I’ve known for almost 9 years now that autism affects the whole family as a unit, not just the child with the diagnosis. In a recent conversation I was reminded of it. Some people might be wondering what I’m talking (errrr, writing) about. I think everyone who isn’t living with an autistic family member quickly loses sight of how parents and siblings are affected by this and other similar disorders. So throughout the day today while I was with my son (who is 8 and diagnosed with autism) I kind of kept a little journal in the back of my mind about the way my son’s disability affects me and my wife.
I’m sure I’ve forgotten some things. It happens. Our son is our ‘norm’ and our family has adjusted to him to the point that he is normal for us. Anyway, here are just a few ways autism affects me and my wife.
Poop. We changed his diapers till he was age 6. We were fortunate that Braden was potty trained by 6. Some, generally more severe children, are never potty trained. I can’t imagine changing poop filled diapers forever. Trust me, by age 4 there’s no difference between young poop and my own. Those diapers were filled and stank. I’m the kind of person who thinks bodily functions are funny, even hilarious, but there’s nothing funny about changing diapers for so many years.
In fact, when you have a child with autism there are lots of things you do for your child that parents of typical children no longer have to do. Since motor skills are usually a challenge for children with autism their parents have to step up to do everything from feeding, to clothing, to bathing their autistic kids much longer than their typically developing counterparts. It’s often taxing and it takes a greater sense of dedication to your child.
My son recently hit the milestone of being able to dress himself. YES! That was fantastic! He can now put his own underwear and pants and shirt on. Of course we have to lay his shirt on his bed face down for him, but that’s easy. And we have to lay his pants on the floor for him. He can’t put his socks on yet, but his shoes are velcro and he has no problem with that. We still have to zip up any zippers, but he’s getting closer.
As the parent of child with autism we also have to be educating him constantly. My son is almost 9 and he still does not consistently know right from left. Based on that, you can imagine how many other things he doesn’t know. So when we’re out (or when we’re IN) we are always teaching him, again and again and again. Repetition and more repetition. As his parents, me and my wife are his primary educators. So that always has to be in the back of our minds in every different situation. “How can we use this situation to teach him?” we ask ourselves.
Closely related to teaching, we also have to be his therapists. Going to all those sessions with him, and attending classes without him, we had to learn the different techniques of working with areas of deficit. This includes speech therapy, occupational therapy, behavioral interventions, and everything in between. As his parents we have to be jacks of all trades. We have to be well-rounded, yet also we have to be experts. I’ve always said that I’m an expert on autism as it pertains to my son. I’m also an expert on the different therapies as they pertain to my son, largely due to the many great therapists my son has had.
Children with autism usually have many areas of deficit. And watching out for their safety becomes a full time job as well. Yes, parents of typical kids have to watch out for them also, but it’s different when your kid has autism. Regular parents can slack off a bit. They can let their child have much more freedom without worry. When your child has autism you keep your eyes open and on that child constantly. Autism affects so many different areas of development that a child with ASD is at a far greater risk of getting injured. Let’s not forget that some are self-injurious!
For some parents, it’s like having a 2-year-old around. You can’t leave things laying out around the house. The home is a safe zone and some parents rarely dare to venture out because the home is a contained environment. Not so with the outside world. Inside the home, proper precautions have been taken. Alarms are on the doors. Child proof locks are on the cupboards. Knives are nowhere to be found.
As parents of a child with autism I can’t tell you have many meetings we must attend for our son. Most of these meetings are for his Individualized Education Program (IEP), to ensure he’s getting the education that benefits him most. To be accurate to the letter of the law IEP meeting are for ensuring our son gets an appropriate public education. His education has to be tailored to his needs and it’s not easy.
I don’t know any parents who enjoy IEP meetings. I’m not a fan of meetings in general. But IEP meetings are necessary when your kid has autism. When your child can’t speak for themselves you become the child’s voice, the child’s advocate. Often, the education process is a fight. It’s an emotionally charged fight, and your child’s education is at stake.
When my son was diagnosed with autism I was working as a Network Specialist in the San Francisco bay area. Then the bomb dropped. I’m talking about the diagnosis bomb. We were told our son had autism. That’s like a bomb dropping on your world. Our son’s brain doesn’t function properly. He has a neurological disorder. Let me tell you, those are really hard words to hear and even harder word to come to terms with. And shortly after hearing those words my work situation changed. My career path took a left. Now I work in the disability community for a non-profit that works with families and children who have disabilities. Autism has changed my home life and my work life. Autism turned everything upside down! Funny thing is, I’ve gotten used to it being this way. I even like it.
But having a child with autism, or any disability, is not easy emotionally. Sure, over time you learn how to deal with it. The pain of knowing that your child is different and not ‘normal’ fades, but it never disappears. It’s always there. And sometimes I cry still. Personally, I always feel it.
Maybe you remember the old commercial that featured a little tune with the lyrics “I haven’t got time for the pain.” I think it was some headache pill commercial like Excedrin or Tylenol. Well, I don’t have time for the pain of autism. I have to realize that this is the child God gave me andI’m thankful. My son is a blessing. He’s a challenge, but far and away he’s a blessing. I’ll take a little pain with my blessing. I don’t know why God gave me and my wife a child with a disability. But I believe, based on what’s written in God’s word, that He’s using our son to shape and mold us for His Kingdom. In light of that I can’t help but praise the King of Kings.