This week we are going to focus on Autism Spectrum Disorders. Today, we will hear from a mom who has a son with Asperger’s Syndrome. She shares with us what she wishes others would consider before judging her situation, and how parenting her son is a blessing. On Wednesday we will hear from a speech-language pathologist. She will give us some helpful hints in teaching your children to be more sensitive to individuals who are on the Autism Spectrum.
So here we go…Day 1
“See that you do not despise one of these little ones. For I tell you that their angels in heaven always see the face of my Father in Heaven.” Matthew 18:10
By Guest Contributor Julie Delucchi*
Parenting is hard no matter what your situation may be. But in my experience, parenting a child with Asperger’s Syndrome (which is a form of high functioning Autism) can feel as though I wake up to a puzzle every day. Some days, the pieces fit together exactly as they did the day before. Some days, the pieces are completely different from the day before. And some days, it seems as though I am trying to put the pieces together backwards, upside down and blindfolded. There are people who understand and accept our situation, and then there’s 99% of the rest of the world. People who accept my child accept him for the way he is, not the way they think he should be. Our family has faced many cruel challenges, not because he is on the Autism Spectrum, but because people are not informed about Autism—especially high functioning Autism. Trevor is “normal” looking; he does not in any way appear to be disabled. I am under the impression that there are many people who think people with Autism are like Rain Man or Forrest Gump. I can assure you my child is far from either of those two stereotypes. I try to be level-headed and give people the benefit of the doubt that they are just not educated about Autism, but sometimes I seriously wonder why people think they can make inappropriate (and sometimes even extremely hurtful and offensive) comments to me either about my son or about my parenting. I have made a list of some things that I would like to share with you about dealing with parents of children with Asperger’s Syndrome.
1- Asperger’s Syndrome is a medical condition; it IS NOT a choice. I realize that some of the things my son does can appear to be a “behavioral problem,” but I can assure you that it is part of his disability. He is deficient in social graces, therefore, if he has a tantrum in public, it is because his brain does not tell him that a tantrum at age 8 is not appropriate.
2- If you are aware a child is on the Autism Spectrum, please address it as so. Using terms like “he has problems” or “he has issues” is not appropriate to say. A few years ago, a preschool director told other parents that our child was “mentally retarded.” Mental retardation is another medical condition, but it is not the medical condition my child has. Therefore, it is not appropriate to use that term to describe a child with Asperger’s Syndrome.
3- Please do not offer unsolicited parenting advice. (Have you tried ____? Do you know about the “Autism Diet?” Have you heard about ____? Yes, I have heard about and tried many things. In fact, researching Asperger’s is part of most days around my house.) My husband and I are not bad, uneducated parents, and our child’s Autism is not a result of our parenting. We parent probably much differently than most other parents in a lot of ways because of necessity. When Trevor was 3 years old, I will never forget the horror of a lady parked next to me when she saw I had my child in a headlock in the Wal-Mart parking lot. What she didn’t realize is that had I not gotten a hold of him like that, he most definitely would have run right out in the middle of traffic without looking. His brain had not developed any form of fear at that point, and it was either grab him like that, or watch him get ran over. I know it was probably not acceptable parenting by most standards, but if people had only known how strong and how strong-willed he was, I doubt there was a parent who wouldn’t have supported that decision at that time.
4- Our lives are not a TV show. I love watching Parenthood and The Big Bang Theory, but Max and Sheldon are characters on television shows. Yes, there are some similarities, and I am glad that there is something that is bringing some awareness of high functioning Autism, but we live real lives. Our child has Autism 24 hours a day. Things rarely work out perfectly in our lives, but we still consider ourselves to be blessed beyond measure.
5- I think it is important to understand that a lot of us with children with Autism live very isolated lives. This was especially true when Trevor was really small. My husband and I still don’t socialize much. After having two churches ask us to leave because of our child, we did not even attend church for several years. On the bright side, after Trevor asked and asked to go to the church where my daughter went to Mother’s Day Out, we started going. It has been a wonderful experience. The people there have been extremely nice and tolerant, and I know that God lead us there.
6- We plan as much as we possibly can. Change is hard for our child, so if we stick to a routine, life runs a lot smoother. If you have plans with a family who has a child with Asperger’s, and a change in plans is going to occur, please let the parent know as soon as you can so that the child can be prepared. We went to a party one time that was supposed to be with just a few people Trevor knew. When LOTS of additional people started showing up that he did not know, I could tell it was a matter of time until he was going to have a meltdown. So we had to leave which led to a meltdown in the car, but at least it wasn’t seen or heard by a bunch of strangers.
7- Just because you might know a child with Autism does not mean you know about my child with Autism or someone else’s child with Autism. They truly are very unique, but this does not make them “weird” or “odd.” They may have qualities that appear to you as “weird” or “odd,” but I’d be willing to say that there isn’t a person who doesn’t have at least one behavior that others might look at as being “weird” or “odd.” I know that God made my son the exact way that He wanted him to be, and I will always consider both of my children to be gifts from above!
8- And finally, I highly urge you to educate yourself about Autism Spectrum Disorder. Whether you can accept it or not, ASD diagnoses are on the rise, and you already are affected by Autism. I don’t know what is causing children to have Autism, and I do not know why I have a child with Asberger’s Syndrome other than the fact that it was God’s intention for me and my husband. I had a normal pregnancy, I did not drink or do drugs, I ate healthy, I followed all the guidelines of how to have a “normal” pregnancy. But I have a child with Autism, and to be very honest, I would not change Trevor in any way. Despite the fact that at times parenting has been the hardest thing I have ever done, and people have been blatantly cruel, and there have been some days I wasn’t sure I’d be able to get out of bed, I always got through it.
I love Trevor with every ounce of my being. I see the way he looks at my 102-year-old grandmother and the way he treats her with dignity and love, and my heart just about explodes with happiness that he can see her with such pure love. I look at the way Trevor loves the Lord and craves His word and wants to learn about Jesus. I look at the way that Trevor tries to help people by holding the door open for them, and he does it just because he feels it is the right thing to do. I look at Trevor and I see the love he has for me and for my husband, and how he frequently tells me how much he loves us. I see Trevor as the handsome, highly intelligent little boy who has brought our family so much joy. It is my desire that other people (not just a select few) will look at my son and see that he is a gift from God, perfectly made, and a blessing to all who get to know him for the amazing person he is.
*Julie has two awesome children, Trevor (8) and Audrey (4.). She has lived in NWA her entire life. She has been married to her wonderful husband, Matt, for 13 years. And after 12 years of teaching preschool, she decided to be a stay at home mom starting in 2010. She says she loves her life and is blessed beyond measure!