Just Thankful...

Tonight I read a posting on the Autism Speaks blog called "Be Still"
http://blog.autismspeaks.org/2010/07/29/itow-graves/ and it really touched my heart. In so many ways I relate to what the mother of this posting is going through but it also made me really thankful for what we have and how far we've come in the last 4 months with therapy.

Before JD was diagnosed his normal days mostly included stimming with his trains on a small end table, watching tv and having very large tantrums during meals, getting dressed, changing his diapers, playing with his sister. He really never approached me very often, would only respond to his name about 50% of the time and never said anything other than choo-choo and chugga chugga.

Fast forward from March into mid-July... JD is a different child. It's not that we don't have difficult moments with him (geez, three days ago he just cracked our flat screen tv by hurling his sippy cup at it), but in so many ways he's changed.

JD now has over 60 (probably more!) words. He is pointing, gesturing, dancing, imitating, laughing, singing, smiling, interacting, listening, communicating... it brings tears to my eyes just thinking about it. Today him and I had the best time dancing around the family room to the song "I've gotta feeling" by the Black Eyed Peas. We spend hours hiding in our "fort" aka the walk in closet and every night before bed we give kisses to pictures of everyone in our family.

Things that I never appreciated with Ashley are now huge accomplishments with JD. Today in OT he learned how to crawl up a slide... something Ashley could do right after she started walking. JD was terrified and it has taken him over two months to finally get the courage up to do it. But today he did and he was ecstatic! The pride I see in him when he says, "I did it!" in his hardly understandable language. My heart explodes with happiness.

I guess that's why I'm thankful. I feel like the past few months have taught me to enjoy every minute and every accomplishment. To not take things for granted that I did before. To really appreciate the people that have helped him and us - our family, friends, his therapists, teachers, the other parents with children who have autism. Because this is something we couldn't have done alone.

This month JD gave me a kiss for the first time... a totally unforced kiss on the lips. I think that moment changed my life and now every time he does it I remember how far we've come. :)

June Accomplishments!

WOW - here we are, already finished with the month of June! I can't believe how fast the weeks are flying by! Well it's been a GREAT month, probably one of the best of my life. JD is doing wonderful and has been really progressing in therapy. This is his 4th week in his new preschool, PowerMeKids, and his 5th week in speech and OT. It's almost like having a new child. OT has really made a huge difference in his life. He seems happier, less frustrated, more social, and more talkative. It's not like sentences are just flowing out yet or anything, but he's learning new words everyday.

The best part of the entire month is that for the first time JD kissed me! I've always kissed him, usually it lands on his forehead. But one night right before bed, I said "JD can I have a kiss?" and he came up and kissed me right on my lips! I was so happy my eyes teared up. It was one of the best experiences in my life. There's nothing better :)

He also went to see his first movie this month - Toy Story 3. Thanks to AMC movies, they do a "sensory friendly" showing of kids movies where they are aimed towards kids with autism. The lights aren't turned off and the noise is turned down and they can run around and make noise. It was actually nice to be in a group setting with people who totally don't care if my child is loud! Everyone was in the same boat!

All in all this month was wonderful. I'm hoping each one gets better and better. I'm really thankful because I've met two new friends - Margo and Andrea - their boys go to JD's school and we've all become friends. I'll be sad this August because their boys are off to pre-K, they're 2 years older than JD. But it's been so nice to have some friends who understand our everyday struggles!

Lovin' It!

Last week was a big one... it was JD's first week at his new preschool that focuses on sensory integration. So far I love it! He seems to be doing really well, much better than I thought he would! He's also doing great in OT and Speech, which are through the same therapy center. I think the schedule and the routine have made things easier. This week he's done great - he's not crying or having a meltdown when we walk in and he's waiting to go into the classroom instead of trying to break down the door. Today was great because he really enjoyed his OT session. One thing I'm really interested in is called Therapeutic Listening. Right now JD has to listen to a therapeutic CD for 15 minutes on headphones. Eventually (once he's got the hang of it) he'll listen to 30 minutes, twice a day. It's really interesting! I read more about it online and I think it's a great way to help him organize his world. I can't explain just how happy I am that we're on the right track now! :)

Let the Race Begin!!!

One word to describe my feelings?.... excitement!

I've been waiting for this weeek for a while now. JD officially started his therapy program on Monday and so far it's been going as good as expected, but we're all worn out! I feel like I have a full time job again and it's only the second day!

Monday/Wednesday/Friday mornings he'll be in his preschool program called PowerMeKids. It's a school based in sensory integration therapy. Yesterday was his first day and I think it went pretty well. They said he enjoyed the "Giggle Yogalates" and the obstacle course, but had a hard time with the more structured tasks. He's two - so it's hard to determine if that's more just part of his age or part of the autism. I think it's partially both.

Tuesday/Thurs mornings he's in speech and occupational therapy. And then every afternoon after his nap he's in therapy. Monday he has another speech session, Tuesday and Thursday is behavior and Wednesday is Music Therapy.

I'm just so happy it's finally here and I feel like we're making progress to getting him help! Thanks to everyone who is supporting our family through this big change in our lives!

May Accomplishments

May was a LONG month, but we got A LOT accomplished. Maybe not a lot therapy-wise, but a lot in planning for therapy to start. Starting on June 7th (next Monday) JD will begin his therapy program. He'll be getting 20 hours a week of various therapies: sensory integration therapy, occupational therapy, speech therapy, behavior therapy and music therapy. It's going to change our world completely! It feels like every minute of every day is scheduled, but for a Virgo like me I guess that's not all that bad!

JD also had some great accomplishments this month... he started saying a few more words: beep, beep! ash-ee (for ashley), nih-nih (for night-night), here you go, sip-ee (for sippy cup), biscuit, and probably a few more that I can't remember right now. Of course the funny thing is that he never says these words around his speech therapist so I'm sure she thinks I'm crazy when I tell her that he's saying all these words!

I'm REALLY excited for therapy to start next week! I feel like it's like a race to start and I'm sitting at the start line just fidgeting waiting to run!

Top 20 Reasons Why Moms of Special Needs Kids ROCK!

This month has been especially tough for the Graham Fam... I've been sick for about 2 solid weeks and I'm finally feeling better. This week I get my wisdom teeth out and hopefully by the 1st of June I'll be a new lady!

I found this post on the Autism Speaks FB page and I thought it was too cute!

The Top 20 Reasons Why Moms of Special Needs Kids ROCK!

1) Because we never thought that "doing it all" would mean doing this much. But we do do it all -- and then some.

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes for our kids to learn something new.

4) Because we have heard doctors tell us the worst, and we've refused to believe them. Take THAT, naysaying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we gracefully handle the stares, the comments, the rude remarks. (Well, mostly gracefully.)

7) Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good!

8) Because we are strong. Man, are we strong. Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches and cheerleaders. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our hairstylists, of course.

14) Because we inspire one another in this crazy blogosphere every single day.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing for our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever.

20) Because ... well, you tell me.

Maybe it's just Sensory Integration... I hope

Here I am again, I can't sleep and my mind is wandering all over. About two weeks ago I ran across a great website called http://www.autisticlike.com/. It's a story of a family whose son was diagnosed around the age of two with autism. They started ABA therapy and a few months later had a gut feeling that it was something else, not as much autism but something they couldn't describe. This is my life... I've had two medical doctors give JD a diagnosis of autism, however I'm still not quite sure. Some days I totally see it, but other days I think things just don't quite "fit" into an autism diagnosis. Well their story ends with finding out that their son has Sensory Integration Disorder. They created a DVD about their story which is really great and I recommend highly.

Sensory Integration (SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Sensory Integration Disorder is a condition that exists when sensory signals don't get organized into appropriate responses. It makes it difficult to process and act upon information received through the senses, which results in challenges in performing countless everyday tasks. All kids with autism have sensory integration disorder but NOT all kids with sensory integration disorder have autism. Confusing right?

JD had two evaluations today - one for OT and one for Speech. The OT eval took about an hour and went well, minus the tantrums and crying at some points. Then we met his new speech therapist Holly. We took JD into the room and she watched as we interacted with him and let him play a bit. Also after 20 minutes she said to us, "I don't think it's autism. I only see sensory integration issues." Let me tell you how much I feel like a ping-pong ball going back and forth with doctors and therapists. Our initial diagnosis of autism was in March, so we started ABA (behavioral therapy). Then I had a gut feeling something wasn't right, after doing research on my own I saw more sensory issues than autistic issues so in April I took him out of ABA and started looking into other options. Then last week another doctor evaluated him and said autism, and then today a therapist said it's sensory integration disorder. AHHHHH! Well I'm going to do two things...

First - I'm following my gut because if I've learned anything in life it's that your gut is usually dead-on. I believe JD has sensory integration disorder and from this point in time I'm going to do everything I can to learn more about it and ways that I can work with him to help him at home. Luckily the preschool he's starting at next month is based in SI (sensory integration) which means that everything they do during the day is based on helping manage/develop/correct their sensory issues.

Second - I'm going to stick with the "autism" label because it's what insurance recognizes for therapy purposes. Well since all kids with autism have SI, then their therapies focus on this area. Occupational therapy is designed to help with the sensory system and luckily our insurance will cover occupational therapy if JD has a diagnosis of autism.

So here's where I get frustrated... how do I know if he's one of those kids with sensory integration disorder who DOES NOT have autism or if he's really autistic and has SI? I guess time will tell. Kids who are not autistic and have SI can grow out of their disorder through loads of therapy. So this is where I'm focusing. I'm crossing my fingers, but not too tight.