A Letter to my Big Sister

Obviously Dacotah did not write this himself, but I was approached by his big sister last night to which she said "it's hard because he has autism and I can't and don't understand him". So I tried to address the things she sees and hears from her brother's potential point of view. It may be beneficial for others too, hence why I decided to share it on his blog.

Dear Sissy,

I wish I could talk so I could help you understand me so much more than you do already.  Mommy told me you don’t understand me because I have autism and developmental delays which keeps me from talking to you the way you wish I could. Trust me I wish I could talk to you in a full sentences the way your friends talk to you every day. But God had a different plan when He decided to make me.

I am not stupid, despite what some people may think or say. I still have feelings just like you. I get angry, sad, hungry, upset, loved, just like you do big sister. I can’t talk in full sentences, which makes me very frustrated and I scream sometimes for a minute until you figure it out, sometimes for longer because mommy and daddy can’t understand me either. These things can upset me too because I feel like I am stuck and cannot tell you what I feel inside. You are not alone in not being able to understand me because I don’t understand it all either. I do understand what you say to me or about me, did you see I went to pick up the ball you asked me too, or I went to hide during hide and seek?

I know you get upset because it seems as though mommy and daddy and the therapists spend a lot of time focused on my needs. But did you know they spent a lot of time one on one with you when you were small? No, you didn’t need the therapists like I do, but that’s because God made you special too. He made you with a heart full of love for others. You have a big heart and want to help people and that is an amazing super power that God gave you. Did you know some people don’t love at all?

Well just like you I have a special gift too, I can hear and see things that you see and hear differently. The sun light that shines down gets into my eyes, it is soooo bright that it makes my head hurt and all I can do is scream because I can’t tell you what’s wrong. Did you hear the rain outside on the roof, while the cat scratched the carpet, and riley barked to go outside, or the hum of the fish tank, and my tablet music going all at once? I bet you heard just my tablet because it was the loudest. Because of my special gift I can hear everything all at once. For someone my size that is scary and so I freak out and cry. Do you cry when you get scared?

Did you know I love it when you and your friends play with me instead of ignoring me? Imagine yourself in gym class and the other kids get picked but you have to sit out. Does that make you sad? The same thing happens to me. I love to play with you even if I can’t talk to you. I enjoy the moments we get to play together and I wish they were more often. I love when you play ball with me, when you play hide and seek. Did you know, you could even be a part of my team and help me learn how to talk to you and everyone else. Wouldn’t that be super?

I know you don’t understand why mommy is tired all of the time. I know so I will tell you, last night she woke up 3-4 times because I kicked her. I woke her up wanting water. I woke her up at 3am because I wanted to get up for the day. So she gets up too even though she is tired because I am not big enough to be up by myself yet. You are a big girl and she doesn’t have to get up with you unless you are sick, but I bet if you needed her in the night she would sit up with you too. Mommy has to give me medicine that helps me sleep, I have a super natural ability in that I don’t have to sleep as much as you do. Which makes everyone else super tired and very cranky.

There are some things that you do to me that makes me very upset, like when I tell you no when you try to change my shows on my tablet. When you tell your friends no, do you get upset when they don’t? Same thing goes for me. I don’t like being touched, so if I pull away from you please leave me alone. Don’t pick me up if I am screaming no no no. If I want a toy that you are playing with, could you offer me a different one, or perhaps could I play with that one just for a minute, I promise I will give it back.

You know what else? I know you wanted a little sister to play with. I have heard you tell mommy that several times. God decided to send me instead of a sister, because he knew we would grow up to be best friends. He knew you could give me so much love, because of your big heart. So He personally selected you to be my sister for all my life!!! So in the moments when you are angry and frustrated, and it seems like I get all of the attention, remember that you are important too. 

You are my BIG SISTER and I LOVE YOU so very much. I cannot wait until I can talk to you so that you understand me, but in the meantime we can play together, and I can learn, even if it takes me a little longer, we can get there one step at a time.

Love your little brother. 

The transition to IEP begins

While I can't say I am overly excited about losing Dacotah's current OT, the time has come that in 11 days he will transition to his IEP goals. I am nervous and excited. Excited for the progress he has made, but nervous for what he is doing/not doing that he should/shouldn't be doing.

I'm going to be honest, I am going to miss his OT Ms. Mel, or Ms. Moo as Dacotah loves to call her. When you get use to seeing someone every week for months, it's really hard transitioning to a new OT with new thoughts and ideas. Not necessarily a bad thing, but I have always had an issue with change. (Unfortunately at age 33, it has not gotten better). So next week will be her last "official" visit.

Thankfully he gets to keep Ms. Pat, who does his physical therapy because she is part early intervention but also works for the school, so that is one change we don't have to transition to.

He will have Ms. Courtney for speech and Ms. Kelli for OT (OT through school starts in March when Ms. Kelli gets back from a leave of absence). I met Ms. Courtney today and it's a sigh of relief when you meet someone and you can tell they honestly care about your child. Instead of diving right in with Dacotah she is going to introduce herself in two weeks with Ms. Pat during his PT visit and let him warm up. She asked a lot of questions about what we had been working on, what we are currently doing, and what our goals are.

He will see Ms. Pam for his developmental goals at his preschool.

Everything is set up for once a week every week until summer. At some point before I am making a list to give to his physician's to see about having extended summer. We have come WAY TOO FAR with progress to go 8-12 weeks with nothing. Granted I am a hands on parent and we could do it, but the support system is much easier with everyone working together.

His talking is starting to mumble again. Maybe it's random, but it seems as though 3 weeks after the last T shot is when he stops talking as much. Maybe it's just the full moon. But in any case it is a week of frustration when he just echos back or just says what he wants. Getting him to focus for more  a few minutes the past week has been a total loss cause.

I have said for a while he lines things up. A LOT, this is not a one time and I'm jumping to the conclusion something isn't right. This has been going on for years. At least 2 and it's not improved. I originally thought it was typical child play. But I have had several mommy friends both old and young who state their kids never did that (especially at his age) nor at the rate he does it, it's one of the more clear autistic traits that he has. Today after his appointment with endo for his third shot (yep it's already been 3 months), I took him to the bookstore. They have board books that have wheels and look like cars. He lined them all up once, then drove them to their new location and lined them up one at a time.

While at the bookstore I did find a book about Autism, just flipping through some of the pages, there are signs that are there and they are prominent. But you know what the goal is to give him all of the help and support that he needs, continue working with him to develop his vocabulary and work on the social skills. Thankfully we have a great start with his receptive language being right where it needs to be.

He stopped saying his colors, or I should say he stopped correctly saying the right color. I am hoping it's just a phase and that it's not "lost" again. I wasn't as structured with him the past week with our trip to Indiana followed by craziness at work. So we need to get back with that this week.

So in the meantime let's go plan his third birthday party, it's going to be this coming weekend with just his grandparents, aunt, and cousin. The smaller the group the better it is for him. The best part is we can have it at home where he is comfortable and he can come and go as he pleases. He can have a small lunch party with his school friends on his actual birthday and then enjoy all the extra attention we can give him that day. (As if he doesn't get enough already) HA!