One of the most difficult things for me during this journey through PDD-NOS (Autism for simplification purposes) has been this feeling of isolation. I don't know many people who have children with this type of diagnosis and I know even fewer that have the same spiritual outlook that I do. This has led me to feel extremely alone in this. This is not to say that we don't have people that are supporting us...we do, and we greatly appreciate all their thoughts, prayers, and words of encouragement...but there is something to be said about someone who can look you in the eye and you just know that they understand because they're walking that exact same path.
Why don't I get involved in some sort of support group? Huh. Good question. I often finding myself reevaluating my reasons for this. We have an Autism support group here in the Black Hills and I have a number of reasons for not getting involved to this point...their website is difficult to navigate, their meeting times are inconvenient, they don't have a faith-based approach to this disorder. This last reason has been the most "valid" reason that I have clung to and is also the reason I have yet to pick up an informational book on the Autism Spectrum Disorders (ASDs). It has been my perception that the approach to treating and dealing with Autism and related disorders are very much child-centered. Let your world revolve around the child...it will be much better for everyone in the long run. My question has always been: Will it?
The fact of the matter is, this world does not revolve around them. This world and all that inhabit it (including us) were created by God for the purpose of bringing glory to His name. If I treat my child like he is the center of the universe, he'll start to believe it, and that doesn't leave any room for God in His rightful place. I'm not going down that road...so I haven't even tried to look into anyone else's solutions to our "problem" and I've prayed for something else. Something...someone who knows what I'm talking about, who feels the same way.
Over these past few months the Lord has provided answers to these prayers. A coworker brought me an article one day out of our local paper about a woman whose son was recently diagnosed with Autism and who just wasn't finding all she needed from traditional support groups or books. She decided to start a Faith-Based Autism Support group for families who need something a little more than what the typical support group offers. This group recognizes families' need for prayer and encouragement from the only source of absolute truth - God's Word. I started to see some light in the isolated darkness this diagnosis has brought on.
In her article she mentions a book that helped her come to terms with her son's diagnosis while giving her assurance that God has purpose and, even more so, blessings for Autistic children and their families. The author's name is Kelly Langston and her book "Autism's Hidden Blessings" talks about her journey through Autism while relating all of it to God's Word. I researched her a little online and after reading several of her blog entries decided that she would be someone I could relate to...both emotionally and spiritually. So I decided to order the book. I also noticed she was going to be doing an online study of the book starting May 1st to provide more insight and encouragement for families dealing with Autism. Perfect. Exactly what I need.
The book came and we got busy. Sell the house...remember? So as soon as the book showed up at my door, it went in my bookshelf with the door closed. Sell the house...hide your clutter. Well, things have finally calmed down and this morning I finally remembered the book. As I was reading the introduction all the memories of dealing with Will's tantrums before we knew there was an issue and then the heartbreak once we finally learned there was "something wrong" came flooding back. And then I remembered the study...it's May 1st! After signing up (thankfully she's not closing registration until Friday!) and reading some of the entries from other mommas, I was encouraged and the darkness of isolation started to fade even more.
Along with these more straight forward answers to my prayers, my whole thought process on the established Autistic community has changed. I was discounting anything written by anyone without a spiritual, or more importantly, a Biblical basis, and I've come to realize it wasn't fair...to the people who have devoted their lives to this disorder, but especially to my son who may benefit from some of their suggestions and advice. I realized that I can apply the same Biblical practice of testing it speaks of in 1Thes 5:20-22 while wading through the mounds of information on ASDs. I can view everything with spiritual goggles, testing all I read against my one standard of truth and holding on to the good. After all, the program we've had Will in for the past two and a half years has been based on much of this research and I cannot deny the progression we've seen in Will.
So today, I'm thanking the Lord for His blessings...for the encouraging phone calls and emails, for this support group, for this book and study, for the researchers who continue to find ways for us to connect with our children, and, yes, even for Autism itself. Much of our decision for me to stay home more was fueled by Will's diagnosis of PDD-NOS...so I could do all that needs to be done to help him. So I'm diving in...I'm getting informed...getting connected...because (to borrow the words of Kelly Langston), "Will, I'm coming to get you."
For those interested, it's not too late to sign up for the study. http://kellylangston.com/