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Not So Much A Diagnosis As An Explanation…

If you are new to this blog, or if you are confused because I have never spelled this out in black and white, my son, Edward, who is eight, does fall on the autism spectrum, specifically with a diagnosis of Asperger’s.

(Like many of you dealing with a new diagnosis, I write this with mixed feelings of both relief and trepidation.  This is a label that I am just now beginning to absorb.  After so many “possibles” and “closely resembles” from a host of doctors, the need for services at his new school necessitated this label, and I am OK with that.)

<<Breath>>

As with any child, Edward’s behavior vacillates wildly, so there are situations where he is completely like his peers and there are other situations where his differences stand out more.  Soccer is an area where he gels fairly well, so I struggled with telling his coaches about his diagnosis.

I am new to this town and I don’t know what to expect.  Will they still let him play on a “typical” team?  Would they treat him differently?  Do I want him to be treated differently because he has made it perfectly clear that he does not want to be treated differently.

After much agonizing and reading various professional and parental opinions about how to handle just this type of situation,  I decided to simply share that he has issues with focus, attention and self control, and might need more patience than some of the other players.

So I’m standing there yesterday at the first practice, my heart sort of racing, waiting to see how he will or will not fit in with this new group, and I see a mother rush over to her sobbing player.  Initially, I think nothing of it–they are seven and eight-year-olds–they still sob from time to time, neurotypical or not.

(Deep inside, I am somewhat glad another child is getting upset because that will make it less of a spectacle if Edward gets upset.  I know that might be a strange way to think, but I’m just being honest.)

The little boy keeps crying, although it’s clear that he’s not hurt, and some of the other mothers (whom I have just met) begin to murmur among themselves about the reasons he might be so distressed.  Then the coach’s wife steps forward and gently explains that this little boy is autistic.  He is actually a twin, and his brother is on the team, but is not autistic.  Everyone nods in understanding and returns to their conversations about crock pot recipes.

My initial feeling is one of odd relief, and I say a silent prayer of thanksgiving.  God knew what he was doing putting my child on this particular team.

This was a hard post to write in many ways, but as I sit here at 3 am, I am slowly, but surely, beginning to feel a bit more free.

I am tired of skirting the issue like it is something to be feared or ignored or talked around.

So many of you have given me the courage to press on with this by writing about your own children.

Thank you.

I am ready to talk.

Posted on 5 March '10 by , under Autism Spectrum/Sensory Processing, Social Skills.

16 Comments to “Not So Much A Diagnosis As An Explanation…”

#1 Posted by Elle (05.03.10 at 09:02 )

I can tell from your post that this has been a real struggle for you guys. It sounds like you’ve found a nice town for you and your family.
.-= Elle´s last blog ..You Don’t Look Odd =-.

#2 Posted by kim (05.03.10 at 10:11 )

God is amazing!!
What a blessing
And I want you to know I am proud of you
You are a GREAT mom!!
Love you much!
.-= kim´s last blog ..Before and After =-.

#3 Posted by Casdok (05.03.10 at 12:13 )

Lovely to hear the other mothers reacted well, so i can understand your relief.
.-= Casdok´s last blog ..C Spoke!! =-.

#4 Posted by Darcy (05.03.10 at 12:24 )

And we are definitely ready to listen.

Beautiful post.

#5 Posted by Stimey (05.03.10 at 12:40 )

Wonderful that you found that team. I also struggle with when to tell people about Jack’s autism. Some times it’s completely appropriate and sometimes it’s either extraneous information or information that will set him aside as an untouchable.

I’m glad you’re writing. I imagine that there are lots of people who read your words and they may not comment on them, but they hear them and it either gives them comfort about their own child or educates them about someone else’s.
.-= Stimey´s last blog ..I’m All Over the Internet, But a Mention in an Honest-to-God Print Newspaper Gives Me Chills =-.

#6 Posted by Patty (05.03.10 at 16:20 )

And we are here to listen. This post just brought tears to my eyes. I think I know what you are dealing with, to a certain extent. I have had many situations where I debated whether I should tell someone about Danny’s diagnosis or not. It is so hard to tell. I told the dentist, but not the eye doctor. Danny’s dental appointment went pretty well, whereas the eye doc appt was horrible, and not actually because of Danny (well, aside from his inability to sit still).

Anyway, I have so many mixed feelings about this diagnosis, and many of them are really, really hard to talk about, like my sometime embarrassment over D’s behavior and the rage I feel when someone pities me. Oh, and theres also the envy of other families with neurotypical kids.

I am so glad that God sent you to a team that will understand Edward.
.-= Patty´s last blog ..lessons I have learned this week =-.

#7 Posted by Elizabeth (05.03.10 at 16:39 )

Thank you–all of you–and as I sit hear reading so many supportive comments I realize that God sent me a team through blogging too : )

#8 Posted by JoyMama (05.03.10 at 19:43 )

Let the conversation commence/continue! :-)

That soccer team sounds like an astonishing blessing.

I am looking forward to hearing much more…
.-= JoyMama´s last blog ..Hope, Without a Prescription =-.

#9 Posted by Heather (05.03.10 at 22:48 )

I’m sure that was a very hard post for you to write and you are very brave for doing so. My twin daughters were born at 29 weeks and are currently 7 months old. We are going through pediatric neurologists visits now with one of our daughters and it’s a very hard pill to swallow. Right now everything is ok, but they are wanting to do MRI’s and EEG’s on both girls to rule out anything with them being born premature. I fear what could come of it all but at the same time know that I love my daughters with all my heart and still will no matter what. But like you said, I think it’s more the fear of what others will think or say. This world can be a cruel place at times. Best of luck with your son’s new soccer team and just continue to trust in God!

Oh…and I’ve also joined the 1000 comment challenge! Best of luck with that also!
.-= Heather´s last blog ..Show us your life: What is your typical day like? =-.

#10 Posted by Laura (06.03.10 at 01:29 )

I’m studying to be a special education teacher. There are so many laws that protect the rights of children (and adults) with disabilities. The schools are obligated to provide these children with the same opportunities as other students. Plus, if you treat your son like he’s a regular kid, so will others. They’ll look to you on how to treat him. (There are high functioning children with autism & it sounds like your son will do just fine.)
.-= Laura´s last blog ..HUMAN TRAFFICKING IN AMERICA! =-.

#11 Posted by Tari (06.03.10 at 22:01 )

Proud of you!!!

It’s a word – like diabetes. I have my own “official diagnosis” to live with, and that’s how I think of it, most of the time.

Be not afraid!
.-= Tari´s last blog ..The Pathetic Re-post Option =-.

#12 Posted by Danette (07.03.10 at 06:19 )

What a blessing to find that team, and it sounds like the other parents are very understanding too which really helps.

I kwym about the struggle of whether to tell people or not, not that it’s a big secret or anything, but still. With Bitty it’s easier, because well, most of the time it’s more obvious. But with his brothers I still have that debate whenever they are going to be in a new situation, because sometimes they do just fine and other times they really do need some extra patience and understanding. It’s one of those case-by-case things (at least for me) although over time I’ve tended more toward giving people a heads up just in case. There’s no right or wrong, really depends on the people involved and what you’re comfortable with too.

I’m glad to hear things are going well, and I look forward to hearing more of your thoughts.
.-= Danette´s last blog ..SOOC Saturday: Palkia – 1, Snowball – 0 =-.

#13 Posted by Harriet (07.03.10 at 11:45 )

I’m stopping by to thank you for taking on the Comment Challenge.
Good luck and thanks!
Harriet

.-= Harriet´s last blog ..How to Make Money Blogging? I’m game….and stealing… =-.

#14 Posted by mrsbear (07.03.10 at 22:17 )

I’m so glad that you’re starting to feel less alone! What better place to open up than your little corner here, where you’ll find always find support.
.-= mrsbear´s last blog ..Because Strangulation Isn’t an Option =-.

#15 Posted by the domestic fringe (09.03.10 at 11:51 )

It sounds like the Lord has put you and your family in just the right place for such a time as this. You have a great child who is lucky to have an amazing mom like you. Thank you for your courage in sharing your heart!
-FringeGirl
.-= the domestic fringe´s last blog ..Doctoring Without A License =-.

#16 Posted by elaine @ peace for the journey (15.03.10 at 20:34 )

I’m glad you wrote about this. My son is ADHD/Dyslexic and his learning struggles are apparent, real, and draining most days. Today I was called for a conference regarding my daughter who is, apparently, having trouble with “re-telling.” Re-telling? Are you kidding me? After what I’ve been dealing with in her brother, I assure the teacher that she’s fine; that we’ll work on it. I know we’re not exactly in the same boat with our “issues”, but I do harbor a great understanding for kids that are struggling with their “fit” in this world, adults as well.

This world can be a cruel “walk” some days.

You’re doing a great job, mom.

peace & prayers~elaine
.-= elaine @ peace for the journey´s last blog ..remembering the story… =-.








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