Friday, March 13, 2009

Sometimes all the accomplishments get lost in the daily challenges

And you forget about the good until something happens to remind you. Jaymes and I have accomplished so much in the last year or so... Thinking back to November of 2007, when we moved from Florida to Nort Carolina, it's amazing, really.

Where we were: Living in a crappy house in an old fart's neighborhood on a golf course where they measured my lawn. I had recently lost my Parent Advocate job (that summer, so maybe not so recent) and was incredibly depressed. Was working very much part time babysitting my friend Julie's kids, which was a lot of fun. Jason lost his job not long after me, because of me probably... Then was at Walmart making $8 an hour. We were drowning in debt, still in the middle of a bankruptcy. I had gained a ton of weight and was at 160 lbs and hated it.

Jaymes was in a wonderful school, but that's about it. He had gone through 4 speech therapists. One told me he'd never speak, and was generally a nasty witch, so we told her we needed to "take a break." Another taught him to pound on doors, which to this day means no one sleeps in late EVER. Another gave up on him a few weeks in, because he wasn't progressing. He had an incredible OT (Kaycee Macy) who worked with him for almost 2 years, then just -poof- disappeared, never heard from her again, which was seriously a shame because she was incredible and she really brought Jaymes quite far. When he began with her he screams the entire session, couldn't hold 2 blocks at once, couldn't stack or do a puzzle... nothing. By the next year, he very much respected her. We had just set up SSI for Jaymes, and had a wonderful pediatrician who I miss horribly because he truly was one of those greats. if you're in SW Florida, I very highly recommend Dr. Benjamin Helgemo of Helgemo Pediatrics. He's an autism friendly doc who actually listens, and really tries his best to figure things out.

Jaymes health was crap. He had fevers nearly every day. The school nurse sent him home to me at least 3 times a week with unexplained fever and diarhhea. He had the perpetual sinus infection, ear infections, was never healthy. He never really grew, and always looked so sickly. He had no words at all, had horrific tantrums, and we were all miserable.

Sierra was just learning to walk, and she was such a joy. She still is, although her new obsession is trying to lick my arm with her slimy, slimy little tongue while singing "Tongue-Tongue!"

And now we're here,. we've come so far:

We're out of debt (my hospital bills not counted, I'm paying on those slowly). No credit card debt, and my credit is getting better. We finished off our Ch.13 bankruptcy fully, and THAT is an accomplishment. We made allll those 3 years of payments, never missed one. I'm very proud of us. Jason's got a much better paying job, and I've got my little bit of extra income from Adsense and Blogher Ads. We can afford my horse, and we live in a beautiful little house in a wonderful town. My neighbors are jerks, but I don't care, I love where we live and I love having room for a horse and my gardens and everything.

Jaymes is in a school that is nowhere near the quality of his old one in FL, but he has a teacher who seems to be very fond of him (though definitely not of me) and who genuinely cares about him. He's in Speech, Occupational, and Physical therapies outside of school with the three best therapists I could ever ask for. He has made leaps and bounds speech-wise, and watching his therapist "S" working with him is really just incredible. I love watching him sit in that little room with her and succeed at things. Same goes for OT, therapist "R" is absolutely wonderful. She's gotten him eating all kinds of foods, and she's given me so many great tips. His PT is also awesome, she's got him to where he can kick a ball (if he wants to) and ride a tricycle. Very cool stuff.

We have the BEST case manager, Julie, who has helped me get Jaymes his therapy swing, helped us with our Xmas situation, found Jaymes an autism friendly dentist, and is working on an application for a special play/therapy area for Jaymes. She's been such an incredible help and support, and it's hard to imagine what I did without her!

We've got a GREAT new pediatrician, Dr. Albright, and an excellent psychologist/developmental pediatrician, Dr. Klinepeter. They both work so well with the other people dealing with Jaymes, and everyone has managed to communicate enough to make things work out smoothly. We're still trying to get Jaymes' meds settled, but all in all he's doing pretty well.

We've even got a really nice grad student (rec. therapy student) working with Jaymes, and he loves her already.

All in all, we've got a really remarkable team of professionals working with Jaymes and helping him reach his potential. He has come SO far, you wouldn't know him if you'd met him before we moved.

No more fevers, no more sinus infections. jaymes is getting big, and looking great. He still has crappy ears, and he's got bad skin issues, but in general his health has improved drastically since the move. He has a big back yard he can play in, kids in the neighborhood... A really cool childrens museum in Greensboro, and that Bumper Jumpers place too.

We've gotten SSI set up fully, get diapers through insurance, gotten respite set up (though that's been one big messy headache, to be honest), gotten Jaymes on the CAP waiting list, got a speech device ordered for him... We're working on the handicap parking permit so there will be no danger of Jaymes running in front of cars walking alllll the way from the back of a parking lot. We're working on the play area. We got a scholarship to attend the Autism Society of NC's annual conference later this month.

I finally made my website dream a reality, and this blog has just taken off. Thank you, all you anonymous lurkers and the ones who comment too, I am so honored to have so many of you reading what I have to say.

I've finally gotten set up to go back to school. I was awarded $1700 in Pell grants, and will be starting this summer on my path to becoming a Special Education teacher. Scary thought, isn't it. Hide your children.

I let myself get down about little things. In the midst of a bad day with Jaymes tantruming and Sierra whining and Jason nagging at me, I forget the tremendous amount of progress we have made. Progress I have made, Jaymes has made.

We're awesome, and it feels so good to remember that sometimes. Jaymes is the best kid there is, and challenges or no challenges, I am beyond blessed to have been gifted with that smiling, giggle, squirmy little goofball.

Edited to add this photo I found on Myspace... One of my very dearest friends from Florida, holding an hours old baby Jaymes. AWWWWWW.


Maddy said...

Wow! Well that's in complete contrast to my moan today.

Having said that the people, the professionals that we've met along the way have made all the difference and similarly, my boys have both made far more progress than I ever dreamed possible all those years ago.

Sometimes it's not even a question of being a 'bad' therapist is more that there is no chemistry. Once you have the essential element it's quite amazing what they can achieve.

A new career path! Well done you, you're much braver than me.
Best wishes

Amber DBTD said...

Hey now, I'll never begrudge anyone their moany post. Most of mine are moany anyway. It's rare I feel all positive. I must be getting sick of something. Hmm.

Anyway, thank you for the nice comment!

Halo said...

Sometimes it is easy to forget the progress we and our children have made when our lives are sooo busy.

Just look at that beautiful baby, his dark hair is lovely. He has little red eye lids just like my Twinkle when she was a tiny baby. :)