July 11, 2011
This blog has sat quietly for over a month now. Some people talk just to hear themselves talk. Some people write, just to write. However, I blog for a purpose. Today that reason is Teagan.
If you have followed my blog or are a member of Team Teagan, you know that Teagan was diagnosed with autism. A mild case, but autism nonetheless. I have been asked if I cried when I found out Teagan had autism. Actually, I did not. This diagnosis was a relief. It was proof that Danny and I are good parents and that we were up against a battle that we plan to win. The diagnosing specialist gave us renewing hope that his autism will be residual one day. Is there a chance we will struggle everyday with autism- YES! And we recognize that chance...but we hold on to hope that one day autism will fade and it will be just a story we talk about to Teagan's kids one day.
Residual Autism: individuals who had a history of having autistic disorder but presently do not meet the criteria for autistic disorder (i.e., still having some autistic features subsequent to effective interventions and/or natural development)
Months prior to Teagan's "official diagnosis"...Teagan was mistakenly diagnosed with Sensory Processing Disorder. Many children with autism do have SPD also, but this was the sole diagnosis given to Teagan. Of course, we researched and read and studied all we could about SPD. As a college professor, I have access to many many databases of scientific research material in which I could look up very in-depth articles on SPD. SPD was unique...but it was not uniquely Teagan. This disorder did not fit him. We heard "all kids are different" yet a group of kids with SPD did not look or act like Teagan.
SPD can exist without Autism and Autism without SPD, or they can overlap as co-morbid conditions.
Did I cry when I found out Teagan had SPD- yes! Why? Because after much research I realizes SPD was not my child. A diagnosis that does not fit- is scary. He is not classic SPD- the diagnosis did not fit. But expert after expert said "YEP- Teagan has SPD". Little did these experts realize that I was an expert in TEAGAN and I refused to let a misdiagnosis fail us. I knew deep down that autism was our Scarlett letter. I had numerous conversations with my own mom sitting on her couch watching the kids play games in her living room. "Mom, it's autism, I know it. Look how he does this and that...look how he does not do this or that?!" At times, prior to the official diagnosis, I felt like I was on fire yet everyone who passed said "that's not fire...it's hot, it's burning, but still not fire". Danny and I had numerous conversations late at night "It's autism, it's got to be" We filled out checklist after checklist trying to make sense of our 3rd child. With persistence, we finally got the truth- it is autism! Teagan has autism. But autism does not have Teagan.
From what I say and write, many people conclude that we think autism defines us...well hell it does- how could it not. Autism is what we live and breathe each day. It's like Cancer or Diabetes- you do not forget you have it...you spend each day living with it, dealing with it, embracing it. And we are ok with that. That is our normal. Each day we strive to make our children's life better. Every day we celebrate as a family when Teagan has a new accomplishment, when Tristan helps his brother with a new toy, when Taylor teaches Teagan a new word. Together as Team Teagan we define autism.
Why does my child have autism? Because without autism Teagan would not be Teagan...he would be Pete, or George, or Jack, but not Teagan. I think God picked Danny and I long before we were even born to have Teagan. He knew that we were a perfect fit for Teagan, he knew that Teagan was a perfect fit for us. And with this diagnosis comes purpose...my kids learn everyday that the world needs more understanding and compassionate people...more people who accept and do not judge...more people who are advocates...more people who speak up and out!
All parents have struggles. And with an autism diagnosis I do not see our struggles as greater than thou, but different. Autism is something we have embraced around the Guire household. This is our "normal"...autism is our normal. As a mother of 3, I thought potty training was a struggle...I though sleepless nights were a struggle. I soon found out that daily trips shopping, haircuts, going out to eat...those are our struggles. Melt downs are common with toddlers, melt downs with toddlers who have autism are our normal. Danny and I have learned to curb these melt downs. We do not leave home without a plan, blue dumdum suckers, and our iphone apps! Just the other day, we were trying to get through Lowes and Teagan picked up a orange cone and walked around the store with it on his head. It kept him happy, everyone who passed us smiled and giggled. Would I have let Tristan or Taylor do this when they were 2, probably for a second and then I would have made them put it back. Is Teagan being raised differently, of course. Tristan and Taylor are not being raised the same. Parenting is about adjusting your style to the child's needs...in Teagan's case he needs routine yet flexibility. Things in our life are very constant in order for Teagan to adapt to the world around him...however, when he decides to change it up- we let him and therefore he adapts to the world on his own. This is exactly our goal- for Teagan to learn to self adjust to the world without it always being adjusted for him.
I use to say "I planned to change the world, but I couldn't find a babysitter"...little did I know that with my kids I would change the world.
1 comment:
The problem isn't having Autism, it's how People choose to treat You.
Autism is like the story of "Pinnochio" there isn't a Blue Fairy in the Real World to make you Normal (a Real Person). that's the part you have to do Yourself.
It is You who makes you "Normal." (Real Person).
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