Li’l Red

10 08 2009

red2

I was having a rough day, so Stan took the kids to a friend’s house and told me, “Do something for yourself.”

Despite my lack of posts the past while, I truly do enjoy blogging. I have big plans for vacation updates and book reviews . . . but today I decided I would tell you about my Colby.

He’s 31 months old and doesn’t say any words at all. He babbles some (more frequently now), and occasionally gets out a “Da!” or “Mum-mum-mum”, but most often we rely on a tug-Mom’s-hand-until-we’re-in-the-general-area approach. Luckily I’m a pretty good guesser.

We suspected autism early on, but there were lots of things to try first: hearing tests, walking (some kids start talking once they aren’t focused so intently on walking), triadic eye gaze, etc. About last November, I got to the point where I realized this child, the son who has my name along with a gigantic portion of my heart, had a disability.

I grieved.

There were so many expectations I had to let go of, and I hadn’t even realized they were there: graduation from high school, college, mission, marriage, grandkids.

It hurt.

I hurt for him when I thought of so many experiences I’ve had and enjoyed that he might not have. And I hurt for me, wondering if he’d ever speak to me and be able to tell me he loved me.

It took some time, but I realized that Colby is the way he is for a reason: for him, yes, but probably more so for our family. We need him. He might go on to do all those things and more, but he might not. We will love him (love him, love him!) no matter what.

At the beginning of July (talk about waiting lists–autism evaluation is CRAZY), Colby was evaluated and given the diagnosis of Autism Spectrum Disorder. Even though I was expecting it, I was still surprised at the blow it gave me. There was still a tiny little flame of hope in my heart, one I didn’t even know about, that was holding out for, “Guess what–he doesn’t have enough vitamin A. Give him these drops and he should be talking in no time!”

However, the shock was brief. I had already grieved the child I thought I had, and was embracing the one I was blessed with.

He truly is a blessing.

If you could hear his laughter, you would know why.

 

Colby is joy personified.

 

And the world needs more of that.

I am beginning the daunting task of coordinating various therapy efforts. I’m not good at things like this, appointments and whatnot. It’s scary to me. I also don’t understand the school system at all for special needs kids, and what I need to do to ensure he gets all the services he should. I need to be his advocate, but I’m not good at advocating. I’m good at accommodating, but that’s not the same thing. I’ve been praying for a backbone, for the courage to be the squeaky wheel. Because you know what they say about squeaky wheels . . .

They’re the ones that get the grease.

 

(squeak, squeak)

 

And who deserves grease more than this munchkin?

nap

(This picture makes me want to hug him until his eyeballs pop out.)

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14 responses

10 08 2009
Berta

He IS adorable and I’m with you on the ‘squeezing the eyeballs out’ thing! ! ! Well, you adorable ‘mama’ – if there’s anyone who can take care of this, it’s YOU! You are and always have amazed me – since you were a little girl – so grown-up, so capable, so mature. Yep, that’s YOU and I KNOW you can handle this most precious little guy with tenacity. You are SO capable – Heavenly Father laid this adorable bundle in the right arms! You’ve got what it takes now, go out there and FIGHT!
Luv ya –

11 08 2009
melissa

Thank you for your perspective and for sharing. I think a lot of unhappiness comes from life falling short of our unrealistic expectations (that we can’t help but having). Good luck reframing, that is so difficult.
Bless you and your family.

11 08 2009
Candice

I love you for writing this. I cried, and I felt hope, and a ton of love for all of you. Let us know how Heavenly Father turns you into a squeeky wheel for your son. I related to the “accommodation” syndrome, which is a blessing and sometimes not.

By the way, on a completely unrelated topic, I gave a lesson in church to the Young Women. It was called, “The Wisdom of Group Dating”. Anyway, one example I used was a date that I had with Stan a million years ago. It had something to do with a blindfolded fingerpainting contest using the medium of chocolate pudding.

You are both awesome.

11 08 2009
mandy

Again (and again, and again) you amaze me. You are unbelievably strong and I KNOW that you will be completely capable of doing everything that Colby needs and more.

P.S. Me? Totally an accommodater–must be something in that Rexburg water.

11 08 2009
Ina

Truly adorable child!! And you’ll be an awesome squeeker!! 🙂 We’ll keep you in our prayers…

11 08 2009
Christina

Hey Wendy,
He sure sounds like your family’s angel! What a precious little guy! The fact that you have started looking into help for him before he starts school is HUGE!!! You’re a good mom, just have faith in yourself! I have a few friends in your situation, both here in Bonney Lk. & in california….. if you need someone to talk to that’s been through it, let me know & I can put you in contact with them!

11 08 2009
Mrs. Olsen

As for the advocating department, just curious if happen to have an opinion about vaccines, mercury, and autism….?

p.s. I eagerly await to hear more of your exciting and JOYful journey with your little redhead.

11 08 2009
Becky

Wendy–we really love you guys. Anything you need, anytime

11 08 2009
moniquel319

I think the school thing will become more clear as he starts going to classes. I worked in SpEd, although different crowd, before quitting to stay home with my kids. They try to include him as much as possible in the regular classes and support him as much as he needs. Sometimes that involves putting him in special classes or having an aid help him through regular classes. Or a myriad of other options (which will seem overwhelming) you can discuss all of them with the team of people that will be assigned to your son. You will attend IEP meetings on regular occasions where they discuss progress and make recommendations. Don’t forget you, as his mom, know best! Your voice is the strongest one! If this isn’t enough info for you, you can email and ask for even more but I don’t want to overwhelm you. Besides, you have a while before you need to worry about it. Good for you for checking into it early though. It’s good to get to know those that will be working with you and him. If you have the time or inclination, you can volunteer in the SpEd department and see for yourself on a daily basis what they do there and what you can expect. Good luck to you and your family and we’ll keep you in our prayers.

12 08 2009
Dina

I can relate to all of your beautiful words. The advice above was good. YOU, as his mom, will know what he needs. I have been really blessed to be in 504 meetings for Mikayla with school personnel that have accommodated everything she needed. IEP is different, but you will be his best advocate. You will figure it all out.

I’m glad you had some time to yourself. You, of anyone I know, deserve that solitude.

Love ya and call me when you get a sec.
Dina on vacation 🙂

12 08 2009
Alias

Isn’t that mother-instinct thing crazy? In a good way, of course. I don’t want to be insensitive, because I know your grief has been all to real and the challenges ahead look daunting, but can I share a related, happy story?
(Okay, obviously I can — and, you guessed it, I will!)

I know it might not be all that helpful, since Lil Red is anything but my sister-in-law-with-4-little-kids…. but they do have a few things in common. She also didn’t talk until after 3 and exhibited signs of autism early on. (Did they call it autism back then? Prob’ly not. Anyway…)
My MIL naturally took her to all sorts of doc’s for testing, speech therapy, etc, went a little crazy trying to figure out what was wrong, and then one day that little girl put her hand on her hip and said, “What’s the big deal?! I don’t have anything to say to you!”

Normal? Definitely not. Funny? Sure, it is now. Wasn’t so much then. Sister-in-law ended up getting through school just fine managing her learning differences, went on a French-speaking mission, graduated from college, teaching school, and is currently raising a happy, wonderful family. Autism is a wild card. You never know how a kid will grow up through it!

Heavenly Father sent you an amazing little person to care for, and I’m so grateful that you share both him and your faith with us through your blog. You inspire me! I love you and your beautiful little energetic crew! You’ll be in our thoughts & prayers. 🙂

13 08 2009
Wendy

Thank you all for your encouragement, advice, and kind words. I’ve been thinking about what you said about disappointment and expectations for days, Melissa.

I had my first meeting post-diagnosis with the early intervention folks yesterday and was very encouraged. They were sympathetic and I could tell they really were interested in getting us what Colby needs. They also indicated they are willing to teach us as parents some different techniques for increasing the communication capabilities of Colby.

Monique, I appreciate your extra insight. I have a pretty good feel for “regular” school, but admit to being completely mystified by the special needs end of it. I have contact numbers for my district and they already came to see me before school ended in June, so I’m hoping to do a little more networking to see what I need to do to insure Colby’s in the right classes come January.

Mrs. Olsen–from all I’ve read, there is no clear, scientifically substantiated link between vaccines and autism. I think autism has to do with the “wiring” in the brain. So there’s that physical component, as well as a genetic component, and then I think there are various environmental triggers–I think it’s a big equation that adds up to autism. I personally don’t think Colby’s autism is related at all to his vaccinations, although I know many mothers who swear that is the case. I feel that the time many features of autism show up is around 18 months, especially as doctors are more educated as to indicators and milestones. Since this is also the age kids get several shots, it could be a factor, or it could be coincidence. I’d still get Colby vaccinated if I were doing it again.

I also don’t believe autism is a disease. One group that has sent me a bunch of stuff in the mail talks about “curing” autism. I don’t think it’s a matter of curing or not curing–it’s a condition, not a disease. Treatments like therapy and diet are all geared toward increasing functionality. A book I read likened it to building highways: some places in the brain are flat and smooth, easy to build on. Other places need some blasting or tunnels or just a different route to get from A to B. Still others are simply impossible to build roads on. The terrain won’t allow it. With any child, the raising is geared toward becoming functional adults in the world around them. Autism certainly has its challenges, but we’re working toward getting as much functionality as possible, just as with our other kids.

(Stepping off of soap box.)

16 08 2009
Tami

I’m happy he was sent to you! You’re the right family for him and all of the things you will learn to stretch and do will turn into great wisdome you will pass on to others some day!

16 08 2009
Tami

Except I can’t spell wisdom, thus I will never be a school teacher.

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