Archive for March, 2009

Parents’ Rights in Special Ed Training

Sunday, March 29th, 2009

There’s an organization in Phoenix called Raising Special Kids. One of the things they do is provide training. I’ve seen the trainings advertisements, but never went to any of them until last week. They had a class on parents’ rights in special education. Since a few things during Maria’s IEP meeting made me feel a bit uncomfortable, I thought it was timely.

The instructor (Vicki) was excellent. She has a 12-year old daughter with similar issues as Maria, so she could relate. 5 parents were there, which is a good size since it was in the middle of the day in the middle of the week. She went over IDEA, Title 15 of Arizona Revised Statutes, R7-2-401-405 of Arizona Administrative Code, Section 504 of Rehabilitation Act, ADA. She talked about the steps of the IEP process (evaluation, needs, goals [IEP], placement) and said that the parent is the leader or facilitator (can’t remember her exact words) of the IEP meeting (really?), and differentiated between the parents’ rights and their responsibilities. It was valuable and enlightening. The only two downsides were that we didn’t have time for much discussion among the parents (where much of the learning occurs), and the traffic was horrendous on the way back. Other than that, no complaints!

The other recent training I went to was at Southwest Human Development, another beautiful building downtown-ish, on feeding. It’s a series of 10 workshops (1/month) by Marsha Dunn-Klein on children’s feeding challenges. The first one was very crowded. They combined the parents and therapists into 1 session because of budget woes. She provided an overview of the “get permission” approach to feeding your child. The premise is the parent determines what the child eats, where, and when. The child determines the pace. It’s all about building trust and reading signals, etc. It’s similar to what we do with Maria–with a few tweaks. I’m looking forward to attending more sessions, this one was rather general. Again, it was short so not much time for parents to talk about their stories. The website, PopsicleCenter.com, has more info.

I suppose I’m going to have to read the laws and regs to become an even stronger advocate for Maria. I’m curious how much of a challenge her new school will be. Since they’re only in their 4th year of including special needs kids in with the general education kids, they’re new at it. They seem overwhelmed by all of Maria’s needs, but as Andy said, Maria will teach them a lot! I just need to work with them to make sure they and she are successful… (and finish the taxes, and complete the assignments at work that I’m behind on, and, and, and…)

At work, they’re getting even more serious about ensuring all the documents we put on our website are 508 compliant (section 508 of the Rehabilitation Act requires federal governments to make all electronic files accessible to their employees and to the public). I thought we were already doing that, but apparently there’s a few steps we forgot. I told the division chief who’s in charge of it that this is very important to me because of my daughter and he told me that he thinks of her everytime we do something with 508. That was a nice compliment. I’m never sure how much my co-workers know about Maria…so that was real nice to hear.

Maria the Expert Rider

Friday, March 27th, 2009

Maria continues her superstar performances this week with her best hippotherapy session ever. She sat up straight for nearly the whole session and held her head up a LOT. The therapist said she counts how long Maria holds her head up, which is usually about 5 seconds. Today, when she got to 30 seconds she just stopped counting because Maria wasn’t going to quit.

I’m glad she had such a good session because she’s going to miss the next two weeks. Next week Maria is going to Nebraska to meet lots and lots of cousins and the week after the hippotherapy place is closed. It’s also not that long until they shut down the therapy for the summer, but that’s about the time the special needs pool opens so we can do that instead.

Barium Swallow – Yay Maria!

Monday, March 23rd, 2009

Maria had her barium swallow and did GREAT! It’s her second best one ever.

Thicknesses of liquids are measured (from thickest down) using the labels honey, honey-thin, nectar, thick, thin (like milk), very thin (like water). Maria is currently on honey-thin.

We had been concerned about how well she was going to perform, but her breathing has been so good lately we started to get optimistic. Ever since the Jin Shin Jyutsu lady did the “lung energy” treatment, all of her breathing problems went away and she hasn’t been breathing rough after eating or drinking. However they kept us waiting so long that Maria was getting tired so we went back to being worried she’d do poorly.

Usually it takes some time to get her drinking once the test begins, with the hospital people nagging us to get moving. This time, Maria started drinking almost immediately. She took nectar and thick with no problems other than a little pooling (liquid gathering in hollows in her throat which could in a worst case drip down into her lungs). They tried thin and she had a silent aspiration, which means some of the milk did go into her lungs and she didn’t cough or choke. She did react and Cathy could tell what had happened even though she wasn’t looking at the monitor, so she does have signals we need be aware of.

So the speech therapist said we can go from honey-thin all the way down to thick. That means adding only half as much thickener as we have been! We may not make one big jump though. I think we’ll probably go to nectar for 3-4 days then down to thick.

As good as this on was, her best on was her September 2007 barium swallow where she went all the way down to ultra-thin without aspirating. However she was just showing off to annoy the idiot GI who kept insisting on tubing her.

In other good Maria news, she did several unassisted steps forward in the walker yesterday – first time ever! She’s done assisted steps or pushed backward, but this is the first time she was forward. Go baby go!

In other news, the little ball of…sugar broke her Uncle Andy’s glasses for the third time in less than a year. I’m going to either have to switch to contacts (spend money every month for life), get a new pair of very sturdy frames (very expensive) or get several pairs of really cheap frames. Or never get within arm’s reach of her, but that’s not going to happen.

Education and Energy

Monday, March 16th, 2009

Maria had her IEP last week. It covered both the last couple of months of preschool plus kindergarten. Maria brought her army: me, Cathy, Sue, plus her PT, OT and speech therapists.

Kindergarten for some reason uses a different set of labels to determine what care kids need, so Maria finally has officially gotten the MR term (mentally retarded). The designation isn’t a surprise, but it’s still a grim milestone. However Cathy and I were actually pleased – they labeled her “moderate” rather than “severe”. We both expected severe, but the psychologist said she tests firmly in the moderate range.

IEP planning was complicated by the fact that there is full-day kindergarten now but it is almost certain to be reduced to half-day as part of the state budget cuts. There will be the option for each student to go full day if they pay some fee ($250/month I believe) and we agree that Maria would benefit from it. Apparently the school actively discourages disabled kids from going full day because it costs the school more to have the aides and therapists. They don’t actually forbid it because that would be incredibly illegal (of course, so is discouraging them but…) but Cathy is prepared for them to try to talk her out of it.

Other than that, Maria is doing really well. She’s making a lot of cognitive and sensory jumps, and we don’t think it’s coincidental that this started when she got back to regular Jin Shin Jyutsu treatments. What’s *really* interesting is that Maria’s breathing has still been lousy so the woman did some kind of “lung energy” treatment – and Maria’s breathing has been completely clear since! As whackadoodle as these treatments seem, there is no denying that they help.

Yesterday we took Maria to the Aloha Festival. I’m not sure the music registered much with her but she liked the bright colors. Sue was there since she’s from Hawaii and Maria got a little extra Sue time.

This week is spring break so Maria’s got things pretty easy. Next week is her next modified barium swallow. As much as we’d like her to do well, we suspect she probably won’t. But her regular speech therapist will be there which will be helpful. Cathy heard from another mother that she doesn’t get her kid’s barium swallows at PCH anymore because they are so “rush, rush, rush” about it. She get hers at Banner and likes them a lot better, so we might do her future ones there. Then shortly after that is the Nebraska trip. Cathy called to reserve a room and the block that had been reserved for the reunion is already sold out, so it sounds like there’s a big party a-brewin’.

Back from Portland

Monday, March 9th, 2009

I was in Portland, Oregon all last week for work. It was wonderful to be back in Portland, seeing old friends, making new friends. The conference turned out great. Of course, I missed Maria and Manolis, and it was great to get home–too bad my friends, laryngitis and exhaustion, came with me. Maria was asleep when I got home. She stirred a bit when I kissed her, but didn’t wake up.

Saturday morning at about 6am, I heard Maria yell. That’s usually her telling us to change her diaper and/or bring milk and/or I’m hot or cold and/or I want to crawl in bed with my mommy. I knew what Saturday’s yell was about–my mama’s home!!!!! I went in to get her and she immediately gave me a huge smile, followed by a big, long, strong hug–my favorite kind! That’s the first time she’s given me the immediate feedback. Usually I get the cold shoulder for a while, then subtle recognition.

We’re taking her back for Jin Shin Jyutsu treatments again; she’s been standing more, walking a bit more, and moving a lot more on the floor (rolling, army crawing)… Could be a coincidence, could be a cause-effect relationship. Doesn’t matter. We’re going back to weekly treatments to see if we can get Maria back on track. Maria has back-slid on standing and walking, but is making great progress on army crawling, pulling up on furniture, rolling, getting up on all fours and rocking–movin’ and groovin’! hmmm, Jin Shin or just feeling better?

Her breathing has been AWFUL (rough) over the weekend; today wasn’t so bad. Kinda freakin’ out the mama.

Went to see Dr Ellis (neurodevelopmental pediatrician) today. She’s worried about Maria’s scoliosis, as am I. She thinks Maria needs a back brace and she’s usually fairly spot-on. Phoenix Children’s Hospital has orthopedics now, so we’re going to see someone there rather than waiting a year to see the Shriner’s again. Dr. Ellis wants us to work on getting Maria’s shoulders back and down to open up her lungs more. The PT needs to check out our car seat and see if Maria has enough protection and support for her head if we’re in an accident (yea, that’s 4 car seats really–my car, Manoli’s, Andy’s, Sue’s). The doc is going to check into travel seating, you know, something to replace the Sit ‘n’ Stroll for the airplane and car. Sure hope Maria still fits in the Sit ‘n’ Stroll for our Nebraska trip. I can’t remember what all else Dr Ellis said, I got pretty stuck on the back brace thing (Andy usually comes to the Dr Ellis appts, but this was a last-minute cancellation, so no chance to rally the village). She said the good news is Maria is improving every time she sees her, the bad news is it’s slow.

I just finished Kathleen Morton’s book, The Unconquerable Spirit, about her daughter who had seizures at 5, went blind at 8, wasn’t diagnosed until 15, and slowly lost the ability to talk, walk, etc because of Batten disease. It’s a great book about all the many, many things Kathleen got changed in New York and Arizona for her daughter. Things that didn’t make sense, or things they were doing that were against the law. She was current on all the laws (state and federal), usually went to the top of the agency, usually got her way, and didn’t back down. The book was inspiring and traumatic at the same time. When you have a special needs child, you have to fight constantly on many fronts to give him/her what they need. Case in point, I’ve probably called our DDD service coordinator’s supervisor 3 or 4 times trying to get another service coordinator assigned to us because the current one doesn’t fit well in our village. At all. And he’s still giving me the run-around. Now with this budget cutting nightmare, I’m sure they’re all trying to save their own butts. And I need to get off mine and write some letters; the services they’re cutting are appalling.

Tomorrow is Maria’s IEP (Individual Education Plan) for the rest of preschool; they’ll use it as a kick off to her kindergarten IEP. Maria is a very complicated girl with many facets and it seems to have the preschool teacher stymied a bit. I spoke with the school PT today about goals, etc. She argues with everything I say. She had a walking goal, I asked her to add a standing goal (which I said she could add to the walking goal, she said no), and a floor goal(s)–independent sitting on the floor, and rolling/crawling/pushing up from prone. She said that’s 4 goals (standing, walking, sitting, rolling/pushing up); if we had 4 goals for OT and 4 for PT and 4 for speech, etc that would be too many, so which 2 are the most important to you. hmmmmm, let’s see, out of standing-walking-sitting-floor moving, which isn’t important for my child? Yea, whatever. When I mentioned that our home PT, OT, speech, mom, uncle, nanny, and child would be there, the school PT said, “you’d better let them know we need a bigger room.”– not in a good way. Again I say, yea, whatever.

Good Days and Bad Days

Sunday, March 1st, 2009

Maria had a bad day Friday. She had a seizure during hippotherapy so they cut the session short. On the way home she had a couple more, then more at home so I gave her a clonazepam. This, of course, turned her into a zombie for the rest of the day which is never fun.

However she actually did fairly well. She had her speech therapy session two hours later and, though she was pretty laid back, she was looking at and reaching for things, making choices, and so on. She just did everything in slow motion. I was pleasantly surprised at how good her vision was. Normally when anything is bothering her, her vision is the first thing to go. But she was actively looking and tracking even when drugged to the gills.

After about six hours she got a burst of energy and was very active for about a half hour. Then her energy crashed and she was quiet for an hour, then another half hour of activity, and so on. That was encouraging because normally she’s just a blob for about 24 hours after clonazepam.

I was concerned because her breathing was noticeably more labored; the speech therapist noticed it too. Clonazepam, like all seizure emergency meds, depresses the central nervous system and interferes with breathing – not a good thing for someone with respiratory problems. So if we don’t give it to her, the unchecked seizures could cause brain damage. If we do give it to her, she could stop breathing. Life with Maria is never boring. All I could do is keep a close eye on her all day.

Other than that, she’s been doing really well over the last couple of weeks. Her vision has been really good. Manolis took her on a walk a few days ago and every time they’d pass a plant, Maria would reach out to grab it. For her to be able to react that quickly and consistently to a visual stimulus is exciting. She’s been fairly active and lately she’s been trying to climb things like chairs. She doesn’t use her legs much though, just tries to pull herself up by her arms. We’ve had some good luck getting her to sit on the floor. Sue has had her sitting at her little table for 30 minutes or more without falling over. When I’ve worked with her I have to correct her a little, but very little. She catches herself and adjusts her balance.

Although she still isn’t walking much for us, she’s been doing a little at hippotherapy. Two weeks ago she took 3 steps, then last week 8 steps, and this week (before the seizure) she took 16. She still seems to like the stander, though she hates the straps. It’s just a matter of figuring out what she’s interested in at the moment (sitting, standing, etc.) and working with that.

And with all of this, we wonder how the changes to Arizona’s budget will affect her. They’ve already implemented a 10% rate cut for everyone getting paid by DDD so that includes me, Sue and all the therapists. Maria will be less affected by any cuts because she’s on long term care, but kids who aren’t “lucky” enough to be as disabled as she is are probably going to lose services.

Cathy is leaving town as we speak and will be away for a week so Manolis will have his hands full with Maria while she’s gone. Maria loves to get sick right before Mommy leaves just to give her something else to worry about. We’re hoping it will be a quiet week.