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!