Thursday, November 27, 2014

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 :( :(

Wednesday, November 26, 2014

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!)

Tuesday, November 25, 2014

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.

Friday, November 21, 2014

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.

Thursday, November 20, 2014

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.

Monday, November 10, 2014

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?

Sunday, November 9, 2014

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.

Saturday, November 8, 2014

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.

Thursday, November 6, 2014

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!!

Saturday, November 1, 2014

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...