Autism Archives - Fighting for Answers

Coming Home – a letter for my son

David,

In less than 24 hours, you will be coming home. You will have completed yet another stay in a care facility. As much as the facility would have us believe differently, there is no cure for your condition. I explained it once to you, maybe you remember? I also told you there is no cure for the condition you were born with.

You have something called Fetal Alcohol Syndrome. It is within a group of disorder known as Fetal Alcohol Spectrum Disorders. Like Autism, there are wide variations in the symptoms that people with this condition have. This is why we see so many specialists.

Why do you have this?

When your birth mom was pregnant with you, she did a lot of things that were not healthy for you, these included using drugs and alcohol. As much as I want to say that she is evil, I can’t. Without her, we wouldn’t have you. There is a pathway in your brain that was damaged while you were still in your birth mom’s tummy.

So, if you can’t be cured of this, or it can’t be fixed, why are we bringing you home? It’s simple really, you deserve the opportunity to live in the community. Like it or not, the facility is not the same thing as a home, even though it is in a community. Not certain that makes any sense.

For most of the last 7 years, we have fought hard to get you supported services so that you could live outside a facility. For 9 years before that, we fought to keep you out of the facilities altogether. Sadly, we aren’t any closer to achieving that goal. And that is okay. Within the state of North Dakota, which we call home, there is a belief that you can live unsupported in the community. I don’t know if you can or not. But, we are going to sure give it a try.

We won’t succeed if we don’t try.

Until now, every time you have been in placement, you have experienced success. This is owed to the fact that you have staff support 24 x 7 while in care. Which is not something we can replicate here at home.

I don’t know what comes next for us, for you. What I do know is that your mom and I love you very much, as does the whole family. In less than 2 years you will be an adult. Where most young people your age are getting drivers licenses, going on dates, and finding jobs; you aren’t there yet.

We have built a great team over the last few years of people to help us through your life journey. It is my hope and prayer that you are successful. What will success look like for you? Honestly, I have no idea. And you know what? That’s okay.

Sadly, while you come home in 24 hours. It could be another 5, 10, or 20 years before you fully understand what any of this means.

I am okay with that.

Like you said last Spring, “don’t give up on me.”

Love Dad.

Tweet #fighting4answrs

I Guess That’s My Cue

I don’t write about anyone in the family except David, unless I am writing about things he has done to his siblings. Today, I am writing about my son… let’s call him George.

English: People with Asperger’s Syndrome are often preoccupied with particular, specialized areas of knowledge, such as this boy’s interest in molecular structure. (Photo credit: Wikipedia)

George has Asperger’s Syndrome, which falls in the Autism Spectrum Disorder list. He does really well.

Earlier this year, he brought up the idea of attending Boys State. So we encouraged him to apply. He was accepted, but I could see as school ended, and summer began he was beginning to show some anxiety about what Boys State would mean.

We talked about ways for him to be successful. About embracing those aspects of his Asperger’s Syndrome which will benefit him during the time at Boys State. George has a phenomenal memory. I would say that he is highly intelligent, but he doesn’t like to show that off, because, he admits he is afraid of letting us down.

Today during the 5 hour drive to drop him off, we talked, we laughed, and we listened to an audio book. We laughed at the sarcasm of the writer, the wit, and plot twists. Most of all we just enjoyed the time together.

As we neared our destination, I could see the tension ease in him. It was like he decided to let go of the anxiety around the day and week ahead. We stopped at a store so I could get him a tube of toothpaste. I then programmed our final destination into Apple Maps seeking succinct directions to the college campus.

Needless to say, that didn’t work out so well. It seems Apple thought we should drive from our home in the upper Great Plains of the United States all the way to Los Angeles. So I told George to just look for signs.

We reached our destination. Got him registered, paid the deposit… all the fun stuff.

It then started to rain like God was trying to put out the fires of hell.

I had a ball cap, George had a sweat shirt. Water was deep in the gutter and up on the sidewalk. So we waited until it let up a little bit before we raced to the van.

Because of the volume of water rolling through the street and gutter, I told George to wait for a bit while I brought the van up to the door. My boots are water proof to a depth of 6 inches. The rain let up quite a bit, and you could see across the street without imaging that you were seeing the parking lot.

Got my socks wet walking to the van. With a bad hip and an odd gait, I don’t race anywhere.

I got half way to the van and God started pouring more water on the fire. At this point, I could have used a towel to dry off, I had just had my shower. Poor planning on my part, I didn’t have any shampoo. And I forgot my towel. Something you should never do.

I pulled up to the door just as the deluge let up again allowing George to get in the van. He was dry compared to me.

Now, to find the dorm. It was described as the sky scraper on the campus to the north of the building we were in. Now I have seen skyscrapers, but, I guess where we live nine floors could almost be considered a skyscraper. Grain elevators can be taller. We found it, checked in, and sure enough, George is on the ninth floor. Because of my hip and gait, we took the elevator.

When we reached his floor, the floor monitor pointed us to George’s room. We got George situated, he received his room key, and I put it on his lanyard. As I turned to George to ask a question, I handed him the lanyard with the key attached.

At which point, George looked at me and said “Goodbye Dad.” I blinked.

I guess that’s my cue.

Three hundred and some miles later I am home. It was harder for me to leave him there than it was for him to be left there. I am so proud of him for stepping out of his zone of comfort and doing this. I just know in my heart that he will enjoy his time at Boys State. George may have Autism, but Autism doesn’t have George.

George, remember, if you need me, I am a phone call away. I am so very proud of you.