As I sit here I can help but not understand how it's been 5 years since Bry was first diagnose with Autism. But the part I find harder to understand is why people who have been in our lives for his whole life still don't get it.
They don't get that a trip to the grocery store, or Wal-Mart can be exhausting. All can be going well and then he see's something he wants and it's all over. He'll yell how much he wants it..."please Mamma, please, I need it Mamma." And it takes everything we have to finish walking through the store. At times we have to drag him out of the store, kicking and screaming. I once took Bryan to the post office and we had to stand in line for quite a while so he started to meltdown. I had an older lady tell me that maybe I should leave, to discipline my out of control child and return when he could behave. In my usual form, I put my sweet little smile on my face and told her, we'll ma'am my son has Autism, but I'm not quite sure of the reason for you being so rude!
Bryan
at one year.
Then, there's also the weddings we've been invited too. We can't take Bryan to a wedding...no matter how much someone wants him to be there. He does not get along with all kids and if he does not like someone I don't feel the need to make him socialize with them. Most people I know don't think that approach is the correct way to go about it. But the way I see it is, as adults we get to pick who we spend our time with, who are friends are. Just as kids who are what most people call normal. Why should it be any different for Bry. Not to mention that when someone does not do something he wants to he has a meltdown.
Bryan
at 2 years.
What the hell! I'm thinking that was a long time for any child to sacrifice...especially a child who's day to day life is a routine he's made for himself. And for him to have Nikki in his space for 3 weeks is a big deal and who gives a shit if by day 18 he's sick of it.
I have never really had anyone (besides Mr.) believe in Bryan like I do. I believe one day he'll grow up, go to college and have a job he loves. I believe he'll find the woman of his dreams and get married and have kids. But I also know his limits and what he can and can't handle right now. I don't get how some people can spend so much time with him and still not get it. Mr. showed up with no experience with a child who has Autism. But he jumped right in, absorbed everything and it just clicked with him...it took him no time at all (a week, maybe) to get Bryan. To understand what he needs and how to handle things. Now that might be because Bryan attached himself to Mr. from day 1..which is further proof how great of a man Mr. is! But people who have been involved in our lives longer than Mr. still don't get it.
Another thing no one get's is that the baby I brought home from the hospital...the little boy I had for the first 18 months was not the same little boy I had when he turned two years old. I lost that little boy, he left, in a way that little boy died and for several years left me with a shell of a boy who wasn't really there. My baby didn't talk anymore, he didn't like me singing to him as he had before, he didn't like to be in the middle of a room full of people and he would throw himself on the floor and rub his poor little face on the carpet when he was frustrated. My baby was gone and I grieved for him, I held him and cried myself to sleep at night because he was gone, I prayed for him to come back...but he couldn't, he was lost and couldn't come back. And while now I know it happened for a reason, I couldn't help but have so much anger for loosing him..so much anger for loosing what could have been.
How was I to know what he would eventually be. He grew out of that shell I was left with and he's is one of the most amazing kids I know. The child that didn't talk for 2 years will talk you ear off now. He no longer has the echolalia (the repetition of words made by another person) and he loves to be the center of attention again. You can't help but love him, everyone does. He has made so much progress that he's surprised his Autism specialist at school, his speech therapist and everyone else...he's always keeping them on their toes. All the kids in every class he has had absolutely loves him and they don't care if he has a meltdown in class. They do what most of us do, ignore his meltdown and when he's done then he's a part of the class again. Just when the teachers and specialists think they've got him figure out, he's changing again. Every week I notice changes in him and it furthers my belief that he will overcome it all....just as I told the pre-school when they told me he was Severely Autistic.
People have asked me all the time if I wish Bryan could be normal...Bryan is normal, we are a normal family!
And I feel so much better after venting a little.
at 2 years.
We just had Mr's mom spend 3 weeks with us and a friend of mine asked how the kids we're handling it. By this time we were just a couple days away from her leaving. I told my friend that Bryan really wanted Nikki out of his room. Then she tells me, well he need's to learn to sacrifice for the people he loves....
What the hell! I'm thinking that was a long time for any child to sacrifice...especially a child who's day to day life is a routine he's made for himself. And for him to have Nikki in his space for 3 weeks is a big deal and who gives a shit if by day 18 he's sick of it.
I have never really had anyone (besides Mr.) believe in Bryan like I do. I believe one day he'll grow up, go to college and have a job he loves. I believe he'll find the woman of his dreams and get married and have kids. But I also know his limits and what he can and can't handle right now. I don't get how some people can spend so much time with him and still not get it. Mr. showed up with no experience with a child who has Autism. But he jumped right in, absorbed everything and it just clicked with him...it took him no time at all (a week, maybe) to get Bryan. To understand what he needs and how to handle things. Now that might be because Bryan attached himself to Mr. from day 1..which is further proof how great of a man Mr. is! But people who have been involved in our lives longer than Mr. still don't get it.
Another thing no one get's is that the baby I brought home from the hospital...the little boy I had for the first 18 months was not the same little boy I had when he turned two years old. I lost that little boy, he left, in a way that little boy died and for several years left me with a shell of a boy who wasn't really there. My baby didn't talk anymore, he didn't like me singing to him as he had before, he didn't like to be in the middle of a room full of people and he would throw himself on the floor and rub his poor little face on the carpet when he was frustrated. My baby was gone and I grieved for him, I held him and cried myself to sleep at night because he was gone, I prayed for him to come back...but he couldn't, he was lost and couldn't come back. And while now I know it happened for a reason, I couldn't help but have so much anger for loosing him..so much anger for loosing what could have been.
Bryan
in Kindergarten.
in Kindergarten.
How was I to know what he would eventually be. He grew out of that shell I was left with and he's is one of the most amazing kids I know. The child that didn't talk for 2 years will talk you ear off now. He no longer has the echolalia (the repetition of words made by another person) and he loves to be the center of attention again. You can't help but love him, everyone does. He has made so much progress that he's surprised his Autism specialist at school, his speech therapist and everyone else...he's always keeping them on their toes. All the kids in every class he has had absolutely loves him and they don't care if he has a meltdown in class. They do what most of us do, ignore his meltdown and when he's done then he's a part of the class again. Just when the teachers and specialists think they've got him figure out, he's changing again. Every week I notice changes in him and it furthers my belief that he will overcome it all....just as I told the pre-school when they told me he was Severely Autistic.
People have asked me all the time if I wish Bryan could be normal...Bryan is normal, we are a normal family!
And I feel so much better after venting a little.
