Aug
24

Hello, Madelyn

I’ve got a very good feeling about you. Sure, there’s always the possibility that you’ll have autism like your brother Alex. I just don’t think that’s going to happen. I feel like I know this in my heart like I knew you were going to be a girl when we found out you were coming. It will be another 4 months before we meet but I really think I should try to explain some things to you now.

First, you’re being born into a family that will love you no matter what. Your parents try their best not to repeat your grandparent’s mistakes and we’ve learned a lot about patience and understanding in the five years we’ve been raising Alex. Obviously, I’m telling you the good to set you up for the bad. Well, more like “unfair”. It’s like this: your brother needs a lot of help. You’ll adore and worship him when you’re young and probably for the rest of your life. But there will come a time when you notice that he’s not quite like the other kids. It’s possible that when you’re five years old that you’ll be operating at higher level than him even though he will be twice your age. We’re taking steps to avoid that but you should be prepared for the possibility.

The unfair part is that there’s a strong possibility you’re going to have to look after your older brother in the future. You weren’t made for that purpose. That was not our intention for having you but you will be taught that our family must always support each other. You’re not even born yet and you already have responsibility.

How does that happen? It really does make me feel guilty to think of this. I almost feel like I’m placing some kind of limit on your future paths; like I’m shaping your destiny without your consent or knowledge. I hope you don’t view it as a burden. We’ll try to show you that it isn’t. We’ll try to show you that your life can still be everything you want it to be but that Alex is going to need you as well. He’ll give back to you in his own very rewarding way. He’s a lovely kid and I’m sure you two will get along great.

I just need you to be his protector and at the same time I’ll be doing the very same for you.

Aug
22

“Mommy, your cereal is ready!”

My son, Alex, turned five years old this year in early July. Yesterday, for the first time ever he asked me to play some games with him. We played Duck Duck Goose, Green Light Red Light, and Ring Around the Rosie. Actually, he didn’t even ask me; he insisted. It was such a major milestone for him, and for my wife and I, that I almost couldn’t believe this was my child. These things that are perfectly and normal and simple for most kids are a pretty huge deal when your kid is on the autism spectrum.

My son is high-functioning but still has some pretty bad social and communication problems. Up until recently he’s generally been more comfortable interacting with himself and with the way he sees the world than with other people. He was diagnosed with autism at age three and since then we’ve done the best we could to get him as much therapy as possible. Occupational therapy, speech therapy, music therapy, etc. It was never enough but at the time we just couldn’t do more. I can explain all of that in future entries. Anyway, we finally managed to start him on 4 – 6 hours a week of in-home applied behavioral analysis (ABA) therapy last November. It definitely helped but, again, we knew it wasn’t enough.

My wife finished school in June. We decided it would be best if she stayed home instead of working since she’s pregnant. This allowed us to finally enroll Alex in an intensive ABA program at a private school┬áthat he attends 3 hours per day, 5 days per week. In 8 short weeks, my son has gone from resisting any play that didn’t involve a computer or simple wrestling to asking me to participate with him in children’s games I thought he would never play. Since it’s just him and me playing Duck Duck Goose he pretends there are other people there when he’s going around the “circle” saying “Duck”. My son doesn’t have that kind of imagination. He didn’t have that kind of imagination. Now he does. I’m floored and so proud and impressed with the progress he’s made.

Alex’s speech has also become exponentially better over the last few months. He’s been able to talk and communicate his basic needs for awhile now but most of his conversational communication consisted of memorized phrases. “How was your day, Alex?” “I had good day. Good day in school.” Every day, we’d go through that. He still uses a lot of those phrases but now he’s creating his own sentences. Now he’s describing his environment. Now he’s starting to step out of his own inner world and communicate with us in our world.

The food in the microwave was done but my wife was in another room. The microwave kept beeping lest someone forget that there was food ready and waiting within. It beeped a few times and then Alex exclaimed, “Mommy, your cereal is ready!” My son doesn’t say things like that, doesn’t make those connections and create those sentences. But now he does.