Therapeutic Listening

Bert started a therapeutic listening program at school last month. I had gone to a conference in which there was an available sectional on the program, and after the conference, I asked Bert's OT about it. Since his school already had the equipment, and since it's something that I couldn't see causing harm, we got him on the program.

Now, about a month into the program, I am seeing increasing self-control. Increased ability to follow directions, and increased bodily function awareness. In other words, for Bert, therapeutic listening works.

Last spring, I was told in Bert's IEP that he may never be verbal, at all. Now he uses 2-3 word sentences consistently, and some longer sentences. He had multiple autistic symptoms, and his behavior, especially in public, was dreadful. All of this static made it very hard to see the person who is my son. As the year went by, and we he changed schools, added hours to his school day, and got on a sensory diet at home and school, he has slowly become the little boy that I'd only ever seen glimpses of. Now, with some small exceptions, that little boy is always coming through, loud and clear.

There is something downright miraculous to this transformation. It can be attributed to multiple factors and people, but really, the sum total is a miracle. This is nothing short of my heavenly father returning my prodigal son to me. I am so incredibly grateful.

The Bell Curve

Bert had his first full psych eval done at school. This is done primarily to assess the IQ, and assist in determining placement. This is a quick explanation of the IQ bell curve. See the very bottom of the curve? That lowest percentile of people? That little tip of the bell that is <60? That is Bert. He's down in that teensy bit of bell.

I am not a delusional person. I have a pretty good grasp on the daily living and cognitive skills of my son, and I know that he functions still about at the level of a 2 year old, more or less. He turned six last week, so I have been parenting the same growing child, now 50 lbs as a 2 year old for about 4 years. We have effectively ruled out the autism aspect as instead severe Sensory Processing Disorder coupled with a very low IQ and ADHD. Honestly, I'm not convinced that the ADHD is accurate. C'mon, what kind of attention span do you expect a 2 year old with SPD to have?

Alas, it is difficult to read a report in which your child's intelligence is graphed and documented in formal language by a licensed psychologist that states your son tested low compared to his same age peers, over and over. It sucks to see a number that has been referred to as "trainably mentally impaired" or "severely mentally impaired". Though I did not relish reading it, it was like reading a story that I'd heard over and over again in spoken word. The document was newly drafted, but it was not unexpected. I was pleased with myself that I handled it as the information that it was, no big emotional breakdown required. Yet still, I can't seem to get my mind to let go of the graph of my son's IQ.

When Did This Happen

I was reading on a discussion forum today and started crying. By God's grace alone I was able to respond in what I think was an upbeat manner, we'll see how people react.

The problem was language. The thread was about a potential adoption opportunity in which both of the birth parents have some form of seizure disorder or mental disability, it's hard to tell exactly.

The overall note of the thread was open, honest and good. What bothered me was that a few posters used terms like "suffer from a disability" or "Down syndrome babies".

Have you seen the photos of my boys? Are they suffering? Are they defined by a third 21st chromosome, giving them a title of Down syndrome baby.

These little stinkers amaze me so much. I think of Schmoozer. Born with 5 weeks early with Down syndrome and Hirschsprung's disease (which was not treated until he was 15 months old). Developed Hypothyroidism and has moderate to severe hearing impairment, and deals with Cyclical vomiting syndrome to boot. Yet this little man is so full of life, so ready to give each day his best, so bright and beautiful! He has so many knocks against him, yet he's out to rule the roost and live the good life.

And Bert. Again, born with Down syndrome, his sensory systems send crazy mixed signals, he has to work hard to find a word he wants to use, and even harder to get his mouth around it. But his is such an incredible little person, he brings a smile and light everywhere he goes, and digs in and gives his best, he meets each challenge he faces with eagerness and excitement.

My sons are not suffering with mental retardation. They have not been afflicted, and it doesn't define them. They are children of God. They are beautiful and incredible. My biggest wish is that the whole world could see them as I do!

I'm putting it Together

2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2

For the first time in a long time, I am hoping that things are all adding up, that we are getting somewhere, and that there is a break in my reasonably near future. Schmoozer's getting hearing aids. That is the last of the significant medical stuff we've had going on with him. We've been able to manage his Cyclical Vomiting better since we know what it is and have meds to deal with it. I can hardly believe it's been 2-1/2 months since he's been admitted to the hospital! He was admitted 8 times last year, for at least one night, and up to 10 nights.

We have Bert's sleeps study done, we have Speech lined up (waiting for the therapist to get approval from our insurance to start), he's doing well in his new school. So once we get the sleep study results and whatever treatment is required (possible surgery?), we should be sailing pretty smooth with him too.

Beaner is hanging in, but needing extra lovin'. Rockstar has an enormous Grad Party to prepare for, but that's cake.

I think I see light at the end of the tunnel, and I think I like it. What would a semi-normal family life be like?

Wordless Wendesday ~ Sleep Study With Bert

Simply Amazing

This week I found out that one of the most overwhelming, horrifying events of my life has turned into a blessing.

Bert has been visiting a multidisciplinary behavioral resource center where he has gotten psych evals, PT evals, sensory evals, and stands to get OT and speech evals. For years extra speech therapy is something we've known he needs, wanted for him, but simply could not provide financially. The speech therapists at school have varied in expertise, energy level, and willingness to got he distance for him, and his current SLP is above and beyond the others he's seen. Yet it's only a bit of time each week, and with the difficulty in communication between school and home, follow through is just what I can manage to figure out.

So now, after his pysch review, we have realized that Bert's birth (as written here) is his ticket to speech therapy. Down syndrome is a developmental disability. Insurance companies won't and don't usually cover therapies for developmental disabilities. But alas, insurance companies do cover therapies for traumatic birth and hypoxia at birth, both of which Bert had. So here we are, happy to find out that indeed, we can get his speech therapy covered.

Now, enter our local Down syndrome speech guru. LK has partnered with the Down Syndrome Association of West Michigan and Talk Tools and has educated herself as a specialist of sorts in speech issues of children with Down syndrome. If you have DS in this area, she is the SLP to see. By amazing blessing, Bert has been placed on LK's schedule, and will be evaluated and treated by her, courtesy of our insurance. It is simply amazing, overwhelming. The Holy Grail has been handed to us. I am grateful beyond words.

Now, as a kicker, once again I have found the opiate of validation. You see, our psychologist realizes that kids like Bert don't *just* respond to normal or even excellent disciplinary measures. That even the most together and consistent parent cannot always manage a child like him, and that when you have a child like him you cannot always be the most together and consistent parent. We are in a marathon, not a sprint. Bert will not be sleeping through the night tonight just because I use the right interventions, Bert will not behave in public this week no matter how good of a mom I am. But someday he can and will, and now I have another partner to help us get there. Oh, Praise Jesus, we'll get there.

This is What I've Been Doing

I made Bert a Sensory Tunnel. It's supposed to resemble this one,


but we're working on coming up with handles. Rather than paying $190 + shipping, (yep, I had to pick myself up off the floor after reading that price.) I made one for about 1-1/2 hours worth of shopping and work and the cost of material. If you want one, email me aleejom@yahoo.com) and we'll see what we can do, I'm thinking of selling them for ~$40-$50. This one is 9 feet long, but the size can be adjusted, as can the color.

I also can make a weighted quilt. :-)

Teenage Girls

I wouldn't wish one on my worst enemy. Seriously.

I can deal with Cyclical Vomiting Syndrome, Down syndrome, Hirschsprung's Disease, Sensory Processing Disorder, ADHD (that's what Bert's autistic symptoms turned out to be), ANYTHING, but the teenage girl.....Lord help me!

Bert

I'm gonna be frank. Bert is by far the highest maintenance kid of all the high maintenance kiddos I have. I'm pretty sure that if I crunched numbers he would be in far more blog posts that any of the others. (I don't want to actually crunch the numbers, I'm afraid it will be overwhelming). No matter what else is going on around here, Bert is at the forefront. The other kiddos have trials that come and go, but he is always up there in at least the #2 position, if not #1 for needing attention.

This week, once again, Bert is at the forefront. I can't believe I haven't posted more about his new school. We are finally getting him into a very structured, all day 5 days/week program that runs year 'round, this year going until mid June, then reconvening in mid July. They have an incredible Sensory Room, and I believe will be a place where he can finally actually meet some IEP goals (I hope). Friday we hold the transfer IEP, and set a start date based on transportation and the hiring of the new aid. (Yes, they are hiring and aid to get him in there.)

But prior to that, on Wednesday, we go for part 2 of his psych eval. The first meeting, I went and discussed my concerns, this one, he will be evaluated hands on while "playing" with the neurodevelopmental psych and the AI specialist. I believe we will go home with a diagnosis, and I believe it will be PDD-NOS.


Despite the obvious stress of appointments of this type, I feel as if I'm on the very brink of a breakthrough. If not in Bert's behavior and learning, then in getting him what he needs. The sheer fact of the matter is that I'm not convinced we will ever really have the breakthrough of development that he always appears to be approaching. Only time will tell that. Our breakthrough is in management of our resources. I hope to have Bert settled in enough so that his needs are not always at the top of the list. So that I can have more energy, more joy and pleasure in all of my kids, so that he will not always have me totally tapped out. Here's hopin'!

Sensory Diet

OK, so we get our official Sensory Diet for Bert today. Here are some Highlights:

"Need or Problem: Low Registration, Seeking, Sensitive, Avoider (circle one)"

Um, they're all circled....

Then,

"Basic Sensory Problem Difficulties with vestibular, proprioceptive, oral, touch, autitory, multisensory processing; difficulties with modulation."

Um, that kinda means that he has every sensory issue you could come up with, he doesn't sense smell, but since that's not really bothersome to him, it's not listed.

Is it any wonder I couldn't come up with a good Sensory Diet by myself?

Off we go to get a medicine ball, vibrating massager, and a Theraband.

Are YOUR Senses Integrated?

Mine are not, and I've realized that that is indeed a blessing.

I am an auditory person. I hear things, and am almost entirely unable to block out background noise.

Yesterday, my dear husband was using the computer, which is about 3 feet from the sliders. Rockstar was on the couch, not 10 feet from the sliders, and I was in the kitchen making some crazy delicious cinnamon rolls, but that's another post.

So, I walk into the living room, and ask, "Where's Bert?" That phrase always gets a household adrenaline rush going. We shift into high gear and go Bert finding. Alas, we are all going our separate ways, and realizing that nobody has the answer to the big question.

"The sliders." I say. The Chief peeks out the back deck, and sees Bert blissfully rubbing his hands and feet through the sand in the sand box. Bert is found.

We demanded accountability about the sliders secondary lock being left undone (there are secondary locks on all our doors, as Bert emulates Houdini) and I realized that though I was the only person who was not in the same room as the sliders at the time of the escape, I was the only person who had registered the sound of the sliders opening and closing. My auditory hypersensitivity saves the day.

Feng Shui

I have been trying to find my niche for a long time. Once upon a time, I was a Paramedic. It was something I had a passion and drive for, it got me really ticking. The time came for me to end that career for multiple reasons, and I have been a SAHM/WAHM since. But I don't feel like I have a niche. My WAHM job is slowly winding down, and I've been looking for that one thing that revs me up. I have a feeling it's got to do with Special Needs in some aspect, but not quite how.

The epiphany came. Feng Shui for Sensory Processing Disorder kids! I would always be in demand because Sensory Processing ebbs and flow so much. I could just redo the Feng Shui in the houses monthly, and keep a lifelong income coming in.

This comes about as our living room appears different yet again. Bert and I have been doing "heavy work", and of course, the simple act of moving the slide, trampoline, rocking horse, bean bag, hoppity horse, and sensory bin that occupy my living room make all of those things so much more appealing.

So it may not make a career, but it might make a lifestyle.