Tuesday, April 2, 2013

Blue for Autism Awareness Day......is April 2



I appreciate each and everyone of you who has through the last four years (almost) encouraged, supported and rah rahed us, at Casa de Cuckoo as we have shared our 3 generation household with you. You've been ever so loving and understanding of my grands and their struggles and successes (and my worries and my boastings). Thanks so very much.

Today has been chosen as the day when the puzzle pieces of autism are viewed not as broken but as precious. Each piece holding a special someone that is loved but needs more understanding and insight into who they are and how they will contribute. Hopefully someday we will put all the pieces together of this puzzle called autism and find what makes our non neural typical children that way. Not broken and needing fixing but differently abled and deserving respect.


For the past few weeks, our precious 8 year old dynamo of complexity RyLeigh, has been going to see a new set of specialists. This was after his med management team seemed to have lost their way in the real world as "there to help him". Shelley sought out new avenues of help.

You know diagnosis for autism is a two edged sword. One the one hand, in order to get the specialized help the child needs you must have a diagnosis. One the other hand diagnosis means a label, for life. And there is, at best, subjectivity involved in the testing and they will always tell you that the tests are not absolute. Which makes me beg the question, but if you are the experts and prescribe the drugs, how can you do so based on an educated guess? Don't you need proof positive before you "do no harm"? Just asking.

But then you know how I feel about doctors.

So the new team of autism specialists did medical tests, blood, urine, reflexes etc. They also did IQ testing and the ADOS tests, which if I told you what they were I would be lying....I have no clue ?????? RyLeigh is who he is. He carefully observed everything about what he had to do for these new people in his life. He was okay with everything except the blood test. He was friendly, polite and sweet according to all who administered any part of the testing. He's a good kid. He's engaging with adults but cannot do so with his peers. He has now reached a road block at school with being teased and excluded based on his being "different". It's hard to watch and so he's bright, happy on the outside and a boiling mass of childhood on the inside.


He has a new diagnosis, which is actually an old diagnosis, PDD NOS. Pervasive developmental delay not otherwise specified. With that said he scored normal on the IQ and is very definitely on the spectrum. And we also found out that "they", the powers that be, are doing away with any verbiage pigeon holing children. Henceforth they will only say that the child is on the spectrum.

Now my reason for writing this post today is because I feel like I owe it to RyLeigh to be his cheerleader and encourager. I also have written this because RyLeigh lets me see other people in a whole different light. So he has been my teacher and eye opener. Our family would not be who we are, know what we know, have the feelings we do about others were it not for our special beautiful boy. He drives me to the nut house everyday, he also fuels my life with joy.

So on this twoth of April, I wanted to share with you, some of the ins and outs of RyLeigh, the resident inside, outside, upside down philosopher of Casa de Cuckoo who still needs special kind folks to cheer him on and he knows that you are in his corner when he says, "hey Oma, are you gonna tell the lovelies about this one of me?"

And so I will. Easter Sunday we went to visit our friends at Morning Bray Farm. While there, RyLeigh, who just adores Don, says to Don, can I show you something? Sure Ry, what is it? Ry says, I wanna give you a peep show. Both Don and Justina looked at Shelley and I with a "what the", look on their faces. We assured them it was okay.
Inside, Ry asks for a paper plate, opens a package of blue peeps, puts one on the plate and asks Don to zap it for 30 seconds. And watch the peep show.
The peep grows ever bigger and Ry is smiling and Don is looking like he's not sure about this thing that might explode in his microwave.
Then they take the now deflating peep out of the microwave. Don't you think that's cool? asked Ry of Don. Uhhhhh, yeah. And off RyLeigh walks to play with the dogs.
Shelley and I were laughing so hard. Uhhhhhh yeah.
Then Shelley told the story of how the blowing up of peeps came into our lives. On the night that she was in labor with Ry, the nurses on the ward were in the break room laughing hysterically. I looked in and one of them said to me, pssssst, ya wanna see a peep show???????
So we blow up peeps every year on or around Ry's birthday as a funny little moment in time that brought to us on the night we got our funny, sweet RyLeigh.

Got any left over peeps from Easter?......put um in the microwave and think of the Cuckoos.

Smooches and Squoozes, Oma Linda

11 comments:

  1. <3 that sweet little boy.

    I am hesitant to speak of Autism and the Spectrum and all that because, while I am married to and gave birth to 2 borderline Aspies (my diagnosis), I don't feel experienced enough to opine without possibly offending someone who lives with it daily.

    Bottom line, you all love, and that matters more than anything in the world.

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  2. RyLeigh's "peep show" made me laugh! Who doesn't love peeps?

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  3. God bless and keep you for this wonderful young man! You are on his side...and he is growing beautifully! I wish you Peace, Mary Helen Fernandez Stewart

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  4. My son too was diagnosed with that exact same label. After awhile I said, enough with the tests, enough with the labels - he is what he is! He graduated from high school and has been in the Navy for nearly 5 years now.

    Your little guy will be A-ok. Just focus on the areas he needs improvement.

    Cheers, Tami

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  5. I'm hoping I'm not too late to get some peeps at 70% off, I want to see a peep show. LOL! Ry has one of those smiles that makes you want to smile back. You've gotta love that boy!!! S&S

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  6. I'm almost glad we can't get Peeps here, as I haven't a microwave, so I'd miss out on the fun (I suspect my gran wouldn't let me play with hers ;o) )

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  7. "Not broken and needing fixing but differently abled and deserving respect." I love that.
    The peep show was priceless and I am now going to look for that last peep I am pretty sure survived. Can't wait to try it.

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  8. This is a great post Oma Linda! My heart is smiling! You can tell Ry, it's because of him! I am still laughing about the peep show! LOL! When I look at Ry, I see such a gentle and kind soul, who loves life! I hate that he is being teased at school! Why do kids have to do this?? Why do adults have to do this?? Tell Ry I love him ;o)

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  9. Well, you tell precious little Ry that I'm right there with you cheering for him in his forever squad ;-)

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  10. I was pretty much ignored in school which I thought was a terrible thing. Being teased and bullied would be horrible. Thank goodness Ry has you all as an incredible support system. Who couldn't love that sweet, smiling and openly loving face?

    Hugs to all the Cuckoos.

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  11. Mr. RyLeigh has done nothing but open my eyes to further understanding of humanity, been the source of many of my healing smiles, and above all, stole my heart. You cannot know how thankful I am that you tell us lovelies things on him. ;-)

    Go sweet Ry and go team Casa de Cuckoo! You are forever my heros. Many hugs, Mina

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