Real Relationship Advice
We are talking about parenting a special needs kid this week. If you are a regular reader, you know that we are speaking from experience. Our oldest is legally blind, hard of hearing, has left side weakness due to a stroke at birth and is on the spectrum (Asperger’s). Our little girl is now 19 and in college three states away. Many have told us that we did a great job but we must give credit where credit is due. Our daughter is the most stubborn, hard headed, oppositional, pain in the ass we have ever met. And, thanks to that, she has achieved the impossible.
Our daughter was not given much of a chance as a baby. We were told when she was 7 months old that she would not live to see her 2nd birthday. She is a miracle but the reality is we think she heard this and said, “I don’t think so.” She has proven every single doctor wrong. Sure, there are things she will never do. She will never drive a car. She will never have the hand eye coordination needed for fine motor manipulations. She will never be picked first for a sports team. However, all these things mean nothing when you see a 19 year old young woman on her own at college handling her stuff.
There is no secret to how we raised her. We personally think she enjoyed giving us headaches and testing every limit we set for her. She was like any other kid but with no depth perception and a tendency to bang into walls or drop dishes. But, if we were pinned down and asked what we did as parents to support her in being the best she could be, it would be the following:
1. Parent your child to be stubborn.
Our daughter never used her disability as an excuse. Quite frankly she never acknowledged her disabilities until she was almost 17.
2. Do not try to convince your child they have special needs.
When she was younger, she would argue she could do everything like everyone else even with evidence to the contrary. We did not argue with her until she was old enough to advocate for herself. She then needed to accept that there were many things she could not do. Thanks to her Asperger’s she could weigh out the realities and could see her limitations logically. We know that she was annoyed by these things and she can deny she was disappointed but we know the truth.
3. Despite their needs, they do not get to run the house.
Our daughter has a strong personality. When she was a little girl (well, honestly she is still little), she would demand certain things. If we would have allowed it, she would have taken over the home. Luckily for her, we didn’t let that happen. Parents sometimes defer to their kids to avoid the hassle of an argument or time out or just the stress of forcing them to do something. Unfortunately, like any act, it can become habit if we are not vigilant. When we let our kids take over, we make their environment unsafe. It may seem less stressful for us but that only means our kids have the anxiety of running a family.
4. Never let them settle.
We pushed our daughter. We held her to her highest possibility at all times. We never let her give up. Yes, sometimes we stepped in and helped. However, we knew she could succeed. Yes, she has surprised us a million times and we expect a million more.
The purpose of this post is not to lecture to other special needs parents. We are here to tell you that that feeling of despair and the expectations for our kids do not need to be scrapped. They will surprise you. Everyday….
I love this post yet also want to add that these terrific tips go not just for special needs but for kids with all types of limitations.
We have twins and a daughter, and one of our boys is 'on the spectrum'...and I couldn't agree with you more. Our son surprises us everyday. He is also the best behaved of all three of our kids.
There are people out there who spend a fortune in dollars and every minute of their time trying to 'cure' their kids of autism and trying to make them fit into some kind of 'normal' way of being. I don't know about you, but this drives me crazy. As my son said to me when he was 4 "I'm not broken!" And he's not! I've had people ask me if I'm "sad that he isn't going to live a normal life." WTF!? I fully expect him to live a normal life, and to enjoy doing it.
You guys rock...I love your blog! Keep up the great writing!
@Chickenpig2 I think that is a great attitude, but if you have a child with autism that has serious pain you will do everything you can to make it better. I spend a lot of time and money healing my son, and you know what, when I treat his medical problems his autism goes away. When I treat his chronic pain and inflammation he gets better and when I treat his gut problems he does better. So I'm not trying to cure him, I'm making him healthy and wen I do we also get the added benefit of his autism symptoms going away. If you child had cancer you would treat it, same with his autism symptoms. We treat them. i love my son more than life itself and will do everything I can to help him. Making him healthy is one of those things.
@mehmig @Chickenpig2 Autism was changed to Spectrum Disorder because these kids fall under the umbrella which includes from the most severe to mild. One's experience with autism is never like another's. @mehmig it sounds like your child was very involved physically. That isn't the treatment @chickenpig2 is talking about. There are some people out there trying to cure autism with radical treatments. Like your child, my daughter had serious physical issues that required intervention from mobility to the pain from the constrictions from her left side. All this exacerbated her autism.
@Chickenpig2 Agreed. We did have our daughter have PT and OT but that was more for the blindness and stroke. She is now at CSU where Temple Grandin teaches. As Dr. Grandin says, "Autism is an evolution." My daughter agrees. They aren't broken. They are like performance cars- they need some extra and special TLC.