Eval

Last week I took Luke to his evaluation by his developmental behavior pediatrician, which was hard even though I already know half the struggles he has everyday. Seeing him struggle and not being able to help him is something no parent wants to watch.

 

We know Luke struggles everyday with having global dyspraxia, sensory processing disorder, adhd-combined type, dyslexia, dysgraphia and some more but with all these there are so many aspects that we don't understand still. There really is no telling what is going on inside his head at any time, and one minute he can be the sweetest most caring little boy then like a flip of a switch he is in full meltdown mode and I am left to figure out why.

 

He constantly tells himself he is horrible or he can't do anything right, that he is a bad boy and it takes everything I have to try and convince him that IS wonderful. But then just the simple act of telling him to stop doing something ends us back in the battle field again. He can't control his brain from thinking that every time he makes a mistake he is failing.

 

So the intent of this evaluation was to help us figure out exactly what is going on inside his head. Many people have told me that he shows a lot of Autistic tendencies and that he is probably on the spectrum somewhere. And yes I can see those characteristics in certain things he does,

-he has always lined up his toys, and color coordinated his cars and blocks.

-he has sensory processing disorder, which can also be a disorder all by itself but also a trademark of autism

-he has developmental delays

-he toe walks

-he will sit for hours engaged in an activity that most kids would be bored with

-he HAS to have his alone time

-his meltdowns are out of control

I could honestly go on and on about all the symptoms he portrays but really all I want our ways to help him. If he has autism or something else going on, he just needs me to understand him and be able to help him.

 

This evaluation was not much different than his pycho-educational evaluation he had back in May 2013 for school. But even after being in developmental kindergarten for half the school year already, he still struggles in areas that should be so simple. And it is heart breaking.

He was asked to time of day it was.. not like the clock time but like is it morning, afternoon or night, and it took several attempts and lots of extra clues for him to figure it out. He was asked what his last name was, he knows but he has to say his whole name to get out the last name and he couldn't write it when asked. He actually couldn't even write his alphabet, the only word he still only knows how to write from memory is his first name. He also had to imitate the doctor with simple hand movements which proved to be a greater task.

 

And I'm not writing this to tell you all the things he can't do, but for an almost 7 year old who has been in school since he was 2 1/2, was in pre k twice and now in a developmental kindergarten with only 4 other kids it is hard to cope with.

I KNOW he is smart and I want him to succeed, I HATE that he has to struggle to do so. He gets so frustrated at himself and he gives up so easily. So I really hope this evaluation will give me some insight on ways to help him. But I do have to wait till Wednesday to find out.

Christmas traditions

I have always loved Christmas time, and when I had kids I thought of all the family traditions this season would bring. All the hype, the decorating, the cookie baking, seeing Santa, shopping.

I can think back to the first couple of Christmas' and recall they were smooth, Luke was only 2 when Zach was born and our first family of four Christmas was great. Then Zach got sick and the whole world changed. Zach was in and out of the hospital so much. His entire 2nd year of life was basically inpatient and every holiday was spent in a hospital bed. Not the family traditions I had planned on sharing at all. 

 

And now even though he is home from the hospital stays we face new challenges with both of them and all the festivities. Now I face the holidays head on with dyspraxia, ADHD, SPD, and many other challenges.

Going to parties and loud stores is too much, seeing Santa is just impossible, shopping is a complete no go with kids and baking cookies involves getting messy, which is not good.

 

All of the traditions I dreamt of and thought were what I wanted and what was important to my family, my kids, have been replaced. I have learned that my kids are special and what makes them special is the way they see and feel the world.

 

And our Christmas traditions are now made around them.

 

-Walking for Make a Wish under the Christmas lights of Tanglewood because Zach was wish kid

-Drinking warm chocolate (because temperature is a Big Deal) with whipped cream, eating popcorn and watching Christmas Scooby Doo

-Watching Santa on TV and cutting out magazine pictures to make our lists (we can't write words yet)
-Finding the Elf on the shelf and telling him what they want from Santa (because Santa is scary in person)

 

I look at other families and wonder what it's like to be able to stand in line and wait for Santa. I always think it would be nice to have those pictures. But wondering and wishing for the normalcy for my kids doesn't make me love our Christmas time any less.

The season is so much more than those family traditions and the perfect gifts

For me, its about how far we have come this year. How my 6 year old couldn't even write his name 10 months ago but now can sign the Christmas cards. How this year, they love Christmas music and want it played all the time. 

Its about them decorating the Christmas tree, and not thinking how all the ornaments are cluttered together and how there are more candy canes than lights on the tree. 

Its looking at the tree and seeing the most beautiful tree in the world, how its perfect in my eyes. 

And yes it does look like a 4 and 6 year old decorated it,

but I would never want it to look any other way.

 

When Christmas day comes and my boys wake up to find that Santa has came, and their smiles light up the room, that's how I know its worth it. 

Having a child with special needs is hard and challenging and sometimes all you do is wish for the normal. But then realize that to you they are perfect and no amount of normal could change that.  

And even though I don't have the family traditions I thought I wanted, I have the traditions I love and cherish and wouldn't change for anything.




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On your way...

I am so proud of you. 

My miracle baby that came into this world 8 weeks too soon, you have just finished your first week of Kindergarten. I feared these days. With all your struggles and your differences, the days of sending you off in the care of others and me not by your side to hold your hand and say it's ok. You are growing up and I don't know what your future brings but I am so proud of you for where you are. 

You amaze me everyday. I saw you kick your legs on the swing yesterday, that is such a big step! And today your teacher told me that you played in PE! It's the little things that make me proud. You will never have to win awards or come in first place to amaze me. I find amazement in the things that you are getting better at, the button that you couldn't work yesterday but today you got it. The letters that I found you wrote on a piece of paper all by yourself, and the shoes that you put on and got them on the right feet. 

You are a miracle and you will accomplish great things. 

I am so proud of you. 

Lucas birth til Kindergarten in pictures-

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Same story...different authors

I am so over the meltdowns, the screaming, the whining, the time, and the energy. It is draining me, all that I have, everything that I am is going into surviving the days. And this is just my side of the story, I know his is the same.

I'm tired, I'm frustrated, I am over the world not making sense, it's too loud, there are too many people, places, sounds, smells, don't look at me, you're new, I don't know you, get out of my space, I can't control it, the energy... I am done... this is his side of the story.

We write the same story and yet we can't read each others words...

He just wants his world to make sense, but nothing does, his body can't process the smells, sounds or even the thoughts on what each day will bring. When he sees new people he hides, he won't talk to them, no matter how much coaching. When his routine or schedule is off, it's all downhill. When a simple drop of pancake lands on his shorts...the day is ruined, and it's not about the pancake, it's all about his world not being in control.

I wish I had a magic wand to make it better, or at least to make sense of it. But I don't, I have to play the guessing game to try and figure out what to do, or when to do it or how to prevent the next meltdown or outburst of anger. I wish I could just make his world make sense to him, I wish I could just slow it down, and say it's going to be ok.

But then it hits, the meltdown.. not the typical 3 year old, "I didn't get my way" temper tantrum. No, the "I have no control over what I am doing nor do I at this point even know why I am doing it" meltdown. And all I can do is sit and wait, wait for the storm to pass and the sweet calm loving boy to come back to me. The calm has to take over. And then its gone. And the reason why it began in the first place doesn't even matter, it was most likely not the root of the meltdown, it just set it off. It was like the icing on a cake, all of the layers were made and put together and then when the icing was laid, it crumbled with all the pressure.


Thats' my boy...

His world, this world is overwhelming. And he can't make sense out of it, he can't control it and he crumbles.

Comparing him

I want the very best for him and I want him to succeed in everything and to be like other kids his age.

I think that is the hardest part for me, He is not like other kids, but it so hard to not compare. It's frustrating to see classmates of his or friends' kids succeed in things way before my son. I feel like a bad parent or failure because my son can't tie his shoes, can't ride a bike, that he doesn't know his ABC's. And it's hard to explain to other parents when they ask, is he in kindergarten? how is school for him? how old is he? because you know they are asking to compare...

"No he hasn't started kindergarten, he wasn't ready and quite frankly, he isn't ready now. How is school for him?- great question, school is HARD, he can't concentrate, he can't sit still. His friends are writing notes, and reading.. he knows, he sees what others can do.. he knows what he can't. And it frustrates him, it saddens him. And he won't tell you, but he tells me...he is embarrassed for others to see his struggles." And it is not fair!!

He is 6 years old and has no idea what the world will bring. He has an imagination that soars and can build a 5 star building with any objects you give him. He will be my engineer, my architect. But honestly he wants to be a doctor. He always has since his baby brother was sick. I can remember the day I found out, I walked into his pre k classroom to find his drawing of himself that said "I want to be a doctor to make my brother better"

That is the quality that makes him special. His heart is far bigger than his classmates, he excels in loving others. No it doesn't matter that he is 6 and doesn't know his alphabet, or how to write words or how to read. He will get there, he will learn all the things that his classmates know. What matters is that he will love everyone, he will know that everyone has different challenges they face but that we are all special.

I am learning to not compare him, which is hard but because I know what and why he is special and I know that he isn't like everyone else and will never be like anyone else.. because he is him and he is perfect.