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Parenting a child with developmental disabilities

By Edited Feb 13, 2014 1 4

 I am in no way an expert on this subject. I have a son who has autism. I only know my experience. Sure I've looked at some magazines and tried to read some books, but nothing really touched on the challenges, or my feelings about them, as I faced them. Maybe it is because most of these things are wrote by professionals who are well-informed, yet well removed from these issues. I don't know, but I felt compelled to write this and I hope someone, somewhere, gets something out of it.

  My son came to live with me three months ago. After a rash crime spree and a battle with drug addiction, his mother was incarcerated. I don't know what will happen with that, but she was booked into jail on five counts of robbery, some of which were with a gun. It seems like my son will be with me from now on. I had been an active participant in my son's life, I went to speech therapy with him, I had him at my house on the weekends and I volunteered in his developmental preschool almost every week. But after he lived with me for a little while, the challenges really started to hit home. He does not speak in complete sentences and it's hard for him to convey any kind of complex idea. It breaks my heart to see him struggle. I almost want to tell him not to speak when we are in public, but I know this is not a solution and is about my lame fear and pride. We taught him sign language and as soon as he was able to communicate on a basic level his fits and tantrums stopped almost overnight. When he came to live with me he was not potty trained. My son was 5, still wearing diapers. This was unbearable and heartbreaking. My girlfriend and I were able to potty train him in one week, and within two weeks he would get out of bed to use the toilet in the morning all by himself. This by itself felt like a miracle. We just did the same thing you do with every other kid, we said that's ok when he had an accident, and we made a huge deal about it when he used the toilet (He still gives me a high-five every time he uses the restroom). This showed me that a large amount of his delayed development was due to neglect. This broke my heart and gave me hope for my son at the same time. 

  Meals were a nightmare in the beginning. When he came to live with me he was a very selective eater, i.e. noodles and Doritos. His mother decided early on during his life to raise him as a vegetarian, but her ideas were a little skewed. It turned into whatever was easy and he was never pushed out of his comfort zone even a little. I am very serious about the dry noodles and Doritos (and peanut butter). It was very painful to sit at the table with him. He would not eat anything we put in front of him without a lot of coaching. It turned breakfast, lunch and dinner into a chore. We would have to be stern with him and tell him he had to eat it, and he would eat it begrudgingly. Now, three months later, if you ate dinner at my house you would never guess that this was once the case. He smiles and eats everything on his plate without a second thought.

  He follows the conversations and visits with us the best he can. He says "wow" and "that's funny!" a lot. Expression of thoughts and feelings is totally new. Today I fixed an Xbox 360 while he was outside and when he came in the house he seen it sitting by the tv. He said "oh my god...you fixed it! wow! I like it daddy! good job!!" I think it was the most I have ever seen him articulate his thoughts and I started crying as soon as he went back outside. I had once feared my son would never be able to tell me what he felt or thought. That he would be trapped in his mind. I could tell by his facial expressions and eye movements that his mind was active, but he wasn't using words, even at three years old. Today I no longer have these fears.

I try to focus on the good. Since he came to live with me his vocabulary went from 20 words to about 75.  Over the last few months I have incorporated a healthy, balanced diet and he will now eat almost anything except for yogurt (It's a texture thing). He plays with the neighbor kids almost everyday. He takes out the garbage all by himself and puts a new bag in the can. We play Xbox 360 Lego Star Wars together and he understands two-step directions now. All in all, I feel I'm blessed, and this horrible curse has just turned into a small bump in the road.

My girlfriend works with developmentally disabled people as an independent living Advocate. Without her help, I never would've been able to get through this. She taught me to push his limits, to do what is right and treat him like a normal child. She told me that he would be ok and he would catch up to the other kids. She introduced me to other adults who have the same disorder as my son. She showed me how they live normal, happy lives. Some of her clients simply need help with checkbooks and grocery shopping! This gave me a ton of hope and a new perspective. 

I hope you have gained something from this article outlining a small part of my experience with raising a son with Aspergers.

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Comments

Jul 20, 2012 6:07pm
LavenderRose
Your son is very lucky to have you. Parenting a child with autism is a rough road, but both you and your son will come out better for it. I am proud of you for stepping up the plate.
Jul 20, 2012 7:22pm
JoshKnowsBest
Thank you!!!
Aug 4, 2012 4:48pm
Shivon
This is a great article for everyone. Before I knew anything about autism I came a children who I though were just acting up because they were spoiled; little did I know. This is a wonderful article, and thank God for your girlfriend and all the help she has provided in helping you to better understand, raise your son.
Aug 4, 2012 11:56pm
JoshKnowsBest
Yes indeed!! Thank you!!
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