Tuesday, January 6, 2015

To Me, 3 Years Ago

This post is inspired by The Mighty, that asked:

"For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?"

I've touched on this idea a bit here in my grand coming out blog party.  I'm a year and a half further along from that post, and here's what I'd say a few more steps down the road.

If I could go back to December 17, 2011, I would want to make myself sit down with someone, a professional or trusted figure, and just let out the complex feelings I tried to put a resolute demeanor over.  We were not surprised to receive an autism diagnosis for our 3 1/2 year old son: we were relieved to have an answer.  It was a new starting point.  What I dreaded most was to see my son diminished in the eyes of others.  I would not stand for that.  A day later we went to a family Christmas gathering where I tearfully declared, "Our dreams and wishes for our son are unchanged." In the essentials of life: love and faith and family, nothing had changed.  Jeremiah had not changed.
We were the ones who would, by almost imperceptible degrees, change. 

We would change our terminology.  From the "welcome-to-the-club" first-person terminology of an individual with autism to the term many self-advocates on the spectrum have taken back: autistic. An educator recently reminded a group of parents at a seminar I attended that the proper term was individual with autism as if we were unfamiliar with the nuances of terminology and the debates thereof.  Bless her.  Self, you'll learn to let these things roll off your back. 

We would change our stance.  When you typically begin to walk down an unfamiliar road of diagnosis, you join a new subculture.  To broadly define the two options of the ASD spectrum, you have 1) Change and Cure and 2) Accept and Support.  Of course these are simplistic categories, but we started unabashedly in the first category.  We began therapies (a good thing) and schooling (another) and paperwork and lastly, an approach to autism intervention.  I regret none of these.  We learned more about our son's unique style of learning and worked through our own prejudices and barriers to parenting a child who approached the world in a way in which we were unfamiliar.  Then, after a few years, we stopped and re-evaluated.  This is the most important step, I believe, to helping your child.  We gave ourselves permission to keep the good and abandon what was not working for our family.  No philosophy or therapeutic approach is more important than the health of the entire family.  We were tired.  We had reached an end of one approach and it was okay.

It's good to go your own way.  This is truly one of the best lessons I've learned from being a parent of a child with a disability.  Doctors and professionals are valuable resources, and it is wise to examine the course of options they present.  But you know your child and yourself best.  Trust your instincts and judgement.  You are the parent.  You do know best.  You are the most vested.  Examine everything, make a choice, and walk boldly in it.  Fear is a terrible motivator.

We would laugh with our son.  With his sly methods of getting his way.  His way of showing excitement-- to rehearse over and over the next time he would see someone or someplace he loved. We would hoot and holler as he took ownership of toileting, a very big deal for any child. I would hear my first "I love you" from my son, as he approached my door after bedtime, knowing this would most definitely get him time in my room.  And his new found interest in drawing, not to mention riding his first big bike and loving it.  Being undaunted by the falls.  Slow and steady wins the race.

We continue to learn that the best place for our son to be is the place where he will thrive.  Right now, that is in a special education classroom.  He has excellent teachers who understand his needs.  He is not lost.  He would be lost in regular classroom, though I dream one day this will be possible.  My son has teachers that see him and value him.  That's more than enough.

We have a son that makes us laugh, cry, roll our eyes, and cheer.  Sometimes I lose my patience and remind him to "cool it, buddy" when he's asked to see Papa for the 10th time that minute.  I can discipline in haste.

But I love and appreciate my world and the wonder of life more that I ever would have before.

Sweetheart, it's gonna be more than alright.



Melvina Jordan said...

The two of you have made very good choices for Jeremiah and he can thrive and mature in his loving environment. As a former special education teacher, I believe that this is the absolute best choice for his education. I was an EMH and LD teacher in middle and high school, but I have only had a periphery glance at autism, but he has a wonderful teacher ( by your admission) who is thoroughly trained and experience to provide the best for him. Melvina C. Jordan

Jaybird said...

Thanks for taking the time to read and comment, Melvina! I think special ed. gets a bad reputation as it is hard to accept that your child does not fit the mold. We have had a very good experience. Of course I hope to have J exposed to the mainstream classroom and believe one day he will. But he is receiving excellent services where he is currently. :)

David and Kate said...

Well said pretty lady!! I will continue to pray for your family.


Jolene Philo said...

Your post is a good reminder that what we think will happen is usually much worse than what actually happens. We waste so much energy worrying and miss out on enjoying our children. Thank you for adding this post to DifferentDream.com's Tuesday special needs link up.

Jaybird said...

Thank you for reading, Jolene!