week and those are the memories my kids will remember, not that we went to someone's house for a meal on Thanksgiving.  Hopefully my kids can participate in some of the game nights we will have, play sports with my nephews, and we do a lot of seasonal activities together.  That is my hope.

For this season,  I am not into it.  I was glad when my sister said to have the holidays be low key this year and more about just us.  I was happy with that.  I know Nicky will be more into the presents than my kids and I just want to move past all of that, into other things the kids can do together.

Tomorrow is Thanksgiving.

Last year on Thanksgiving, Landon played well with the kids and overall, we had a great day.  Tomorrow, he still doesn't talk much.  Each morning when we wake up, I pray for him to say "hi." And when the first bits of jargon or closed mouth speech start, I know we have another day of fighting this crap.  What does it have to do with the holidays?  I don't want to remember whining or sadness or frustration on holidays.  I don't want to have to have looks saying why doesn't he talk or use a fork or whatever. My own family gets it, mostly my sister, but the extended people really don't.

I am thankful for my boys and for God trusting me to be their mom.  I am praying that by NEXT year, we are in a much better place.  (These pictures are from last Thanksgiving!)

Such hard workers

Things come easily to most people I meet.  I see kids everywhere speaking well, even kids living in poverty.  Somehow Logan is already the only kid at his daycare who can't wave on demand, at 18 months.  Craziness.  Where are all the other kids with delays?  Where are they all hiding?  My boys handle their delays differently.

Landon is frustrated.  He tends to try to get out of situations he can't do.  Since he was about 15 months, he was frustrated and would cry if he could not do something.  He has gotten much better with trying, but needs me there for him to try.  I am proud that he tries.  I am so proud of that boy.  So proud.  He is working on staying in prone for longer (laying on his belly).  I guess he can get up to 15 seconds, then fatigues.  Last year, this time, he could only do 5 seconds.  His little core can't take much longer yet, but he will try it. 

Logan is working on pointing.  I think he is months away, but I need him to point so he can show what he knows.  He will follow directions like go to the bath, go downstairs, go find Landon, but can't do where is your  belly, give mommy the dog (requires more motor planning).  The SLP yesterday told me that logan's personality hides his delays.  Annoying.  He is just a baby still. 

I think half these people forget that my kids have been in Early Interventions since 10 months.

Between all the evals and service providers and different supervisors, we have seen a good number of professionals:
PTs: 5
SLPs: 9
OTs: 8
Special Ed teachers: 6

Everyone says different things.  I have heard everything from working on social skills, too friendly, copies his brother, motor planning, lack of interest, low tone, choosing not to talk, etc.  I have heard so much crap. It's exhausting.  I think the new people forget that Landon has been in therapy for 2 years. They say things I already know or have heard.  Wish there was a file circulating with all the comments, so I don't hear the same ones. 

We continue on.  The boys are working hard and doing the best they can.  So are we as parents. We are trying the best we can.

A puzzle

I hear that a lot- your son is a puzzle.  Sucks.  Is there no one else like him?  Can't someone actually go research global apraxia and have an idea what he is going through?  Today his note from school said "working on getting Landon to attend and participate in circle.  He loves the music but won't perform the action.  We are working on just one instead of the two steps like tapping his knees and head, he would just do one."  I want to go off saying.... even ONE of those is next to impossible for him.  He can't identify body parts on himself and can't quickly just do those motions.  I imagine he is frustrated, but i am frustrated too.  I feel like no one gets him still.  I have a meeting on 12/2 and I will do my best to explain things.  I need to get some research articles to bring or something.  global apraxia is debilitating in many ways.  He is locked inside himself.

The other side of the table

Sometimes I hate my job.  I know too  much, see too much, understand the impacts too much.  Then there are days that I feel like that enables me to do both parts of my life better. 

This past Tuesday, we had parent teacher conferences at school.  I am in a very, very low income school, with a heavy Hispanic population.  Most of my kids have no opportunity aside from what we provide.  I have 6 kids with Autism on my caseload, none of whom have apraxia, and then I have 2 kids with Apraxia also.  I had most of my meetings Tuesday for my K and my 2 2nd graders with ASD. I was able to emphatize with all of them more than I ever have before.  There is a new boy in K who just arrived from Puerto Rico.  He has an ASD and is nonverbal.  In addition, he really makes no eye contact, does not point, or mimic, or engage really at all.  He is almost 6.  The mom just moved here from PR looking for better.  Are we better? Not sure, but I felt for her.  She was crying at the meeting, saying she just wants him to talk.  I told her I get that and we will work very hard for him to learn to communicate, but obviously, he has to start at the pre verbal stage. 

Another parent of my favorite kiddo ever came.  He was nonverbal at age 5 and now I have to tell him all the time to be quiet, take his turn, wait to speak, etc.  He is 7.  He is struggling with academics now and has no ability to understanding what to talk about, how to greet others, etc, but he has come SO far. Right after that meeting was my other baby with ASD.  He struggles across the board, but less so socially.  Mom teared up speaking about him, saying he has taught her so much, that she is who she is because of him. She is so strong for him. He did not speak until 4.  He cracks me up now- his favorite word is awkward and he always says "it never gets old" for everything.  He is a great boy.  Both these last two boys parents came at the same time, so I introduced them and remarked how well their boys get along and is pretty much their only friend.  They exchanged numbers and one mom remarked that she "feels so alone."  I get that.  I feel alone too. So alone.  I love that maybe they won't feel quiet that alone after this.

I have a meeting coming up for Landon on 12/2.  Then I will sit on the other side of the table and hear all the things my baby struggles with.  It is so hard.  Life isn't fair at all.  God Bless all us parents trying to do the best we can for our kids.

Do you know an adult who doesn't speak?

I don't.

I think about that a lot, too.  Can you tell I am a huge thinker?  I will be at a restaurant, or the mall, or somewhere, and I look for someone who can't talk, or I scan the crowd making sure each person can speak.  It's weird, I know.  My mind is so wrapped up in the what ifs, the worst case? Sometimes I have to remember my Landon does have some word and does have a decent variety of consonants {m, n, p, b, t, d, w, g, h} and Logan can now use {m, n, b, and w}.  Vowels are tougher for  both of my boys.  Anyways, someone once asked me, what's the worst case?  I said they speak by computer (AAC), and she said "well, there it is, you have a plan." I was shocked.  Ok, ok, so that's my plan?!? if nothing else, they will speak to me by computer. It was jarring plan to look at a 1 or 2 year old and think that.

Even if my school now, we have 3-4 kids with apraxia (one completely resolved with auditory processing now) and we have maybe 10 kids with Autism.  They all speak.  The most severe one is 5 and have maybe 20 words, but all are prompted, and he is severely on the spectrum.  He is often naked and should be in another placement, but I work with him too, and I think wow this child, if I remove xyz from him and ask him to ask for it, he can. Amazing.  He doesn't  have the motivation as much,  unless it's for candy.  Where is this post going?  Basically, just trying to show the mind of a mom and an SLP.  I am doing and around speech ALL DAY!! It is exhausting.  I compare my kids at school to my own kids.

So, do you know any adults who don't speak at all, and if so, why?

What you don't see

I am not out on social media about my kids getting services.  I don't broadcast it everywhere to all I meet, and honestly, to most I have discussed it with, they have no idea the actual impact on me, my kids, or my family's life.  I have a just a few people who probably "get it" without being a parent with a kid with any needs, and then I have my friends who are or who have been in my boat.

Anyways, Laura and I talk about this sometimes.  You can't tell.  You look at Landon's sweet face, little freckles he's getting, amazing green eyes, and you don't know he can barely speak.

You see Logan, with that crazy hair, to die for cheeks, and the best, happy personality, and you don't know under his little shirt, he is taped with kinesio tape to help his abs and trunk.

You don't know.

You can't tell that from Landon's Halloween costume, that he really didn't want to wear it.  No one knows Logan took forever to learn to self feed and still can't isolate his index finger.

They don't know Landon gets music therapy now 2x per week on top of his whole special education program.

They don't know I have had my kids in therapy since 10 m, done private therapy, craniosacral therapy, b12 shots, gluten free diet, removed dairy, etc, etc, to try to help, to do anything.  No one knows.

So what don't we know about others that we see?  I know my sister is honest.  Her son is about 1 year advanced in most areas.  This morning, I saw him work his zipper and was amazed. No therapy needed for that.  However,  I have told others about my kids, and they remarked that their own children were in services, had xyz dx, have a learning disability, are anxious, tried to kill themselves, were held back, etc, etc.  Most of us don't know a lot about others we meet.  That's the nature of our society, so I do try to remember when I see a picture of a child out and about at the mall, behaving, or sitting with a grandparent.  We don't know the whole story of that child, and I think there's a lot to learn, if everyone ever wanted to share.

What will it feel like?

How will it feel when Landon is able to communicate whatever he wants?  How will I look back on this time?  How will I feel if I am lucky to live into old age and people ask about my kids?  Will this be what I remember?

I think about that a lot.

Life isn't easy.  My mom died when I was 23.  I was 17 when she was diagnosed with cancer.  Every decision since that time is definitely impacted by my experience with watching my favorite person ever die.  Everything.  There is not a day I don't think about her, my loss, what I am missing.

That used to be all I thought about, for years and years.

Now it is stupid apraxia, sensory issues, not meeting milestones, falling behind, worried they won't be caught up by K. It's all I think about somedays.  It's weird how life shifts.

I hope in the future I can think wow I am so proud and when I hear their little voices, I have no doubt i will tear up time to time.  I know that.

Last summer, Landon could not jump.  He used to do a little two step almost when he tried.  This year, he jumps very well and can even jump forward now.  he loves to jump.  I don't remember exactly everything that went into teaching him how to jump, I used to tell him "Down" and then he would bend his knees and together we would try to say "up" and bounce up.  We worked on it a lot I know, but I can't remember exactly when he first jumped.  I remember looking at Alex, saying "he jumped."  We were at a park with a friend who has a boy the same age as Lan last summer and the other boy jumped and jumped very well and Landon tried to copy him and did his two step over and over.  The dad of that little boy laughed and asked me what is that? I explained he is trying to jump.  I think this will be how it will be when he talks well.  I won't remember all the details, but that feeling, that ugh, someone notices, someone sees he can't do something, worrying constantly, I don't think that will ever leave me, that memory that is.  I will always remember the feeling of that dad watching Landon try to jump.  I won't remember when he learned, but that feeling of someone thinking he is different, blah, I don't think that will ever leave.

Lesson to others:  keep your mouth shut if you can't think of a nice way to say something.  some people hold onto words and feelings longer than you.

Somedays I need a break

I haven't been on the apraxia kids page in probably 3 days.  That doesn't seem like a lot, but I always check it typically a few times a day.  Somedays I just want a break, a break from it all.  I don't want to read about another kid hitting a language spurt, or worse off, some person saying my kid has apraxia but at 24 months, they now have a 100 words, in 6 months.  #thatisnotapraxia

That part is hard.  I like to take breaks from social media for a bit sometimes and my hidden friends have now included people who post pictures of their nieces and nephews hitting milestones.  I like to remove myself from it all.

How are the boys?

Landon:  doing well at school, he wears a velcra vest now, and has a chewy tube hooked around him so he can use it if he needs to chew.  I guess he is Mr. charming, super flirty, and a happy, happy boy.  He loves going in now and is working hard.  Today was the first time he got on and off the trike all by himself at school (he has done it at home, but can't transfer since it's not the same item!).  The SLP he has is very good and I think he is loved.  He is talking more.  He is signing more and is trying to repeat.  He is super inconsistent and most structures are VC or CV still.   Did I mention he is painting now?  He is doing much better with art.  They said it is hard for him to expand his play.  He can do the first step, but not much beyond that.  In that regard, it's hard for him to try new things.  He knows what he knows and he doesn't want to mess up. This note came home the other day:  Landon is such a joy to have in class, I just want to say how happy he makes us all. His smile is contagious. Oh I almost forgot, he did some beautiful peer interactions today. He was playing something like "duck duck goose" w/ Stephie, and then at circle he had a nice moment w/ Amelia where they both were touching each other's hair and smiling at each other!
Much better to read that than the crap I read last year.  I am having a hard time getting him away from the ipad and computer when he gets home.  He really likes being outside, but it's getting too cold for that.  It is a balance.


Logan:  Logan is better at imitating than Landon, yet he has less sounds in his inventory than Landon had at the same age.  Still not pointing and still has trouble lifting his arms up.  Definitely more low tone than Landon.  He is doing well playing with his peers, doing better with the straw, and is described as a daredevil.  At 18 months, all his therapy is push in, within the classroom, with the other kids there, which makes sense for him.  he enjoys daycare and I guess loves to observe and laugh at the other kids.  He is a pretty happy guy.  He is getting good at imitating some motions to songs.


I guess that is it for updates.  I am proud of how much these boys work to get skills others take for granted.


Have a nice night!!

Don't want to lower the expectations, but I have to be more understanding

I have not lowered any expectations for either of my children's lives.  I see kids in much worse off situations do well enough to make it through school and have a career.  I expect the same for both of my boys.

Halloweens are some of my best memories growing up, but to be honest,  I have no memory of this at 1-3 obviously, and the first Halloween I even remember, maybe I was like 6-7.  Landon knew it was Halloween. We have been reading Halloween books the last couple weeks, and yesterday I asked him is it Christmas, said no; is it your birthday, said no, is it Halloween, he said yea. So I was happy.  His costume, I didn't put any thought into and didn't really show or go over with him, so that's my fault.  He didn't want to wear it, but he did.  It was a little small.  We went outside to go, and he wanted to play outside.  I said no, we have to trick or treat.  My sister brought up a good point that it makes no sense, put a weird outfit on, go knock on someone's door, and get candy, which yesterday was the first time Landon ate candy.  He screamed at the first house and so I said to my  husband, that I would just take him for a walk and see if he wanted to go.  Logan was also flipping out.  We walked a bit, then decided to try a couple houses.  Landon was definitely confused, but he rang the doorbell and waited.  I took the candy when they offered it, and we did 2 houses like that.  He wasn't into it.  I tried a couple more and he shook his head no as we walked towards the door, so I guess he got that part but didn't want to.  We went home and he helped me hand out some candy to probably 10 people, then i just let him go inside to play.

Happy Halloween.  I wish I knew what he was thinking.  Was he scared? did he not like the costume on him? Did he want to be back with Logan?

Hoping next year, he can talk more, and I wouldn't have to guess...

The day you know you are on a different path....

I work with many people who have young kids.  Somedays I can participate in conversations with them, but it's less so.  They are choosing daycares based on whatever: price, teachers, food, and I am thinking, ok is it out of the way for the therapists or what sensory activities are there? I am on a different path.  They talk about their kids talking back, or their child riding a bike, and I am still working on Landon saying hi and Logan motor planning how to wave.  I am on a different path.  I will never know what it's like for a child to "just pick up a skill."  I will never hear my children speak without a huge amount of therapy.  I am on a different path.

Somedays the reminders are more obvious than others.


May our path lead to a green meadow with lots of sunshine, life, and most importantly, self worth in what we have accomplished.

I keep forgetting...

That the speech is not going to be crystal clear as it comes in.  Landon has been talking more.  The words are not always clear.  There are no final consonants used and the prosody is off, making a lot of the words sound the same, even if the stress is supposed to be somewhere else. I think that makes sense.
Today he said "no" a few times and it's not a super loud sound and the /n/ is not as strong sounding in that makes sense.  He is doing more jargon, which I think is good, because he is trying to say something and he is working on getting it out.  It is a stage he had not been to before.

and then I read a study on using anti bacterial soap causing some neurological disorders and I feel like I can't win.  I definitely  used that stuff non stop with my kiddos when I was pregnant.  ugh. I work in a school.  Basically, the environment is being linked to a lot of this... I don't know.  It is a scary world in which to be a parent!


Night night

What goes up, must come down

This is the ride I am on, but it is sometimes affecting me less and less, because I know my kids, but anyways, both had rough days.

Landon's sheet actually circled "tough day" for behavior, said he cried throughout morning, refused to do yoga, did not eat, and they actually took his temp.  Poor guy.  I don't know what is up, but that is the journey.

Then, Logan had two sessions today.  Positives:  He drank from a straw independently for the first time! He is babbling using many sounds.  Negatives:  Today I was called and although I already knew, the words "global apraxia" were said to me.  I knew this.  I said it since about 8-9 months.  I knew this. It hurts of course.  Logan has a totally different personality than Landon, which they said hurts him.  Landon was frustrated(he is still) and he was driven.  He has a big personality.  Logan is so laid back.  He doesn't care.  The teacher said his progress is slow and he is not displaying all his skills because he spends the day climbing the slide.  I have to work with Logi more for sure.

Anyways, yes, two kids with global apraxia, genetics.  Maybe less my fault somehow.  Two kids in Early Intervention before one year old.  That's me.  Will I ever stop fighting for either of them?  Not while I am living.

Upward and onward...hoping tomorrow is better!!

Landon's first phrase!!!!!

At school today, landon said "roll the ball" when given three choices between movement activities, then he got up and ran right to what he had picked.

So, so happy and proud of him!!

Hopefully more and more people can see what I know is true, how smart he is, and how much he has in that brain of his!!

The day that God blessed me

God is great.  He is all powerful.  He chooses people for situations and tasks and He does know all.  I believe that.

I hear a lot "landon is so lucky to have you."  "He has the best mom he could ever have."  "That's why you are a speech pathologist."

People say those things without thinking and they do mean well.  If Landon was born on the west side where I work, he would not have moved along at all.  He would not be half the child he is at all.  I know that.  I am so glad that God entrusted him to me, and me to him.  He is truly like the half to my soul because I understand him so well.  But the people on the west side would not be worried, they would not feel sick all the time, and they would not be involved in every part of his care/treatment.  God has a reason for this.

I want to be unstuck.  That is what I want.  I feel like Landon and I are on a mouse trap or something and we can't move ahead.  Hell, even if we wanted to find our arms, or our legs, we can't because silly motor planning makes this too difficult.  We can't show all we know and most people don't take the time to find out from him.

Then I met a friend named Laura.  She gets it.  We do a lot of "me too" and "I know what you mean."

That is God saying.. i know you are hurting and alone, so here is a friend to get you through this.

That is how God works.  He has always saved me when I needed it and he will get me and Landon out of this, to a place where we can be all we are, and we can feel happy because others will notice and realize.  We will get there.

Songs of sorrow

When I started this blog, my friend, Laura, said songs of sorrow are ok too, that they are realistic and will be good to look back on.  The songs of sorrow continue.  It's horrible, I know.  I have two adorable, happy, and loving little boys, and yet my heart aches to hear words! Consistent words! that are recognizable to others beyond me.  I said to my brother today that i could give my left arm for that and he said to be patient, but I would.  I can't think of anything right now that I would not give for either, especially Landon, who has been working so hard, to learn to talk. I would give anything.  It's a desperate plea. It's the prayer I say all day long.  It's the ache in my heart.  I can't escape it.  It is an all day thing.  It's I hear someone speaking at the park, the restaurant, even at school, even when they are poor, or sit in front of the tv; they talk.  I immediately think not fair.  I see someone smoking when they are pregnant and as horrible as it is, my first though is, bet their kid will talk.  I see someone eating a hotdog or whatever, and think, they will speak.  It is just not fair.  I need to pick myself up, because already I don't want to do Christmas this year at all.  Hoping soon there is a miracle.  Please God, please, please, please, let my boys speak.  Whatever you want, I will do, whatever.

That's the prayer everyday.

:(


To God be all the Glory. Amen.

Acceptance

How do you get to the point that this is all ok?  That you accept this?  That you realize it is not all your fault?  I am not there yet, really not even close.  I still think of stupid things like taking that Aleve once before I knew I was pregnant, or giving him a medication or something.
It is hard.

But I read on the apraxia kids fb page that NT parents don't sit around and think boy I should not have done this or that, so why should we? Well, we do because society says something is wrong with our kids.  To society, our kids don't stack up.

It is very hard.

How do I cope?
and here is my advice:

(I think in the future my advice may change)

1) I try to only compare to us.  So I look at Logan a month ago and then now, not look at another 17 month old, because that hurts.

2) I hide most friends with kids on fb and I block them on instagram.  I can't see it, read it, watch it. I cannot

3) I rarely cry.  Why? because if I start, it would be everyday.  I typically just feel nauseous, worried, or sad, but I don't let it out.

4) Do what works for you  Yes Landon will hit me, no I don't put him in timeout everytime. It does not work for me, maybe it does for you.  I try to withhold the judgment on myself that I have to do xyz

5) Look for the positives. When you are a mom like me, an email saying Landon tried to talk, or colored for 1 minute, or tried to engage a peer, that is EVERYTHING to us. It can be a high that I need that will last as long as I try to keep it. It's the old emails I read when the days are tough.  Same way those comments build us up, we get knocked down by.. he can't do  or he won't do. Those ones kill. They kill so badly. I try to take them with a grain of salt.

6) and most important, we know our kids the best and we are the advocates.  There is no one going to come in and say something about my kids without consulting me. No one.  I make all the decisions. I read the goals. I ok everything. I like to stay in charge and I have to advocate.  All day long, they are on my mind and I do what I can each day.

Got to go, but those are them for now.

Made it a month already

Landon has been in school a month since today. Phew.  Each day I am surprised we make it.  I have more severe kids on my caseload this year, my own two kids receiving a total of 9 services together, and two nannies plus my in laws helping out.  I am always shocked we make it through!!
Throw in a lot of Jewish holidays Logan has been closed for and having an intern and stress has been high.  Luckily, only four more jewish Holidays left, and hopefully not much more time for me to take off.  I do enjoy being with my kids, but I hate missing the kids at work too, and I would like to try to keep some days just in case I need them when they are actually sick!  It is a tough trade off.

Bonus is I am off on Monday for Columbus day and a day for Jewish holiday next week = 3 days of work next week. :)

Landon loves school and hopefully Logan will be there next year too.  There is a toddler program for kiddos getting services.

I had more to write, but I am tired.  I put the tv on for Landon, and I have work to do!!

Kim :)

implementation meeting

I will blog more on the meeting I had with all people who work with Landon (there were about 10 of us there), but the body of the entire write up has something starred.  It says:

**Landon needs to be able to build trust in others before attempting something he is unsure of.  Motor planning appears to be a big area of concern as it is affecting not only motor skills, but speech too.  He needs repetition and wait time to process the information and allow himself time to motor plan what is being asked of him**


I guess that does sum it up, huh?

You suck, apraxia!!!

Tolerance level

Having a child who requires any extra support takes a big, big toll on a marriage.  My husband is a fantastic dad.  He is great with the kids and he loves them unconditionally; unfortunately, his fuse is short and his ability to connect with others on an emotional level is pretty much nonexistent.  He doesn't have the ability to have deep conversations and his temper is short lately.  I know he knows why Landon gets frustrated and hits or throws a temper tantrum, but his reaction is never positive.  I try to model a nice way to go about it, but it falls on deaf ears.  I guess before you get married, you kind of assume things will just be ok.  Ii mean, what huge thing are you going to encounter early on in marriage?  Having kids changes most marriages, and I know many people I work with who are not happy in their marriages and have young kids, but any extra support needed, working hard on a variety of issues that others take for granted, weighs on you.  I think in a perfect marriage, each person would attempt to shoulder a half of it.  In my marriage, I would say I shoulder 90%, and most of it is the emotional piece.  It is exhausting.  It is isolating.  It can just build up.  I actually like the times I am home alone with both my kids and I don't have my husband over my back judging me on how I handled something.  Maybe he feels the same.  I like to just be with them and be us.  I keep praying for things to be clearer, easier, and for there to be a set path.

My husband doesn't read this, so that's that.  He doesn't ask many questions.  I know he is hurting, but he does not say anything.  It is lonely.

expectations of society vs. what actually matters

I have been thinking about this as the holiday season starts approaching.  as someone with way too much on my plate as it is, I have yet to decorate for fall. I did not put too much out last year because it would just be broken, and same goes for this year.  I will get some things out soon and maybe even today, but minimally because I live with two monsters :)

I am not hyping up Halloween or even Christmas.  It's sad when my kids are unable to communicate and society has a great idea that all these kids could say "Trick or Treat" or even care about candy.  Mine don't/can't.  Landon has never eaten candy and I don't expect to start right now.  We plan to hand out candy at home, do minimal costumes, and go to a few houses nearby.  No huge deal, and I am glad school doesn't celebrate either.  That makes it nice without feeling like I have to go all out for a costume my kids may not wear, and it's money I don't have.

Thanksgiving is easier and that's just food and family.

Christmas hopefully is low key and a few gifts for the kids.  They have so much stuff already, but the time together will be nice.


Anyways, someone had posted about sensory friendly costumes on my apraxia page and a few ppl had said it really doesn't matter too much, and you know what, those people are right.  Feeling loved, happy, and secure is what matters.  Many of us have no extra money for these things, and our kids don't know it and don't actually care either.

Rant over:)

Happy Fall!!

Landon's email from 10/3/14

Hello,

Here is a little bit of what Landon's day was like at BMW. He is coming happily into classroom every day! He gets his favorite book for starts. We are doing "first wash hands, then book".  Then he is so ready to play! When reading, we are working on turning the pages instead of banging the book. He rolled some chalk across black paper, and w/ some hand-over-hand he did make a few lines on the paper. He used the all-done thing b/c wasn't too interested in the chalk. We played connect four by inserting the pieces, and when he was all done, he cleaned up the pieces. He enjoyed taking turns with this game.

Landon had a short but happy time of painting today! With hand-over help, we sang a song while moving a sponge brush over the paper. There was bright colored paint out and it was fun to see the colors appear w/ every beat we sang. Since Landon likes to bang his hand on the table, we tried banging our hands on the painted paper, and he was not upset to get paint on his hands. He washed up and moved on to another activity.

The yellow room has had a puppet theater set up for last few days. Today, Landon became very engaged in puppet play with Elise. He liked being the audience, and while Elise was singing Old McDonald w/ puppets, she gave Landon choices for which animal next. He also came behind the scenes at one point to pat her on the head for a thankyou. He clapped after every animal.

Yesterday Landon started playing a game in the gross motor room, where he went behind me and came around as if to surprise me. I gave him big reaction, and he was thrilled. He kept this up for long time, and it was so funny for all of us! He really laughed very hard. Today, he continued this game on the playground, but with a peer! Andrew was swinging and Landon would sneak up on him from behind. They were both engaged in this, until Julie came, and she got to see it for a moment from the gate.

Yesterday we also followed up on our field trip by making applesauce in the classroom. Landon helped wash some apples by moving them from bowl to bowl. We again did big/small apples for him to choose from.

Today Elise and I had a few kids in the Big Room, and we put out a large bean bag for jumping on. Landon enjoyed jumping into this very much. He was able to jump off a short height with two of us holding his hands. Again, great turn taking w/ peers. For snack there were canned pears out with forks to use, but Landon didn't want to try. I think maybe he didn't want to eat the pears. He did eat goldfish and drink lots of juice. He loves to pour and will ask to pour more before his cup is empty. We are working on having him ask for more when he wants, instead of making noise and closing eyes.

If the class snack is same or similar to what you've sent, we've been having Landon eat the class snack. He's been eating well and is doing great job now telling when he's all done! Today he pointed to the trash can, telling me he was all ready to clean up!

Tanya

How nice the aide sent this to me at 7pm at night on her own time and Landon must be loved already!

Landon, my superstar

Landon went on a field trip to the apple farm today and here is the note from the aide who was with him.  I was sent an email:

 

Landon had a great time on our field trip to Apple Farm today. He waited patiently w/ kids for the big tractor to come, entertaining himself by exploring the stones on the ground and the ropes, etc. The first few minutes on the tractor he wasn't quite sure what to think, but soon became interested in watching the driver (we sat in the middle of the wagon, facing forward). When we were picking apples, he had a blast putting them into the bag! He laughed very hard (so funny!) every time he placed an apple in the bag. He picked the apples off the tree w/ some hand-over hand help to grasp (the apples were pretty wet/slippery), and filled his bag. When his was full, he helped me fill my larger bag. I have lots of apples for my family, b/c he just enjoyed this so much! He liked the sound they made kerplunking into the crinkly bag, but he also was watching where each apple fell onto another, etc. We did Big & Small apples. There was some singing while waiting to go back, but also some playing and walking around. He really liked the stony path between the apples. The kids all had a snack (goldfish & graham crackers), then got to play a few minutes before we left the farm. He walked through the apple barn with me, and he liked the big orange pumpkins but did not like the ugly bumply gourds! Good observation, Landon! :) Fell asleep for the ride back to school, but woke up in van happy upon our return.

So proud in general of this little man.  I have more to update, but he is working hard, so hard.  So many other kids, things come so easy to.  He works 10x as hard to get the same skill.  What an inspiration and it will serve him well in the future, because truly,  nothing worthwhile comes easy to anyone.

Love my boys!

Keep it in perspective

I am a member of the delayed darlings group on babycenter.  I don't post much, but there are others with kids with apraxia or hypotonia, etc, on there, and I feel like I can add something as an SLP sometimes, too, so I check it every few days.  I feel alone in this journey, but I am trying to keep it in perspective.  A lady the other day posted about her 3.5 year old son.  He just learned to crawl.  He cannot chew and he doesn't eat any table food.  I think he still gets a bottle.  She was pleased that he started to realize where to put his hand in the hole of his shirt.  Wow.  Then my sister was on the phone with me the other day and a nurse or someone buzzed to me talk to her (she is the NP) and there was a patient getting teeth extracted before radiation...Kristin said age 34.  So while I have my ups and down and truly do feel rather alone, I am so blessed for the boys I have and the life I get to live each day.

The birthdays

Landon is almost 3!! Tuesday! It's hard to gauge his total understanding of this since he cannot communicate it to me, but he noticed the decorations up this morning, and we have been singing happy bday and talking about how he will be 3 soon for awhile.  We have also been saying today there is a party, etc.  Birthdays can be hard.  When Landon was turning 1, I was so nervous/upset that he could not self feed.  It was hard to watch at the 1st bday.  The 2nd bday, I knew he should be able to start to blow out a candle and he couldn't.  Guess what- he still can't, but I worry less about that now.  This year, it's talking.  I just want him to talk.  I don't even if he can never blow out a stupid candle- that does not matter.  I just want him to be able to speak whatever he wants to say.  It's always waiting for thenext thing...this thing is the biggest thing though.  Speech is the key to everything.

But he is making lots of improvements in many ways and we keep praying.

and no matter what, I would never want another little boy.  I love my Landon.

Happy 3rd baby boy.

Week two at school and update on Logan

First, I have been thinking of this statement all the time:  HOW DID I EVEN GET HERE?!? It goes from worrying that my baby isn't crawling to being in a special needs school.  I sit and I have no idea how I have even got here, or why this is happening, BUT I have to hold my head up high, do what is best for my baby, and be strong.  I have to be strong, stronger than I feel.

Week two is better in that Landon is running into the school and the teachers say he LOVES school (he is his mother's son after all) and he seems happy throughout the day.  He is struggling in play- it is mostly imaginative, creative, pretend type play, and he doesn't have the words or motor skills to engage in that for long, but they brought in some familiar toys and are setting up things that he likes and then he doesn't try to leave the classroom. He loves to read and he has a few favorite books now.  There is a visual schedule for him for transitions and that helps.  The SLP is using LAMP (AAC app) with him and she said on Tues, the first time she introduced it, he made a two word phrase appropriately and independently and that he is very smart.  That made me happy.  He even used it today to say he was finished with an activity independently, which before would have been a tantrum.

Cons: No communication at all from OT/PT yet.  I have sent emails, written in the notebook, and nothing.  How do I get them to respond?  I want to know what everyone is doing with him and communication hasn't been that good.  Then I  have 3 different ppl pick him up on various days and I feel out of the loop, but overall, I am proud of Landon.



Logan just turned 17 words:  He has some consonants in babble now, yes babble, and yes reduplicated- b, m, n, w, and h.  He has 2 vowels.  He cannot point yet or use a straw.  He is doing much better with motor skills and uses kiniesio tape to support his trunk and core.  He is tired with adjusting 2 one nap and daycare, but he is also working very hard....

That's it for now...

Landon in school

Landon started school.  honestly, where do I think is best with him is home with me.  I do believe that.  He is tired there a lot and there are a lot of demands on him.  Today his sheet said he is starting to smack the teacher.  I guess it hurts to see things like that on his paper.  Maybe I would rather not know. Yesterday said he interacted with peers 2x, today said also that he was interested in sand but did not engage in it.  I get that it is day 4, and not sure what I expect, but I guess, it is hard.  Mainly, it is really, really hard to get to that point of acceptance knowing this is what he needs and it is not going to be easy.  I keep saying this is what he needs, but I can still hate, cry, get mad, and feel totally cheated out of.  I was reading an old journal entry shortly after my mom died and something bad had happened and I was so angry at her that she did not protect me, that somehow she did not stop that from happening.  I have had similar thoughts since then, not anger, but I have this amazing guardian angel, and she knows this is hurting me, and she can't stop.  She can't make my kids talk.  It just is not fair.

It's not his fault

This is a phrase I say to my husband all the time.  My husband just isn't as patient as me, and I know many others, even my sister has said she wouldn't, couldn't have the strength to do just that.  Landon's sensory issues are generally visual, like he likes to look over items, or he gets distracted visually; however, this has gotten better with the addition of the b12 injections we have done.  He always doesn't like new things on him, like he wouldn't wear his winter boots last year, so I gave up. I knew they were tight,and I just put him in sneakers and carried him to the car.  I will have to figure out something for this coming year..  He doesn't like hats unless he is very cold, sunglasses, or things like that.  We have introduced the puddle jumper for swimming a few times this summer.  I knew he wouldn't like it. It is tight, foreign, etc, but this am, my husband decided to try it.  Landon got into it ok, but he hated it on. he was thrashing, trying to get it off, we got him in with it, and here's where we differ:  i would do one minute on, praise him, try longer next time, or really, just try next year, but Alex says he should keep it on if he wants to stay swimming, so Landon decided he was all done swimming.  It started his day off bad.  Then I told Alex everyone has sensory issues- he says no, you don't.  I said I hate crowds, being hot, having my food touch, etc.  Everyone one does.  I will add tolerance to things like boots to Landon's goals for the school year.  he starts school on 9/8 and I don't know what I expect: a miracle, no, but progress would be amazing, noticeable spoken language progress is what I would give him every last item I own for.  Time will tell.

Coming out with it

I started this post a few times, but lately I have to say something.  Landon is not nearly 2 and babbling with some random words; now, he is almost 3 and it is definitely easy to tell he is way behind in expressive language.  I feel like most who spend time with us see how well he understands and tries to talk, but he is so hard to understanding and there's a lot of made up words that seem to mean something, but it's hard to tell.  I have had to say things lately.  it's awful.  I saw a friend I  had not seen since Lan was 18 months a couple weeks ago.  I told her.  I had to tell nannies, even said something to someone, a teacher, the other day who never heard of it.  Oh, I had to tell the photographer who took the kids pics last weekend,... Today we have a bbq with friends. A friend of mine I went to grad school with will be there.  I will have to say apraxia and she will know what it means.  Even SLPs often don't realize that apraxia is often global and often has a sensory component, so we shall see.
Anyways, I have been in hiding,but can't be forever.  Maybe next is education.

Busy getting ready for school

Landon's preschool is free for him, since he is going as a special needs kid.  I thought I would save money, but it will be at least $450 a week for both the boys by the time this is done.

so far, this is what I have

Monday
Lori and Jim (inlaws) Am 7:15- drop him off at school at 9
Julie- one lady I hired, to pick him up at 12, feed lunch, he will nap at her house $11 an hour

Tuesday- Looking for nanny- interviewing today-
Will be at my house at 715, stay, maybe drive him, Clean, have lunch ready, etc, leave by 3.  I hope she will take like $8 an hour.

Wednesday AM- Nanny interviewing today would arrive to house by 715, stay with him, bring to school
Lori and Jim pickup noon, bring him to my house, lunch, nap, leave when we get home.

Thursday and Friday will look like Monday...

I had a nanny all set up, and now for three weeks, she has not written back :( ugh. so I had to put another ad on care.com.  I hope this works out!


Busy few days-- I have a trial nanny run Monday, tues, Landon's special ed team comes to meet him, plus all the regular therapy.  Wed, back to work..


We shall see..

sick of

I am sick of the constant whining.  I notice kids who talk don't whine that much.  I always have to reassure and explain things to Landon because he can't ask questions, so we pull up somewhere and he whines, and I have to say, we are at a new doctor to help you talk and they will be doing xyz.  plus, just around the house, he whines.  How frustrating to know exactly what you want to say and can't say a damn thing.  Today is a day I would like to cry with him because he has already cried for a half hour straight today trying to say something, I have not a clue, I got out the pecs and the talker, but he was already past that point. Then he hits and hits and hits.  I can usually redirect, but today it really hurt.  I put him in timeout, which I feel sick about, and he is just crying and crying.  I got him out and he hugged me, just leaned into me, and cried. I feel so awful.  2 weeks till school starts and hopefully more progress.  Then I will be doing this all with Logan.  Somedays life sucks.

The things you would never notice

I am a stickler for details and I see everything.  I have an amazing memory which I have always enjoyed.  I haven't read the milestone lists since Landon, yet I remember ridiculous one; by 15 months, say shh with your finger to your lips.  That is a ridiculous thing.  What if a child can't even isolate the index finger by then?!? Anyways, I have most people with kids hidden on fb and that has been amazing.  On instragram, it is much harder. I forget they are out there and then boom a picture comes up. If there is something in "quotes," I assume it is something the kid said.  Gets annoying.  Anyways, if you weren't in this world, you would not see much.

I despise the 1st bday pictures with the kids feeding themselves cake.  Neither of my boys could self feed by 1 year.

I hate the straw pictures.  Just the other day, there is a kid about the age of Logan and I know the straw wasn't the point of the picture, but that is what I saw.

I see pointing.

I see smiling on command, something Landon cannot do.

I see kids saying "ooh," but their lips are rounded.

Of course, there is walking and climbing, and maybe using a potty that people find necessary to share on social media.

i am sure I don't see the other stuff, though.  I don't post my fears or my worries or my kids' deficits, so sure others don't post theirs.

But until you are in this world, you are probably missing the details.  Good for you.

Landon's favorite word and Logan's first word

Last Friday, August 8th, I heard Logan's first word.  We were in the middle of his IFSP meeting and he came over to me, gave me a hug, and said "mama." I tried not to react like a lunatic because a lot of people were over, so I gave him a big hug and said, "you're right, mama." and I smiled of course.  The SLP said I have never heard him say that, and I said he has said it three times before like when he was eating, but not at me. She was pleased.  I have not heard it since, which is what apraxia is about, but I heard it, so I was very happy :)


Landon likes to say "yea." he is so cute when he says it.  Somedays it sounds different than other days, but anyways, if he really wants something, he will nod as he gives it to you or points, like come on say yes. so today, he handed me his ipad, and was nodding his head, saying yea, yea, yea, lol. made me laugh.

Those are my stories for today.

XO

Landon my sweetie

Landon can't talk well.  He has some words he can say well and some sounds he uses well and words tend to come and go still.  Some days he talks a lot, and other days, not so much.  That's how it works right now.  That is apraxia.  He is a happy boy.  He is a very smart boy.  One thing he is doing very well is social development.  This area is hard without speech.  Ever since he was little, everyone said wow he is so social.  They say the same thing about Logan now, even moreso than Landon, but in my head, I always think, wait till he can't talk and his peers can.  It makes it hard.  Both my boys love people and kids and being around others.  Both are always looking for attention.  Anyways, when Logi was born, Landon was just 18 months old.  He could not understand there was a baby coming, and pretty much, Aunt Loo Loo brought him home and Mommy had a baby there.  He ignored Logan in the beginning.  He could help me give him a bottle if I asked, but he just was there.  When he started moving, he became more interested, and now I can say that he loves him.  even if I ask do you love Logan, he nods yes.  He kisses him all the time and tries to engage him in play nonverbally. He always wants Logan to play chase, so he hides around the corner, comes out, tries to say something to him, and runs away.  Logan gets it, and he loves it.  When Logan catches him, Landon hugs and kisses him.  Landon is my hero.  He is so brave and he keeps trying.  He is truly the sweetest boy.

Logan's IFSP

Logan is 15 months.  He had his IFSP meeting yesterday.

He is now getting for 26 weeks/6months:

52 visits speech
40 visits PT
26 visits teacher/developmental therapist.

Many goals were set including increasing overall strength, get up from floor to a stand, climb over items in his environment, self feed all foods, use a straw and open cup, start speaking, pointing, increase core strength...

Overall, he has a good team and I am happy with what he is getting.

Onward we move....

The milestones mean more

It is true.  I am sure every parent delights over their kids first word, first steps, first everything, but not like us.  I know it can't be true.  I STILL smile inside whenever I see Landon put cheerios in his mouth.  I remember how I worked for at least 3-4 months on picking up those tiny things and coordinating getting them to his mouth.  I still know the day he did it on 11/11/12.  I was so proud.  Logan started self feeding this week also- on 8/4/14!  Logan is now a walker.  Today I picked him up from daycare and he didn't see me, but he had stood up on something and took steps to the fence and then just left the play area and walked to the door to get in.  It was so far and off he went.  i was grinning so big.  I know how hard that little low tone body is working and I am so proud.  I then went to get Landon who was doing hard work with playdoh and digging things out of them.  He gave me a big hug and sat back down to work.  HOW AMAZING IS HE!  The moments mean more, yes they do, and this momma is so proud of my two perfect little men.

I do it all

This is not to make myself feel good, or to list everything I am doing, but to have two kids getting services is exhausting.  My husband does not get it at all.  I just do it, there is no thank you, there is no questioning, or asking, or even reading their notebooks.  I do it all.  I mean, all.  I am pissed at him and just hung up the phone.  I set up a meeting with a potential nanny for the fall for Landon for MWF, to pick him up at school, take him to her house for a nap, and be picked up.  I had to get my cousin to help me last Friday so I could take Landon to the meeting-- Alex had a three day, all day long, golf tournament.  Do you think I got a thank you for watching the boys, or a you did a great job with them... ummmm, no.  It's expected.  I have to set up a secondary meeting with this lady, Julie, who gave me paperwork to fill out.  Who filled it out?  ME.  She said either Wed at 12:30 or Thurs at 8.  I already set up Logan's 6 month review-- oh wait, who called the service coordinator and two therapists for that?? me.  Who wrote out goals for Logan? me.  anyways that is Friday at 12:30 and my husband complained that it was then because he just gets off work, so I picked Thurs at 8 to meet with Julie at my house.  My husband has golf league Thursdays, which he leaves for at 1.... so it's not that 8 o'clock is not 7 hours already of golf, but he flipped out, says he will not rush back, etc.  So I just said it's thurs at 8, it's for landon, and I am getting very sick of this, and I hung up.  To be honest, that's one reason I keep working... if this doesn't work out long term with us, I need to make sure I have a plan for me. and I am telling you, being selfish and unappreciative is not making me happy.  HOW ABOUT thank you for setting this up, finding this lady, etc, and I will try my best to be home because I know it is important for Landon.

And this week alone and let's see it is TUESDAY!!!

I have:
-written two notes for the therapists in the notebook
-talked to Juliet
-talked to PT 2x
-left voicemail for craniosacral therapy
-set up private ot
-spoke to two private SLPs
-filled out paperwork for the fall
-Spoke to Landon's OT
-3-4 emails/phone calls to set up the music therapy eval, which is now next week
-spoke to Landon's support teacher for the fall, that was a long phone call.
-set up nanny apt

Give me a flippin' break!!!!!!!!!!!!!!!!!

grief

This feeling is grief.  i have been in some kind of mourning since May 2000, when my mom was diagnosed with cancer.  I did not really understand much of what was happening then, but my whole life was turned upside down and we spent 6 years living appointment to appointment, in and out of the hospital, surgeries, losing hair, seeing my mom in so much pain, etc.  Those were happy and sad years and we did the best we could.  After my mom died, I feel like I just stood in perpetual grief.  For the first few months, I know I was completely numb.  I couldn't sleep, or I slept all day, and I could not concentrate on anything.  I started to come out of that when I met Alex, but the pain was not really dealt with- how can it be? Grief is ongoing.  When I had Landon, I felt alive again.  The first year was magical, amazing, just what I thought parenthood would be.  I was pregnant with Logan before i was really worried, and now for the past two years, I teter on the edge almost everyday.  I always feel on the brink of tears, my mind does not turn off, and I am working so, so hard on everything, now times 2.  Laura is at the apraxia bootcamp and she said they discussed grief and the pain this diagnosis involves with a family and some SLPs were not aware.  It is so hard.  I wake up and pray for my kids, I go to bed and pray, and much like other parents, I just want the best for them, but this time period is not easy at all.  It is not carefree, and I am often just sitting on the edge, praying to keep it together for another day. repeat again, repeat, throw in work, trying to maintain a marriage, sleep, clean... it's impossible.  You do the best you can.  I do it all for my kids, and I want no regrets.  Grief is powerful.  I know the other side, because I saw it for a brief period in the last 14 years, and I will get there again...

delight in each step-- the phoneme /p/

P, B, M, are pretty much the first consonants, since they are formed with your lips and kids can see parents use them.  Landon had an /M/ by 4 months, /b/ was maybe 19 months, and /p/ was just recently.  His favorite thing right now is the vowel /ee/ with /p/ and /b/ so pee pee and bee bee/.  I love it. I know how hard he has worked to get here!! Go Landon!!

Why do we become moms?

I remember before i became a mom, I knew I wanted kids.  Why?? It is so much work.  Do people become moms for selfish reasons, like it will feel so good that i am wanted, someone to take care of me, someone to spend time with. Do they do it to carry on traditions/memories?  Does it unite them as a family? Do they truly enjoy kids?  A whole lot of reasons.  I know after you have one child, people think I need a second so they have buddies, or I have even heard it's been so amazing and fun and filled me up with the first, I just NEED to have it again, like a drug you need a hit on, that feeling of being loved.  Maybe that's what it is.... crazy love.  Whatever the reason, they grow and sometimes you don't keep that close relationship, no matter what, time changes everything.  so it is an in the moment kind of thing.  I try to remember that.  my kids are the other half of me, no doubt.  I would give anything for their happiness and I have said to Alex many times, I would deplete my bank account (already am for tx, daycare, etc, anyways) for them to speak. I would give up my wedding rings EASILY and not wear another one, for Landon to talk.  ANYTHING.  That's what moms do.  But it's not my life truly, it is theirs.  We are just a small part.  An important part, but not all.  Alex and I don't have the extra money now to take them lots of places.  We can't afford much right now, but what we can give is love and support and time. and I guess in the end, those are the memories I hope they remember when the next part of their lives come ....

The best one to come play/help

I posted about my dad before.  It has been a week since I saw him and no plans to see him this weekend, which I am alone all weekend, but that's ok.

On Thurs, my cousin, Ally, who is Logan's godmother, and the same age as me, texted to ask about coming Friday. Perfect, I thought. I am alone and I would love some help.  She is truly the best one with the kids.  She brings no other kids, so 100% attention is with us.  She always wants to help clean.  She does dishes, she picks up, she helps me organize.  She does it all and she is soooo good with the boys.  Even Landon, who kind of got to know her last year when he was super attached to me, was playing with her, holding her hand, just happy.  She stayed with us for four hours, dinner, bathtime, got to go to the park, which is so hard with both of them alone, impossible really.  And the other side is Ally cannot get pregnant.  She has been trying almost 3 years, just did another round of IVF, and she keeps saying all she wants is one kid.  Just one.  I looked at her yesterday and said I worry incessantly about my boys, I mean, it's constant, but I am so grateful to have them. so Incredibly grateful.  Thank you God for my cousin, Ally, and for allowing me to be a mom.

My biggest critic

is my dad.

I live 2 blocks from my dad.  There are maybe 15 houses between us, and we live in the city, so not a lot of space here.  I don't see him a lot.  I see him every 3rd week probably, more if I walk up there.  He stopped by yesterday morning.  This is probably a sad post.  Anyways, when he comes in, it's always just random.  He stopped for maybe 10 minutes yesterday, probably 3-4 of it he was on his phone.  He comes in, sits down, never down with the kids, and starts the questions.  Is Landon talking yet?  Is Logan walking?  I just feel like everytime he comes I have to have something to show him that's good. So yesterday, I had Logan walk across the room. Landon did his fishing puzzle and the boys are always kissing on each other, so he saw that.  Quick as he was there, he left, and he will be gone for a bit again.  He just can't seem to relate much to my kids, or really want to get to know them.  We definitely don't have that active grandparent role here, where those tight relationships are formed.  Maybe when they are older, my dad will be better.  Literally, Alex was upstairs in the bathroom, and when he came down, my dad was gone.  poof.  where's the progress...  I am outta here.

My mom would have been much different to us.

Logan Gabriel- 15 months

Logan's development is similar to Landon's in some ways, and others, not so much.  He does not give up as quickly, but now, neither does Landon.

My biggest worries are:
at 15 months, Logan has no words and he is not babbling.  He is using some sounds, but not in reduplicated babbling, or anything.  Sometimes he says /ma/ or /mama/, /na/, and /eh/. He also says /ah/.  He was only cooing a month ago, so I guess this is some progress.

He will drink out of an open cup if I hold it for him.

He will take bites of food I hold- I worked on that with Landon till past 2, so I was happy he was able to do that.

He can drink from the honey bear straw cup with some assistance.

He will not self feed.  He is doing better with Kix and I am focusing on just that food for now.

He does not mouth toys.

He is learning to walk, but lacks trunk/core support to go for too long, but that's ok.  Crawling is good for the body.

He is clapping since 8 months.  He can wave and he waves at people he sees.

He is beginning to whole hand point.

He has good joint attention and checks my reaction when playing all the time.

Gut feeling: apraxia

Other gut feeling:  He will be ok.

Progress/double edged sword

I don't really like much to be around typical kids.  Horrible I know.  Only one I am around that I enjoy is Nicky, and he is definitely very typical.  He is actually advanced in most areas, so I try to remember that when I see him do things! He is good to Landon.  It's hard.  When your child is struggling with something, you go to a place where you try to look for good all the time, for progress, for happy signs.  I do remember in the beginning, the deficits were not so obvious.  i could see them because I am in this field, but i was in such a happy place.  Even as an SLP, I am not as aware of appropriate speech/language development, because I rarely see it.  Most of the kids I work with are so far behind.  Most of my kindergarten students are using maybe 3-4 word utterances.  They didn't get as intensive or early of intervention for sure.

Anyways, we look for the positives and we don't compare to each other.  I just go month to month.

Progress:

Landon is using two hands together now.  He loves to do the puzzle with the fishing pole or magnets on the end and he is so good at concentrating.  He doesn't get frustrated if he can't get to it first.  That is huge progress, just steadying and using his hand, taking the other hand to get the piece off, and not getting mad.  I remember when he was first evaluated, he threw everything if he could not do it the right way immediately.  He was so frustrated with his motor planning.

Landon is using more signs.  He can say more, all done, again, please, eat, open, and some others.  He uses these sometimes in the wrong spot, like saying again when he means more, but the motor planning required to sign is hard and I am proud of him.

Landon is doing the stairs without the railing, if they are not too steep.  He can jump very well now. He is working on jumping forward.

Landon is happier.  He is much happier being home and being supported.  He is showing more empathy.  He is loving logan and kissing him all the time.  He tries to invite him to play anyway that he knows how to.  It is sweet.

Landon can almost take his shirt off.  I have to help to start the process.  He can get a coat/sweatshirt off, if I help with the zipper.  He has no interest in getting his shoes off, and i need to work on that.

Repetitive behaviors have diminished to mostly visual processing.  We started cod liver oil and maybe that is helping.

Speech: he has some more words and is trying hard.  He has more sounds.  The words I hear everyday are: yum, mama, more, yea, look.  They are approximated often, but getting better.  Not usually done on command, but will randomly run over to me saying mama.  it is sweet.  He is getting good at answering questions best he can.  We are working on functions/descriptions of items.  We play a lot of memory and I have him look for something we can eat, or an animal, or something cold.

Landon is working hard.


Next time I post, i will write about my Logi bear.

XO

Logan/Landon current scores

Here is where my boys are:
Scores do matter here.

Logan:
Cognitive: 75
Receptive Language: 85
Expressive language: <55
Total Language: 61
Adaptive: 86
Fine motor: 94
Gross motor: 84
Social Emotional: 85



Landon:
Cognitive: Overall 74
nonverbal: 94
Verbal: 57

Expressive language: 18 months
Receptive language: over 24 months- did not test, just went by observations
Fine motor: 76
Gross motor:  Not sure yet
Adaptive: 88
Social Emotional: 84
Sensory: one definitie difference (visual), 3 probable differences...

neurotypical kids

Whatever normal is what that term, NT kids, means.  There is no normal, but society does think so and judges accordingly.  i was judged last week, when I brought landon to the chiropractor with me and we ran into his old OT.  She was asking how he was doing, and Landon was playing with a truck from my bag, and the OT later called me to say the doctor had been questioning her, wondering why he doesn't talk, is he on the spectrum, "what's wrong with him?"  I was shocked, very hurt, and sad.  Why can't we just not judge on the first thing we see?  I had a talk with him on Monday when I went, and turns out, he had never heard of apraxia.  So I did a little educating.  I am sure Landon will continue to be judged, but i am hopeful, loved for who he is.



So, anways, my friend, Maureen, has a son with Autism.  I had never met him until a few weeks ago.  He is 5.  I could tell he was ASD immediately, but i was so so so impressed.  He was having functional communication/conversation with me, was following directions, eventually went swimming in our pool, etc.  Maureen is an amazing mom and he has done so well.  his voice seems more mature and he did use some echolalia, but he is headed to mainstream K with pull out support.  I asked her about landon and she said she sees severe apraxia. Oh, my friend, Maureen is an amazing, I mean, AMAZING, slp.  She said Gabriel did not point to anything until after 3. He could not do stairs holding the railing until then. He never showed them anything, etc, stuff landon did just after 12 months.  She thinks he needs better SLPs, and I do agree in many ways, but she was so impressed with how hard he tries to speak and tries to communicate.

We discussed NT kids.  Sorry for all you who read this who have them. I said I honestly picture a lot of those kids addicted to meth, or maybe they skip too many classes and don't get their diploma, or they get pregnant at 16, whatever.  Their life won't go as planned either.  We had a good laugh.  A few summers ago I worked with a boy named Alex. he has ASD and he would tell you so.  We are fb friends now.  he is probably 24 now. he is finishing his doctorate.  He is quirky and maybe doesn't have a ton of friends, but he is successfully and very smart.  I read into a teacher friend the other day. her son is 22, doesn't even have his associates yet, back living at home, and we said, wow, alex is doing better professionally wise than her son, who had no difficulties.  Interesting.  There is no guarantee for anyone.  You take what is handed and do the best you can.