Friday, February 5, 2010

Haley in the News.....Again

Haley is becoming such a little celebrity and poster child for the special needs community isn't she??? Here in NC, rumors have been circulating that the state may cut funding to one of the therapies that Haley receives called "Community Based Rehabilative Services" (CBRS) a fancy term for "play therapy". Play therapy may not sound like a skilled, nitty gritty, beneficial type of therapy like physical or speech therapy, and I had my doubts when she first started CBRS. I mean, why does someone need therapy to learn how to play? But once Haley started CBRS, we saw a very significant turn around in her behavior. She had been receiving PT and OT for a couple months before she began CBRS and she was making some progress, but she continued to have a lot of heavy duty sensory issues (not wanting to be touched, having trouble transitioning to different situations, trouble in social situations, etc). Once CBRS started, it was like a lightbulb lit up in her. I think Haley is so receptive to CBRS because it is playtime to her, not work time. CBRS is much less structured than PT or OT, it is more child directed therapy. Her therapist works with her on many of the same goals that her other therapists do, but if she is putting up a lot of resistance to a certain activity, then the the therapist moves on to something else. I think the goal is to have fun and work on specific goals while doing so. Also her therapist, Alicia, is just great with Haley. She has such a gentle way with her and Haley is very receptive to her. CBRS seems to bring in parts of all the therapies and integrates them into a more holistic treatment for Haley. I think it helps her process what she has learned from PT, OT and ST and bring it all together so she can use her skills in a real-life situation.

The director of Haley's school asked me if I would speak with the Gaston Gazette about what CBRS means for Haley and how it has helped her. I talked with the reporter for 10 or 15 minutes and I thought I had given her a lot of useful information that would make a very strong article that would have a lot of impact. I had hoped my interview would have had more substance, but I just feel like the article is lacking the full meaning of what the program is all about, how it helps our kids, what it would mean to loose it, etc. I had hoped it would be a more in depth article, but I guess this was better than nothing. There is a little bit of misinformation, but basically correct. It only mentions Medicaid as a payor source. This affects more than just families who have we (unfortunatly) do not qualify for Medicaid. Anyway, here is the article from the Gaston Gazette which will be published Saturday, February 6th.

Parents worried about cuts in funding for special needs children

(Photo Mike Hensdill/The Gaston Gazette) At Bethlehem Family Life Center, kids with special abilities are helped to develope and grow. Here, CBRS therapist  Alicia Starr works with Haley Buchanan using play therapy.
(Photo Mike Hensdill/The Gaston Gazette) At Bethlehem Family Life Center, kids with special abilities are helped to develop and grow. Here, CBRS therapist Alicia Starr works with Haley Buchanan using play therapy.

February 05, 2010 3:25 PM

Haley Buchanan is about to turn 2, can crawl and is on the verge of walking.

But her mother Laura Buchanan said mastering her motor skills wouldn’t be possible without the help of community based rehabilitative services she receives.

Medicaid pays for community based rehabilitative services, which serves children up to age 3.

A glitch in the state plan’s wording means Medicaid may not pay for community based rehabilitative services as of June 30, said Brad Deen, spokesman for the Department of Health and Human Services.

The department is working with the federal Medicaid authority and the state’s own public health officials to change the wording so services don’t stop and Medicaid still pays, Deen said.

Haley was a little more than a year old when she was diagnosed with Joubert Syndrome, a rare genetic disorder, Buchanan said.

Haley receives “play therapy” to bring in physical, occupational, and speech therapy together, Buchanan said.

“It would be really sad to see those services go away because it helps her so much with her sensory issues,” Buchanan said.

Andee Jenkins’ son was born seven weeks premature.

She learned Ayden was behind developmentally after a trip to the pediatrician, who referred them to the Children’s Developmental Services Agencies, then to community based rehabilitative services.

“Me being a new parent, I would have had no idea what to do,” Jenkins said. “It’s truly been a blessing for us. If that was not there I don’t know how we would have gotten him up to speed.”

The Arc of Gaston County Director Sara Osborne said if this service stops, it could cause a backlog once children turn 3. A developmental disability isn’t something that will go away.

“When you’re diagnosed with Down syndrome, you’ve got it,” Osborne said. “It’s not a maybe.”

Osborne estimates that at least 400 children in Gaston County have a developmental disability.

Michele Stewart has operated Special Kare for Special Kids, a facility that serves children with developmental disabilities as well as those who have no developmental issues, since 1995.

The school operated without those funds for 10 years, but the community based rehabilitative services money has helped a lot of families pay for therapies given by Special Kare staff, Stewart said.

Deen said that some misinformation about the issue has been circulating. The potential pay halt is not because of budget constraints, he said.

“This is a paperwork problem and we’re working around it,” Deen said. “These are actually some very beneficial services. We don’t want them to end.”

Haley and Ayden’s parents, along with those who work with developmentally disabled children, don’t want that either.

“Your child is supposed to be born perfect,” Stewart said. “I can’t imagine getting out there alone.”

“You can reach Amanda Memrick at 704-869-1839.

Wednesday, February 3, 2010

My How Far She Has Come!

Wow, I am a really bad bloggy mama!!! It has been since Christmas since I have written an actual update. The last one wasn't much of a blog, so that doesn't count. I have been very very busy with Jog for Joubert and with running in general, add that with working, and chasing a toddler and things like blogging get pushed to the wayside.

At any rate, we had our 6 month review with Haley's case worker with the Early Intervention program yesterday. We just went over her goals to see what goals she has met and make up new goals for the next 6 months. It has been almost 1 year to the date that we first got involved with the Early Intervention program and little over a year since we started therapy. Sitting down with her case worker and going through her old goals really shocked me to realize how much progress she has made since this time last year. I mean, its not like I didn't think she was progressing, but to look back at where she was and compare it to where she is now, it was breath taking!!!!

This time last year Haley could not even hold on to our hands with enough strength for us to pull her up from a laying to sitting position. Let me repeat......could not even hold our hands so that we could pull her up!!!! At almost 1 year old, she could not roll, change positions, crawl, stand....she pretty much just sat (or laid) where ever you put her. Today she is crawling all over the place, rolls like a mad-woman, can get her self in to pretty much any position she wants, has almost perfected pulling up to standing by herself, walks with the assistance of a walker, and PT has even reported a few independent steps....although I have not witnessed this with my own eyes. There used to be days where I wondered if we would ever see the day that she rolled over, now she is on the verge of walking. It is amazing!!!! Her fine motor skills are just awesome, maybe even a little advanced for her age. Talking, now that is still very delayed. I have yet to hear her say a real word. One of her therapists, Miss Alicia, tells me week after week about all the words she says. I don't doubt this for one second, she just hasn't said anything for us. Haley really likes Miss Alicia, so maybe she is more talkative for her. (and if you are reading this're the BEST, you rock!!!!!) Also I think that I expect to hear words pronounced correctly instead of baby jabber. I have yet to receive my baby language decoder ring in the mail, so maybe once that arrives, I will be better able to understand "Haley Language" LOL!!!! I'm sure language recognition in first time parents is often the reason we think there is a speech delay, we just don't get it. Her sensory processing issues have improved a lot also. Last year, you could barely touch her arm and she would recoil.....that is called tactile defensiveness. She also had a lot of trouble with motion changes and fear of falling. Both of those are much better, but she still does have trouble with certain textures....HATES (almost terrified) of stickers, which is unfortunate because a friend sent us something for a sticker club, now we have tons of stickers and can't use them.....YET!!! She also is not a fan of Play-Doh. But these are all things that we are working on.

On a very silly note, Haley is a total copy cat and will mimic most anything we we thought it would be funny to teach her to do a "fist bump" know just in case she meets Barack Obama she can greet him appropriately. (LOL that one was for you Daddy). Its her new favorite thing to do.

I can't remember what all of our new goals entail. A lot of focus will be put on speech and language. Of course, gross motor wise, walking is our goal. And with cognitive and fine motor skills we are going to be working on typical things other youngsters her age are doing....shapes, colors, etc.

I still have my days where the amount of work that goes into having a special needs child is almost overwhelming, lots of days where I moan and groan "why us" and almost mourning over the "normal" child we expected. It is often hard for me to be around my friends with "normal" children Haley's age....seeing what she "should" be doing. And it is almost maddening when people tell me maybe it is a blessing that Haley is least I don't have to chase her around everywhere. I have come to realize people say this because they don't know what to say, they mean well, but really????? I imagine there will be things like this we will have to endure and deal with for a long time. Although life took a different path than we anticipated, we do not regret anything, nor would we change it. It is what it is.

I'm so sorry I don't have any pictures to post right now. Along with blog neglect, I should be charged with failure to take enough pictures. How many years of blogger jail time does that get me??? This time last year my obsession was photography....couldn't get enough of it, my family and friends were literally sick of hearing about it. Now (20lbs lighter I might add!!!!) my obsession is running, but I promise, I will get some pictures up ASAP!!!!

Speaking of running, please visit my Jog for Joubert Syndrome blog and support my cause. There is information about J4JS on the right side of the blog and several links you may want to visit. I am hosting a raffle for a "runner's gift basket" on that blog sometime soon, even if you are not a runner, there are some great goodies in there for everyone. Thanks!!!!!