Living Life with a Delayed Child

I guess I am writing this so that you who have never lived with a delayed child, get an idea of what it is like. I am also writing this as some sort of therapy for my pity party that I always secretly have in my heart.

L is going to be 3 1/2 years old in couple of weeks. In general, most 3 1/2 year olds are potty trained. My 3 1/2 year old is not. He's working on it, but shows no sign of completion any time soon. He also shows no sign that he is interested in ever being potty trained. I guess I should start at the beginning instead of going backward.

My son was born 2 weeks and 5 days early. Not a preemie by any means. He was a BIG boy and by the way, I do know that my due date with him was spot on. However, he was born very traumatically. That being said there were concerns about brain bleeds or possibly even water on the brain. So, the day after being released from the hospital we had to return to have a head ultrasound done on him. While we were there we were informed that they had found a few cysts on his brain, but the good news was there was no water on the brain, nor brain bleeds. But, even after asking, we never really got the question answered, was there a lack of oxygen to his brain?

Fast forward a bit, L hit all of his milestones during his first year. Then when he was a bit before 2, we really noticed his lack of language. He didn't seem to listen to us, he didn't speak to us. He had the ability to, always speaking gibberish, but never really words.

When you have a child that is doing this, most people in general will say to you, don't worry about him, my kid didn't talk until he was 3 or 4 or whatever, and they are fine now.

But, knowing something was a bit missing, I talked to his doctor. Who wasn't overly concerned but helped us on a path for getting info we needed for L. We had to take him to have his hearing tested to make sure that wasn't it. It wasn't it.

We had someone from Early On come to our house and evaluate him. Although, she was way off in one area (saying he had a gross motor delay) she did see delays. Then we moved onto the school district where he had to be reevaluated. From there we started attending a play group for kids with speech/language delays. Toward the end of the play group, about a year ago, he was retested in a few areas and not only did he continue to have the speech/language delays, he now also had a fine motor skill delay. Which then he was re categorized as having Early Childhood Delays.

Now we have been referred onto the preschool special early education program at our school district's early childhood center. My son has been in this program all year. He has met all of his goals that we set for him. However, we still have a receptive language delay and fine motor skill delay. He also has some behavioral issues. We will be in the same preschool class next year (different teacher and time). He has grown leaps and bounds over the year, but we have a long way to go.

I guess I wanted to write all of this because my heart hurts for so many reasons. I also feel like people think that it's our fault, which I also think it is my fault to an extent. Anyway, my kid, right now, won't be able to do the same thing your kid did at 3. He would never be able to be a ring bearer in a wedding (my daughter was a flower girl at the age of 2). He has a hard time sitting still, so when he changes classrooms in the fall at church I will be a nervous wreck.

I just want my baby to be ok and no one will tell me he will be. No one will tell me as he grows up, he will catch up. No one will definitely tell me he does not have Autism or is on the Autism Spectrum.

How do you teach someone with delays that they have a life threatening allergy???

My son, does not always understand when you talk to him. He skims his toys next to his eyes. He can practically repeat any Max and Ruby episode he has seen. I know you are not supposed to compare him to other children, but when you are around other children, how can you not?

This is probably the most honest blog I have ever written. I don't feel like I can take him all the places I'd like to take him, because he doesn't realize he needs to be quiet or because he needs to sit still and just simply can't.

My heart hurts for lots of reasons. This is the biggest one.