Where were you the day your child was diagnosed with a special need? Do you remember what was said? What you were wearing? What you were thinking? Guest blogger Amy Stout vividly remembers the day when she and her husband received Kylie’s diagnosis of autism. She describes her response in today’s guest blog and shares some bits and pieces of wisdom she’s learned along the way.

Things learned are meant to be shared…

She wanted to be alone – to think things out –

to adjust herself, if it were possible, to the new world in which she seemed to have been transplanted with a suddenness and completeness that left her half bewildered to her own identity.

— L.M. Montgomery (Rilla of Ingleside)

The day that our Kylie was diagnosed with autism is forever etched in my mind. How I wish that someone who had walked this path before had been there to hold my hand and guide me through the overwhelming amounts of information, well intentioned (but many times misinformed) people, resources and decisions I needed to make.

I am generally very educated, tech-savvy, book-read, and full of life experience, but I never felt more stupid and unprepared in the moments after we left that doctor’s office. I didn’t even know in what direction to head.

They had handed us this lead-weighted piece of information and we were forced to carry it because we didn’t know what else to do. My heart was so heavy and even though my husband and Heavenly Father were with me, I felt so alone.

Immediately after leaving the office, we went directly to Barnes and Noble (we were 2 hours from home) and I bought books about autism that I could read on the drive home. (Because, of course, in two hours, I would be expert on it all and be ready to tackle the world- ha!)

…As a veteran mom in the world of special needs, I chuckle now at the swell and suffocation of panic I felt in those moments. But I assure you, on that day, it was not the slightest bit humorous.

I wish that with the diagnosis, we would have also been given a Maya Angelou-type personality who would have sat with us- relaxed, quiet and peaceful. If she did talk, it would have been in a slow, deep, confident and comforting voice. The kind of person who would have gathered me in her arms and whispered it was okay to cry and that things would be all right. She would have given me a tissue, held my hand and quietly stroked my back till my sniffles had subsided- until I was ready to face reality (and the world).

Instead, like a shock of cold air, Dan and I learned and navigated on our own. (Always consulting the ONE who loves our daughter most.)

Bits and Pieces of Advice

Here are bits and pieces of the wisdom we have come to practice and rely on. If we could go back and do it all again, we would trust this advice…

• Breathe: Take just one minute and breathe. Look at your family – really look at them. Memorize their faces. Dwell on their attributes and the contributions each make to your family. Let it soak in that this group of people will be your closest teammates on this new and exciting journey.
• Be still: Take a few minutes – maybe an evening to just sit in quietness. Think about all the things that you have been told and advised. Decide how you feel (knowing that what you feel now will not be the same thing you feel down the road). Allow yourself time (and give yourself permission) to grieve (knowing that other family members may grieve differently than you).
• Connect with your spouse: Talk, read together, make a plan of action together as to how your family will advance on this journey. It is SO IMPORTANT to be united and in harmony where your child is concerned.
• Choose to “experience” the disability vs “have” the disability. This positive attitude makes all the difference in how you support your child and family. People outside (and inside) your home will take their cue from you as to how to approach this new adventure.
• Educate yourself, your spouse and your immediate family: Check out books from your library- you could spend a fortune if you start buying. Utilize the internet, there are so many resources available.
• As a family, decide how you will communicate and educate extended family and friends. For my family, we felt it would be a more streamlined and thorough approach to update everyone at once. So, we chose to begin a free Caring Bridge site. I knew I would not emotionally be able to handle repeating things over and over again. We also view Caring Bridge as a method to teach and educate our extended family and friends about autism, special needs and sensory issues so there is more ownership, understanding, accommodation and less probing/personal questions.
• Be prepared for the fact that there will be people around you (and most likely in your own extended family) who will use inappropriate language, ask inappropriate questions and demand more of you than you are able to give. Try to have a gracious response ready in advance so you are not caught off guard. A good one is: “I know you will understand, but I really would rather keep that information private for Joey. It is his story and I really think he would like to make the decision someday on whether or not he is comfortable sharing those things. I really appreciate your helping me protect Joey, not everyone is so understanding.”  Model appropriate behavior especially in using proper and appropriate special needs terminology.
• Be gracious, gracious, gracious!!! Be gracious even when your blood is boiling over something that someone has said or done. Choose appropriate timing as to when sensitive discussions should take place. Never embarrass others – make it your priority to educate them and give them the tools to make right choices. Determine to be the one who reinforces and builds up bridges, not the one who tears them down.

Thank You, Amy

How I wish Amy’s advice had been available the day we received our son’s diagnosis. How pleased I am that it’s available to parents now. Best of all, Amy will be back tomorrow with more bits and pieces of wisdom she and her husband have gained along the way.

How About You?

What bits and pieces advice do you want to share with parents about diagnosis? Leave a comment to help them along the path you’ve already traveled.

Part 2

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