Well, if you know me well, you know I can't tell a story without all the details. So hunker down for a long one, folks.
On Tuesday, March 30th, Cody and I traveled to Iowa City with Cameron in tow. Owen stayed behind with Grandma Debbie, who came up during her Spring Break to help us. We went to the Center for Disabilities and Development where Cameron was evaluated by a Psychologist, Speech Therapist, and a Developmental Pediatrican. It was a long day as we were there from 9:45am til 4pm. We went in there expecting an Autism diagnosis, so we felt that we were pretty well prepared for whatever they might throw at us. We were wrong.
After examining Cameron and consulting with us for about 2 hours, the Psychologist told us that she had 2 diagnoses and neither of them were very good. The first one was what we expected: Autism. But the second one...well, we just weren't at all prepared to hear it: possible mental retardation. Now, before I go any further I must say that I hate that term. Therefore, from here on out you will hear me refer to it as many are now referring to it: Intellectual Disability, or ID. I was fully prepared to walk in there, get our autism diagnosis, be told what to do next, go out and do it, and recover my child from this monstrous disorder. When I heard those words, my heart sank. My hopes sank. I had been reading about so many success stories of children who had been diagnosed so early that they were able to intervene and recover them. Many show no signs of austism anymore, some are so high functioning on the spectrum that only they and their parents know they even have autism. This is what I hoped would be our case. This is what I'd prayed for in the last few months. And now two words seemed to make it all come crashing down.
After we heard her diagnosis, we were sent off to lunch and told to come back at 1pm to meet with doctors. We both walked out of there in a daze. You could have knocked us over with feathers. I cried as we pulled into the Hardees parking lot. We went through all the motions of getting in, getting our food, and sitting down, both of us still stunned at what we'd just been told. I couldn't talk about it very much due to the fact that Crying in the Middle of a Hardees was just not at the top of my Things I Must Experience Before I Die list. But there was one thing we were both able to say, "How does a child who could recognize and name every letter of the alphabet and count to ten before he was 2 qualify as ID?" It just didn't compute.
The second half of the day had us in more small rooms, waiting for more people to look at our child. I kept thinking, "What more are they going to tell us? What more could they have to say?" We saw the speech therapist, who confirmed what the psychologist said. Then he was weighed, had his blood pressure and temperature taken, his head measured, all while he screamed because he was tired of being there. I wanted to scream right along with him.
The last person we saw was the pediatrician. We gave her an entire run-down of Cameron's health history from birth to now, all while Cameron ran around the room in nothing but his shirt and diaper. By this point in the day, we could hardly see 2 feet in front of us, so it was difficult to absorb everything she was saying, as well as know what quesitons we should ask. We did, however, ask the question on both of our minds at lunch. The doctor explained to us that they are only seeing a snap-shot in time of Cameron. Their diagnosis only takes into account what Cameron did at that particular time on that particular day. They aren't looking at what he could do 6 months ago. She explained that his autism might be clouding his ability to do many things, therefore it may seem like he has ID, but in fact he doesn't. She also uttered the words that I have clung to since I walked out of that office, "Due to the fact that he was doing so many things as little as 4 months ago, I have very high hopes that with a year of intense therapy, he will get back everything he's lost." He will get back everything he's lost. I play these words over in my head at night when my thoughts take me to a future of unknowns, or during the day when I ask him to do something he once did with ease and now can no longer do, or when I see Owen trying so desperately to have some sort of meaningful interaction with his brother. I cling to them as if they were worth millions of dollars. I want so badly for him to be able to tell me again what sound a cat makes. I'm mad at myself for not getting it on video when he was doing it because I'm afraid I might never hear it again. I'm mad that these are now the things I'm wishing for.
But don't get me wrong. While Tuesday was one of the hardest days of my life, as were the few days that followed it, I don't spend my entire day wallowing in self-pity. (I usually reserve just a small portion of the day for that.) I told myself on the 2nd day of feeling sorry for myself and for Cameron and the cards we've been dealt, that I can't concentrate on possibly having to take care of my adult son in 30 years. I have to concentrate on taking care of my 2-year-old son now. I have to remember the high hopes the doctor had for him and I have to keep my hopes up, too. And if I can do that, I can make it through a day and things are ok.
So that's where we are right now. I'm just trying to get through every day, just like any other Mom. The last few days have been spent enjoying my kids, making lots of phone calls to figure out where we go from here, and trying to work in a little therapy with Cam. I keep telling myself that he's still the exact same kid he was last week before we ever heard any of these words that were so difficult to hear. He still smiles at me. He still laughs, still gives me kisses, still runs to his Daddy when Daddy puts his arms out for him. He's still our Cameron. And he's pretty freakin' great.
Before I close, I'd just like to say thank you. I've received countless phone messages, text messages, emails, and cards. Messages telling me you're thinking of me, what a great Mother you think I am, what a great kid you think Cameron is, that you're praying for all of us, or even some who want to take our children and give us an evening out. ALL of them are appreciated more than I could ever express. Though I'm trying my best, they are coming in faster than I can respond to all of them! So if you've called or written and haven't heard back from me, I promise I will get back to you soon!
There really is so much more I could say but I'll save it all for another day. For now, I'll just say stay tuned. I know Cameron is going to amaze us all!
4 comments:
Love you all!!! Will always be my Jeep
You are amazing and deserve time to let this all settle in before you have to face all of us. You are in our prayers and I will be calling soon once you have alittle time
Wow! A lot to absorb is right! But there was one statement you made that stuck to me....
"I keep telling myself that he's still the exact same kid he was last week before we ever heard any of these words that were so difficult to hear."
That's exactly right. Before Emily was diagnosed with ADHD, Body Focused Repetitive Disorder and Obsessive/Compulsive Disorder - I just dealt with the cards that were given me and didn't think about anything medical. Once the doctors put all these fancy titles on her "issues" - it was hard to stay focused on the little girl who was happy, bubbly, full of life - yet just had some things that set her back a bit - although we all do! I remember looking at my doctor (in one of my weakest moments) crying and saying, "I want her to be normal!" He gave me the weirdest look and said, "Heidi, define normal" WOW - he was right - what is normal? Emily is normal - she is normal in her own way!
Every child with special needs takes a lot of energy time and patience out of a parent. It doesn't matter how serious their condition is - for each one puts up a challenge. But Sarah - God only gives us what we can handle. Luke and I believe that God chose us to be Emily's parents because he knew we could handle it. He knew that we would go the extra mile to research, care for and love her the way she needed it. You and Cody are special too! You have been given a challenge and you will rise to the occasion and do just fine. Remember always your statement - He's still the sweet little Cameron that he was last week! Enjoy every minute. I told someone last week that through all Emily's struggles and all the times where I have gone to work crying feeling like a terrible mom because I can not "fix" these problems she has - She has taught me a lot. Soemtimes I think God sent her to me to teach me PATIENCE! I never had any - still am pretty short on it - but am getting some. It won't be easy - there are times u will want to scream, cry and hide.....but know that you are not alone and there are SO many parents out there that can be of support to you (even if their kid's diagnosis is not the same). :-) We all love you and are here for you!! You can do this - Cody can do this and so can Cameron!!!!!
Well, I'm in complete tears reading your post. You have a way of saying things that really put me in your shoes. Heidi's post sent me in more tears. You both are amazing people and amazing moms. I only wish and hope to be that compassionate and understanding of all people around me.
Thank you for sharing, Sarah, and know that we too are thinking of you. Having those feel sorry-for-me days will make the other days feel that much better. {{{hugs to you all}}}
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