I don't "link up" to other blogs, but I thought this would be a great one to do.
Kelly's Korner Blog
Moms of Special Needs Children.
Yep, that's me!
I thought it would be comforting or resourceful to other moms who have younger special needs children, since my special needs child is now 19.
For me, the only time I feel not alone in this, is when we're at a Special Olympics event or in his Life Skills class. I hope by reading this, you will feel that you are not alone.
Where to begin...
My love. Who he is.
Austin, 19, bright eyed, full of laughter, and joy.
He has a lot of loves:
Pizza, well ANY food! The boy can eat! Drawing/coloring. ALL things Sponge Bob! Watching movies in his room! He's got quite a collection. Star Wars, Spider man, action figures. Singing. Backsteet Boys, Insync, Green Day. If you come over, he'll call you to his room so he can sing you a song from either Hercules, High School Musical (1, 2,or 3), Hairspray.
He wants a girlfriend, job, and a car. He WILL tell you that within the first five minutes of meeting you!
I had a normal pregnancy. At age two weeks, we found out that he had Hypothyroidism. He was immediately put on Synthroid medication and has taken it every single morning since. He met all his milestones at a normal age. He walked before he was one. He was my first born. I didn't see any difference in him until he was four. I tried not to compare him to other boys his age. Tried. But at play groups, he sat with all of us mommies and played with the younger siblings, the babies. He played with their toys. Finally I quit going to playgroups and putting him into sports because clearly he wasn't going to play with the boys or play the sport.
He went to daycare. He went to a private kindergarten, at church, then onto public kindergarten. That year, age 6, is when he had his first absence seizure (pedi mal. staring/stiffening kind). Testing was done, medication was prescribed. They were pretty much controlled. During this time we found out that he did have some learning disabilities. Nothing major. Auditory Processing disorder and some occupational and speech therapy. He would be pulled out of class for a little bit each day for resources through out his school years. Age 8 came. He had his first grand mal seizure. We were not there to see it. His great grandmother was. Her words still come to my mind often, "I thought he was dying". Since age 8, we've tried so so so many seizure medications. The longest he goes without a seizure is two weeks. He has them often. At times 7-10 a day. There is a percentage of people who never have complete seizure control. He is one of them. Epilepsy is scary. Yes, he has them places other than home. We've been shopping, eating out, beaching it, vacationing. You name it, he's probably had it there. He does get hurt. Sometimes seriously. Stitches. Then there are times when he has one and bounces right back like it never happened. He doesn't know when he's going to have one or when he had one.
School continued to be a big struggle. The older he got, the difference between him and the other kids his age got bigger and bigger. Many many many tests later, he was diagnosed with Mental Retardation. It was quite a blow to us. When he was in 5th grade, we put him in the special education class, Life Skills. BEST decision ever. It was like a whole room of Austins! Talk about comforting!
We have had the best experiences with his schools! They've been fabulous to him and us! Helping him everyday and helping us to know what's next. He even gets to do Special Olympics. His favorite is Bowling. He's done bowling, track, and basketball. He gets to stay in the public school system until he's 22. He receives school credit to be classified as a grade level. He's 19, a SENIOR, and will walk the stage June 2014! Then, he goes to a transitioning center off campus every day until he's 22 years old. After that? Well, we shall see. That's the scary part.
It is very hard to have a mentally disabled child. It's isolating, it's heartbreaking, it's long days, it's confusion and questioning, draining! We have bad days, we have good days. But in the same breathe I can say that it is so wonderful! We have learned so much. Grown so much as parents, a couple, as a family. We do have two other kiddos and I believe they have the most precious hearts from having a special needs brother.
As he's gotten older, many decisions needed to take place. Serious decisions. At age 18, he's legally an adult. But yet he clearly cannot ever take care of himself or live on his own. Well, we had to become his legal guardian. Special needs kids/adults need to receive disability since they'll never be able to provide for themselves, Even though, they have their parents and they have insurance and etc. You never know what can happen. Who will take care of them when we're gone? They'll also need an I.D. card. Something else you don't think about.
Oh there's so much more to tell you!
My post is all over the place. I'm trying my best to tell you about Austin. Tell you about our life with him. Tell you as a parent of a younger special needs child that you are not alone! That there is a lot of resources out there. There is a community for your child. You have bad days and cry. That's normal. That's fine. You will have good days too. Just look at your child...what a gift!
My blog is over five years old, so I have many Austin stories, pictures, and videos that you can see.
Please, feel free to message me with any questions. I want to help!