I once had a complete stranger call me, a lady who knew of me through someone, and say “if you would just put your son on the gluten free diet you could cure his autism…he would be alright.” Wow!!! Talk about being caught off guard. “Alright”…now there is an interesting adjective. “Alright” falls into the same category as “normal” for me. Both words project an image of how things should be rather than a truth that is achievable. This morning I found my self reading a wonderful article in Psychology Today about this very thing in relation to parents of children with ASD (Autism Spectrum Disorder). So many people offer advice to parents with special needs children but I wonder how many of them take the time to think about how their words are processed in the minds of a parent fighting the battle of a lifetime for their child? I wonder how many people who are offering up such advice have ever walked a day in the shoes of a special needs parent? If you get a chance I highly recommend you checking out the article. Not only because it offers outstanding insight but because you will also understand what prompted my heart to write this post.
“Many parents equate success to having their child act more like a “typical kid,” displaying as few characteristics of autism as possible.”
I can not begin to tell you the amount of times that Matt and I have heard in regards to our son, Santino; “he’s going to ok, right?” “He’s going to be able to talk, right?” “What are you doing to make this better?” “Did you know that if you just (fill in the blank) he would be much better, all better, CURED?” And with all of those well meaning questions comes the neon sign that screams “YOU ARE NOT DOING ENOUGH”. Parents of ASD are trapped in this claustrophobic vortex that has them believing if they don’t try every magic autism bullet then they might just miss the very one that could have been the cure for their child. Because the goal is to make our children “alright” and “normal”…right?!?! That is the American dream, if something is broke we fix it. But how can you give advice on how to fix something if you don’t fully understand it? I wonder how many people actually realize the cost of all the things they are recommending when they tell parents about the new miracle autism cure they read about or heard on the news? Holly Robinson Pete once answered the cost question honestly when asked by Matt Lauer…$150,000 a year…that’s how much they pay a year for their child’s therapy. Last time I checked the average ASD family cannot afford even 10% of that figure. You know what that figure looks like spelled out for Santino…nine years diagnosed at $150,000 a year = $1,350,000…so far. Last time I checked Trump was not my last name so that therapy bill is a no go for my son.
“Mothers of children with autism have stress levels comparable to combat veterans” ~ University of Wisconsin-Madison
Back up. Did you just read that quote? Now reread it? My jaw hit the ground when I first stumbled across this finding. I think I may have even said a prayer of thanksgiving. Not because I put myself on the same playing field as the American heroes who have risked their lives and seen and experienced the horrors of war. Believe me I am no hero and I do not believe I should be equated to those who have rightfully earned the title. However, this finding does show just how hard living with autism is. How brutal it is to want to help your child so desperately but having to come to terms with that fact that every child with autism is unique and there is no one therapy method, pill, diet, or magic potion that will work for every child on the spectrum. What the parent of ASD has to come to terms with is throwing away words like “alright” and “normal”. Those words are subjective at best and when people place pressure on parents to therapy their children to that goal they set them up for failure.
“Oh yes, you shaped me first inside, then out; you formed me in my mother’s womb. I thank you, High God – you’re breathtaking! Body and soul, I am marvelously made! I worship in adoration – what a creation! You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing to something. Like an open book, you watched me grow from conception to birth; all the stages of my life spread out before you, the days of my life all prepared before I even lived one day” ~ Psalm 139: 13-16
Long ago Matt and I abandoned the trap of “normal”. We have worn an armor that allows us to smile and politely say “thank you” when the “did you know” questions come in by the well meaning person who became an autism expert after watching Nightline, Oprah, 20/20, 60 Minutes, or the NBC Nightly News. Walking away from the pressure of “we need to do more” was the hardest but wisest decision we have ever made. It was hard because the mind wants to play the “what if?” game with you and with autism there is always something else you could be doing. However, it was the wisest because we recognized that in a quest to make Santino “normal”, in an unrelenting pursuit to fix him, it would be so easy to forget that our little boy is so much more than his autism diagnosis. Along the way God opened our eyes and our hands to let go of the need to fix Santino. We don’t need to fix our son because autism didn’t break him. We discovered the truth…the one thing that is not subjective is the simple fact that Santino is fearfully and wonderfully made. His being “alright” doesn’t hinge on him looking “normal”, his “alright” hinges on the fact that God created him and He has a purpose and a plan for his precious life. Helping him reach the fullness of God’s plan is what makes him “alright”. There is no better Santino than the boy I see squealing with laughter, the boy whose eyes dance with joy. We do what we can with the resources God has blessed us with. Santino has a wonderful team of therapists, aides,and teachers who have put together a therapy program that will help Santino and we have full confidence that by the grace of God Santino will reach his fullest potential. Notice I said fullest potential not; cured, normal, or all better. We must never lose sight that it is in our weaknesses or what the world calls our shortcomings that God makes us strong. I believe with all my heart that God will use Santino and his autism to bless many. How He will do it, I don’t know, I just know that He will.
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, a honest compliment, or the smallest act of caring. All of which have the potential to turn a life around.” ~ Leo Buscaglia
During a public melt down how I long to see just one reassuring smile…one person who isn’t judging my parenting or labeling my son a brat. How I long to tell the lady in the doctors office staring at my son that she is rude. The secret yearning to make this my Facebook status from time to time; “I love it when you give me unsolicited parenting advice about my special needs child. Your criticism is great greatly appreciated. – Said no mom ever!” How I wish people understood the way their stares unnerve my older son and make him feel uncomfortable to be in public with his brother. This is the why many parents cling to hope of “normal”. “Normal” doesn’t get stared at, it isn’t judged, it isn’t dissected, it doesn’t kick your butt on a daily basis. It also isn’t realistic. What if I told you that your reaction and interactions with a family with autism could make all the difference in the world? Would you sit up and read a little closer? Would you want to know what an ASD parent really needs to hear from family, friends, and strangers a like? I can tell you and it’s really not that hard. Instead of telling an ASD parent what they could or should being doing better, what if we all lifted our voices in encouragement.
“I see what you’re doing with your child and I think it’s wonderful.”
“I know you are already doing so much for your child but I saw this special on TV and they talked about (fill in the blank) have you ever heard of that?”
“I heard (insert the child’s name) say a new word, offer a smile to a stranger, interact with another child, go melt down free, etc. that is so awesome, I can see the progress they are making. All the hard work is paying off.”
These are the words the often worn and beaten down parents of ASD need to hear. They don’t need you to tell them what they are doing wrong or what needs improvement…they already feel inadequate for the job they have. They don’t need you to stare at them during a meltdown…they are already shattered by having to watch their child struggle so terribly. The one thing the family of autism knows for sure is that they are different…no one needs to highlight that for them. That is often a painful and lonely reality. What is the remedy? Kindness. How simple is that…be kind. Parents with children of autism don’t need you to help them fix their child, they need you to show them kindness, love, and compassion. There is no quick fix for autism, no easy or sure therapy method for success. There is a famous saying that states “if you know one child with autism then you know one child with autism.” Autism is unique and different for every single person on the spectrum. But autism is just a part of who these precious people are. They do not need you to fix that part they need you accept who they are as a whole. To see the fearfully and wonderfully person that God has created for a purpose.
“If I could snap my fingers and not be autistic, I would not. Autism is part of who I am.” ~ Dr. Temple Grandin
Success for my child is not dependent on fixing him. Some of the greatest and most creative minds have belonged to people on the spectrum; Mozart, Einstein, Newton, Grandin, etc. In the article I read this morning the author stated that success, like beauty, is subjective…it truly is in the eye of the beholder. For me success will never equate “normal”. Who defines normal anyway? Success for my son rests in the hope that God has created him for a plan and purpose and that He has given us the resources we need to unlock his full potential. I cannot worry about my lack of money or my inability to try every autism therapy out there. All I can do is trust my God and pray bold, audacious prayer circles around my son. My hope rests in the words of Jeremiah 29: 11-13 “For I know the plans that I have for you; declares the Lord, plans for welfare and not for calamity to give you a future and a hope. Then you will call upon me and come and pray to Me, and I will listen to you. You will seek Me and find Me when you search for me with all your heart.” When you see my child do not see a boy broken by autism…see a beautifully created child that needs acceptance, a little extra help, and a whole lot of understanding. See a little boy who has a bright future because God has a purpose for him. He is not a problem that needs to be fixed, he is a person that needs to be loved for who he is.