In August of this year, Boo began taking Yoga for the Special Child. This program was created by Sonia Sumar, a mother of a Down Syndrome child. Devotees of the program insist that, as with adults, Yoga allows the child mechanisms to relax and center themselves and has additional health benefits. The biggest health benefit for Boo will be muscle tone. Her GI specialist believes most of Boo’s consitipation/diarrhea issues is due to poor muscle tone. Yoga has been said to allievate some of her symptoms. (not 100% certain that there is a information to back it up this claim!) 

For Boo, we have not seen much progress. I think. “J” her yoga instructor feels differently. She says every week Boo allows her to do a little more yoga. Out of the 30 minute session, I think we are up to maybe 7 minutes of yoga and 23 minutes of chasing her around the room trying to get her to sit on the mat.

But the first week, she probably chased Boo for 29 minutes so progress.

“J” was telling me how different her experience is with Boo in comparison with Down Syndrome children (her child included). In her experience, her students have been mellow and while they couldn’t hold the pose they allowed “J” to work the pose on them and stretch them into position by providing support.

Boo is a different story. Boo doesn’t sit quietly or on command. Nor does she understand what is expected of her. She would rather explore the room. Now this is a huge milestone, honestly. Boo used to just sit and observe. But during the Yoga session, there are moments–brief moments–when Boo is attentive to “J”. (hey I take my milestones where I can get them)

There are more moments, now, when Boo is not only attentive but engaged. Boo may not perform the pose, but once in a while she allows “J” to work the pose on her. And because of “J” experience, when Boo has her meltdown “J” is patient and kind and tried to get her back in focus.

I swear the biggest benefit of Yoga for the Special Child is what I have received from it. I have met a great woman with 8 years experience of having a special needs child. With Down Syndrome she has a network of support available to her and her family. As an undiagnosed enigma I am usually drowning in unchartered waters. My meeting “J” and enrolling Boo in her class I have been able to tap into a new resource. One in which I can take what works for her child and try to adapt it for Boo.

Not only do I receive ideas from “J”, I have found a compatriot in the process of therapies, schools & teachers (our children attend the same school system). For example, “J” did not know that where we go for our SPT/OT/PT also offers pool therapy at their sister facility. I did not know that there was a therapuetic horse program in the next town over.

I learn something everyday with Boo. One of the most important things I have learned is that you can have 14 doctors, 10 therapists, 4 school teachers and 5 different aides. But without another special needs parent to learn from you are doomed.


To find a Yogi in your area or to learn more about this program please visit: http://www.specialyoga.org/

And don’t forget…October is Down Syndrome Awareness month!

I am not crafty. At all. Need something cooked or baked? I am your girl. Need a hem or a craft project or anything that requires cutting a straight line….then you need to call some one ANY one else.

Last year Allie had a great idea for pumpkin carving. Why can’t they just sit on the front porch? I have no freaking idea. Anyhow, Allie picked out some stencils and said it was so easy I could help her.

Yeah right. It was a disaster. We turned the pumpkins around so their backs were to the street. We did not want them embarrassed.

This magazine showed up in my office today. As a joke, I brought it home to Allie and said we should this.

She asked if I remembered how I killed (yep, she said killed) her pumpkin last year. Then she called her Auntie K and said I found this great magazine for us!!!

That’s my girl 🙂

This morning I had a workshop day at Boo’s school. I had no idea what to expect. In all honesty I almost skipped because I had a meeting at work that was impossible to reschedule. I thought it was going to be like Open House at Allie’s school where some one might notice a parent wasn’t there but would understand that hey people work.

Then guilt crept in so I planned on being late and getting the kick at work. But thankfully my boss had an emergency and he rescheduled the meeting. Bonus he didn’t realize I didn’t make it in until after noon 🙂

I dropped Boo off at her morning program and killed time reading the JD Robb book while I waited for the workshop to start. (Hey I will take my 1/2 hours when and where I can).

What I didn’t realize is that I would have to walk past Boo’s class on the way in. Where I saw “normal” 3-4YO playing appropriately. Where I saw the teachers not letting Boo progress up the hall to meet me because she refused to say “Come On” as they commanded her to do. I totally get that she has to be obidient. But really, keeping her in the hallway for 45 minutes just because she wouldn’t say a phrase on command.  I understand they are trying to curb her stubborness. But I was thinking to myself let’s not turn her into a trained monkey!

(photo credit: google images/trained monkey)

I also did not realize that she would be attending the workshop with me. That I would be the only parent there, in the room with four of her aides and the leader of the SPED/ABA program. Basically a bird’s eye view of what they do with Boo when she is not in the integrated preschool.  They went through all of her discrete trials with her and I was able to see why she is so exhausted at night.

They have more patience than I do. If I asked Boo to touch her head and she refused, I would move on. But they do not. They hand-over-hand the request and then ask again. She had to do it 5 times before she was allowed to get out of the chair.

Here’s the thing….she didn’t fuss. She didn’t bang her head. She didn’t cry. She did ‘fade’ out where you could tell she went some where else for a time. But eventually she “performed” how they expected her to. It took almost a half hour, but she did touch her head five times.

Part of me wonders if I can send the crazy puppy in for training. The other part of me wonders how I can possibly replicate this at home. I cannot wait 45 minutes for her to say hello to some one. I do not place a high importance on her touching her head just because I asked.  I’m happy if I ask her where her belly is and she points to it.

I question if demanding she follow commands is as important as teaching her how to color. I mean really, how many 3YO follow commands?

I do see the benefit of the program. I have definitely seen improvement in Boo’s receptive language. Her speech has come so far and I give this new program the credit.

I just wish I had their patience!

I know. I am supposed to want Boo’s teachers and classmates to treat her just like everyone else in the class.

Last week Boo was sent home with the letter bag. She was supposed to go around the house and find four things that started with the letter “A”. Come on people, how was she supposed to do that? So Allie had extra homework that night and had to help Boo find things that started with “A”. Here is what she put in the bag:

• Picture of Allie
• A from the alphabet puzzle
• Apple (totally blowing the whole no food from home during class in the classroom policy)
• Acorn

Then this week, what comes home? The SHARE bag (what we old folks used to call Show & Tell). Boo was supposed to bring in something she wanted to share. Really? Hey Boo what to do you want to share? Again, come on people! 

So mom of the year that I am….I found two of the most obnoxious things that Boo likes. Bubbles and a Car that you shake and then it vrooms around the room saying Thanks Homeboy from Cars2.   

Boo loves the car. She cannot work it, but she can shout SHAKE at the top of her lungs until you make it work. 

Being the fair, mother of the year that I am striving for I held up both for Boo to choose. She chose the car. Yes, I am laughing out loud picturing the teacher with 12 boys in her class wanting to shake the car and Boo yelling them on. 

I thought for SURE they wouldn’t send home another bag. But nope! Last night it was a letter bag for “B”. I’m sending in the bubbles….

Just wait until the  “W” bag comes home 🙂

I am sure it happens in other families. But my mother-in-law and mother have a frequent, shall we say, disagreement on who my children take after. Allie is definitely her father’s child. In looks and temperment. She has my blue eyes but that could also be a genetic gift from her paternal grandfather. But you look at Allie and just know she is her daddy’s girl.

And when it comes to attitude and sense of humor? They are carbon copies!

.



Me circa 1970-something

 

I think it is safe to say that my mom one this particular battle in the war of the in-laws!

I am addicted to The Real Housewives and am sadly distressed that the RHONJ finale was last night.

I look forward to 8pm when the girls are in bed and I can relax with a chilled glass of wine.

I dream of running away to a tropical island. By myself. WIth a cabana boy named Marco whose only job is to bring me tropical drinks.

 I think popcorn and M&M’s should be considered a healthy dinner alternative.

 I love that my nephews text me (and not their uncle) during hockey season

I think people who iron their clothes have way too much time on their hands.

The other day Boo came home with some art work she had done that day. Allie took one look at it and proclaimed, Mom I don’t want to break your heart but there is no way Boo did this!

 Allie looked it over and over and has decided that Boo did ‘help’ by putting the purple scribbles on the picture. But thinks Boo might have stolen another child’s work.

I asked how she can be so sure, and Allie replied, She does it to my artwork all the time!

Yesterday Boo came home from school with a form for me to complete for OT. It says it is to “have my input” as they develop new treatment plans. I know that it will eventually be on some IEP reevaluation form in the next meeting. So I had to answer the questions in a mature matter. 

However, if I could have answered honestly….

• What are some of your child’s favorite activities? Least favorite?
• Well, she has been in school for about a year now, don’t you think you should know what she likes to do in therapy?
• Does your child participate in after school programs?
• Yes, after school Boo participates in 2 hours of secondary therapy at our local Pedi center. Does that count as an activity?
• What is your child’s normal morning routines?
• Well, Boo usually has a hazmat that I have to clean up. Then Boo throws her breakfast on the floor and  laughs at me while I try to clean it up before the puppy gets to it. Then she screams and hits as I do her hair. But she loves brushing her teeth and gets upset when it is over. Then I move my kitchen chairs back into the kitchen and her bed back into her bedroom because as I am getting Allie ready for school Boo has redecorated. We then rush out the door 5 minutes late for school because the puppy gets into something.
• What are some of your child’s strengths and weaknesses?
• Strength–her right throwing arm
• Strength–moving furniture 
• Weakness–Falling down stairs, but she gets that from me
• Does your child use a tablet?
• Hell, no. I cannot afford an IPAD!
• What motivates your child to learn? 
• I have no idea, it changes on a daily basis
• What is something you would like your child to do at school this year?
• To keep her left shoe on

I consider Boo lucky, because she only has to go to the variety of specialists every six-months or so. The problem with that is for some reason the doctors only see patients in clinic one day a week. Hardly any of them are on the same day!

Because we have to travel over 2 hours (if there is no traffic) for Boo’s speciality appointments, I try to bundle the appointments together. As I scheduled one appointment for GI I asked if she could see Dr. R at the same time. Dr. R is Boo’s specialist for her laryngomalacia. For the uninitiated, this is a congentital abnormality where your throat muscles are “soft”. If your child has ever had a stridor that is what Boo sounds like when she is excited or breathing heavy. She used to aspirate her liquids so we had to make everything the consistency of a thick shake. Over time we gradually trained her throat to take thinner liquids.

Since I know that Dr. R sees patients in clinic the same day as the GI and Pulmonary doctor I tried my best to coordinate the appointments (another aside–shouldn’t there be some one who works at the hospital that can do this?)

Okay, that was a long aside 🙂 Anway to continue…..

I get an e-mail a couple of hours later:

— 1 —

I think that I have to admit that I still haven’t started training for the 5K. But I hope to by next week. I think I might have enough time, barely, not to embarrass myself.

— 2 —

I think I might have been hit on the head, but I am allowing Allie to have a friend over after school. They are taking the bus home together. Usually I try to discourage ‘playdates’ something about having other kids in the house and knowing I am supposed to be the calm/rational adult. Add in the crazy puppy and Boo. YIKES. And of course, my husband mysteriously took an overtime shift. Funny how that happens.

— 3 —

I think Allie has finally come to terms that her mother is not crafty. She had a project for school, decorating a vacation bag, and asked if we could just skip mom trying to help her and call Auntie K. Now, this is something I totally could have helped with, but I don’t want to start a precendent.

— 4 —

I think Boo is spending too much time with crazy puppy. Not only is her hair and his fur the EXACT same color, she now keeps sticking out her tongue and panting.

— 5 —

I think if Tia lived closer we would be a lot less stressed. But our husbands would probably miss us!

— 6 —

I think that Boo’s new special-ed program is the best thing that could ever happen to her. She has made so many advances this summer it is amazing. But it was also easier when I didn’t have to look around the house for where she put my kitchen chairs.

— 7 —

I think that the weekend is here. I don’t know what Allie is more excited for: her playdate, apple picking or the fact that she doesn’t have any math homework!

For more Seven Snippets, visit Bringing the Sunshine!