Sibling Support

In an effort to raise awareness for rare diseases, Pookie's older brother and sister both submitted art work to Rare Artist! You can see their digital art 

Here: Sister

and 

Here: Brother

Autism Employment Conference

Autism Employment Conference

March 3-4, 2011

Sheraton Westport Hotel - Lakeside Chalet
191 Westport Plaza
St Louis, MO 63146 

Contact:

Joy Bergeron
Classic Events Inc.
joy@classicevents.net
800.296.5954 

Registration Rates

• $205 2 Day
• $125 1 Day
• $180 2 Day Student Rate
• $105 1 Day Student Rate

Facebook Page

Registration Page

Full Agenda

Guide for Vocational Rehabilitation Specialist

Pook in 2011

Pook has always loved to sit in those plastic 4 gallon totes you can pick up at most department and hardware stores these days. He prefers sitting in one filled with bubble bath over sitting in the bathtub. (you may recall a previous blog with a pic) He prefers to take the socks out of our "sock bin", climb in and cover himself with socks. He prefers to climb into a tote with his hotwheels. He even insists on taking his naps in one with his favorite blanket and pillow.

Pook also enjoys digging around in dried rice and dried beans. He enjoys digging around in sand and now, after much work with him, in mud. 

A few days ago, I heard one of those noises that makes every parent take a deep breathe, count to 10, and then ask in a tentative voice, "What was that noise?"  Well, it turned out "that noise" was Pookie taking the huge container of unpopped popcorn and dumping it into one of the plastic totes. He then climbed in and buried his legs in it.

I noticed that Lowes has a 27gal tote on sale for $10 this week. Wonder how much rice, corn and popcorn kernals we could fit in it?? 

Also within the past week, we discovered another new type of occupational therapy for Pook. He's had quite a bit of therapy through the years to deal with his sensory issues. Certain textures he could not tolerate. There are still many he doesn't tolerate. And, although I'm not quite sure why he would ever need to tolerate textures that feel like lipstick or fingernail polish, we discovered that all it takes is a big sister and her friend to end up with these results...................

Of course, we discovered afterward that Pookie will NOT tolerate fingernail polish remover. Fortunately the eye shadow, lipstick and blush came off in the shower! 

We're looking forward to 2011 for Pookie. His biological father is being a fairly consistent part of his life now. His EEG was normal. His iron was low and he now takes a supplement for that. He has an upcoming appointment in March with a pediatric neuropsychiatrist and we predict this will help him tremendously. 2011 is going to be a good year for Pook. I'm so glad that each of you are a part of it!

An Aspie Idea!

"I don't want a red one. I don't want a red one. I don't want a red one."   (referring to a Hershey kiss wrapped in red)

"Why do you not want a red one?" 

"Cause red is for girls."

You see, several weeks ago Pookie heard someone say that the color pink is for girls. So, suddenly all colors must either be feminine or masculine character. The only color not thus defined is his favorite colors, white and blue. So, today, I got creative. I found this picture online: 

I then asked him......"What's this?"  

"A football guy!!"   (He adores any type of ball and loves sports)

"What color is he wearing?"

"Red?" (he seemed very very confused)

"So, red is??? Is it a girl color?"

He started shaking his head yes but after about 45 seconds started shaking his head no. He still seemed confused but after several seconds his face lit up, he looked at me, smiled and gave me a big hug. 

"Red is for everybody!" 

SUCCESS!!!

Doctors, Rides and Ice Skating

            Here lately it seems I’m behind on everything and blogging gets pushed to the last of my priorities. Yet, my ideas for blogs never leave my mind and throughout the day I have a thousand different things I want to put to paper.

            Life with Pookie has been increasingly chaotic lately. It seems each day we discover something that he can no longer tolerate, something he no longer can say, or something he no longer understands. It’s near impossible to figure out where to go from here. The majority of our daily interactions seem to be us trying to figure out what it is he needs. More and more each day we can’t understand his speech. In addition, he takes everything that is said very literal. Then, there is the fact that he can no longer understand certain concepts he previously grasped. I feel like I spend more time trying to figure out what he’s saying and how to say what I need him to hear, then anything else.

            His visit with his pediatric neurologist recently went well. Although I didn’t really get any answers, we did get scheduled for more intensive testing. The first step is an EEG with sedation scheduled for the 9^th of this month. Although the neurologist would have preferred to do a sleep deprived EEG, with Pookie's sleep disorder we weren't sure that he'd be able to fall asleep for the EEG itself. So, he'll be sedated instead. While he’s sedated, they will draw blood and test for various factors as well. The EEG will determine if he’s having seizure activity that is resulting in the various losses he’s experiencing. The other tests will look for various things such as vitamin deficiencies and whether other parts of his body are working properly. We’re also scheduled to take him to see a pediatric neuropsychiatrist. She will do intensive testing and develop very specific treatments to aide him. Of course, she’s one of the few in her field in this state and our appointment couldn’t be scheduled until April. We waited 6 months to get in to see the neurologist and now have to wait another 6 to see the pediatric neuropsychiatrist.

            Life isn’t bad though. I’m blessed to have such a loving child. He’s full of energy and fun. We’re blessed to have such wonderful support from various resources. Our church family is fabulous in understanding and being non-judgmental. There are some wonderful child care workers that care for Pook when we attend church which is a wonderful break for us and a very important social activity for him. Not to mention it’s much easier to grasp a message when you don’t have a squirming, rocking 4 year old on your lap.

            Our older two children attend Sibshops. Our local Sibshops recently received a grant from Speedway Children’s Charities. As a result, those who attend Sibshops and their family were invited to the awards ceremony which took place opening night at Carolina Christmas. Speedway Children’s Charities donated to more then 75 local charities that night. All the families associated with those various charities were allowed to participate in the various activities for free!

            Our night was unbelievable! Pookie wasn’t real happy to be around so many people he didn’t know at first and spent the first hour clinging to me. The fireworks was not something he wanted and he firmly expressed his desire to go home. I held out though and with his siblings help was able to eventually convince him to go look at the many Christmas trees that were on display. That led to his going to the elves workshop where Lowe’s had generously donated

various building activities for the children. Armed with nails and a hammer, he and his father built a wooden garage for him to house his blue Hotwheels in!

Pook’s older sister appeared and showed him a picture of her and Santa. Completely bewildered and confused, he followed us to see Santa. His concept of pretend and real almost short circuited him then and there on the spot. But, Santa was holding up this Lugnut stuffy

that had blue and white (his favorite colors) on it and a candy cane to boot. He dragged me up with him, told Santa he wanted a bike that says “vroom vroom” and made it absolutely clear that there was no way Santa was going to touch him AT ALL. His picture shows him standing a foot away with Mom by his side!

            Next we headed outside. There were tons of kiddie rides. His Dad and I took turns wandering through the rides with him. We should have known that Pook’s insistence on everything being completed fully and all things being where they go meant that he would have to ride every single ride there, but that didn’t really click with us until we were so exhausted our legs could barely move. Pook didn’t seem to have a favorite until we only had 3 rides left to go. He then entered this large inflatable obstacle course that had a huge slide at the end of it. He discovered that if he went out the back of it, he could run around, slip in behind the man attending the ride, and go back through it over and over again……….all while his parents frantically tried to find him in the huge inflatable. It took a lot of convincing to get him to move on. Once we reminded him that there were rides he had not ridden yet, he moved on.

            After the rides and the petting zoo, we went to find our older two children who were at the ice skating rink with friends. The rink required at least one parent to skate with all children under a certain age so I sat down and laced up some skates. I was worried about how I’d manage with my own health issues if any of the children got hurt. I was especially worried about Pook. Yet, the Evel Knievel in him saved the day. Pook got on the ice, smiled real big and said, “Hey, watch this” despite my repeating, “Wait on Mommy!” Pook took off across the ice like he’d spent his entire life on it! Who’d have thought? After we skated for a while (with me holding on to the wall most of the time), Pook wanted to race. Three quarters of the way across the rink he looks back over his shoulder, saw me close to him, kicked up on the front of his skates and RAN across the ice!! I spent the rest of the night assuring everyone that it really was his first time on the ice despite their thinking he’d been skating for years.

            We finished off the day getting a horse drawn carriage ride (a blue and white carriage…Pook’s favorite colors) around the racetrack to see the lights. Although we weren’t overly impressed with the lights, we were extremely impressed with getting to ride a horse drawn carriage around the Charlotte Motor Speedway racetrack! I never realized the incline those race cars sped across!

            Pook had such a wonderful time. Granted, he was out of sorts for a few days after but now anytime he sees something that reminds him of Carolina Christmas, he asks to go ice skating. Pook longs to be a fireman and loves to ice skate. Yep, that’s an odd combination but one that makes him uniquely Pookie!!

            I can’t imagine what our lives would be without all the support, love, and fun that Sibshops has brought into our lives. If your child has a sibling with special needs, you MUST get them into your local Sibshops program. I can’t stress how important it is for your children to have their own support group for living with a sib with special needs. It has totally changed, not only our children, but our entire family’s perspective.

            Pookie has brought so much into our lives. We are better people then we were before he came. Pook has taught us a compassion that I don’t think any of us truly had before. I can only relate it to the compassion that moved Jesus when he saw the crowds of hurting people. I look forward to all the things that Pook will continue to teach us and thank God for the blessing He has brought into our lives! 

To all Amazon Shoppers!!

(Personal note: Sibshops is a support group for children (Sibs) who have a sibling with special needs. It is a huge support to children and teaches the children on various levels including advocacy. Feel free to email me for more information)

Dear friend of Sibshops and the Sibling Support Project—

If you’re like me, you will start thinking about gifts for loved ones in the next few days. And, like me, you may prefer shopping online instead of heading out the mall.

If you are one of the millions who shop at Amazon, I have a favor to ask: Will you support the work of the Sibling Support Project by beginning your shopping by “entering” Amazon through the Sibling Support Project’s “Astore”?

You will get the same great deals you always get at Amazon, and Amazon will donate up to 6.5% of the purchase price to the Sibling Support Project!

Here’s the website for our Amazon Astore. Please add it to your favorites or bookmarks: 
http://astore.amazon.com/thesibsuppro-20
 You can shop for just about anything at our Astore.

Once you add something to your shopping cart from one of the below featured categories and proceed to checkout, you can then wander anywhere on Amazon. (And, if needed, you can yank any item out of your shopping cart prior to purchase.) Any eventual purchase made within 24 hours of entering the Astore will benefit the Sibling Support Project. 
 

• Books about sibs and families

• Books and materials for Sibshop providers

• Woodbine House's Top 25 Books

• Any book on Amazon

• All music on Amazon

• Toys & Games

• Apparel & Accessories

• Camera & Photo

• Computer & Video Games

• Electronics

• Gourmet Food

• Jewelry & Watches

• Home & Garden

• Kitchen & Housewares

• Magazine Subscriptions

• MP3 Downloads

• Software

• Sports & Outdoors

• Tools & Hardware
 


Thank you for your support! Here’s the link again:
http://astore.amazon.com/thesibsuppro-20
 


One last thing!  If you'd like to celebrate the holidays with a direct gift to the Sibling Support Project please click here.  Those who give at the $100+ level get a free copy of our newest book, Thicker than Water: Essays by adult siblings of people with disabilities!

Wishing you all the best,



Don Meyer

Director, Sibling Support Project

PS—In case you were wondering, we never know who buys what, so we’ll never know you bought grandpa a subscription to Playboy.
 


PSS—If you think this is a cool way to do good while doing the inevitable holiday shopping, will you please share this email with others?
 


Whoooo Hooooo

Sooooo, over the last several months, we've worked with Pook on being able to stay with "new" babysitters. These were all people he knew well and whose home we've been to several times. We started by having him stay with one of his siblings with him for a few hours. Then, we eased him into staying a few hours without his siblings. Next, he stayed with his siblings overnight. Then......last night....for the first time EVER.....Pook stayed the night without either of his siblings with him! Not only that, but the "babysitter" just called and told me he's been incredible the entire time. No problems whatsoever! He was so good in fact, that she took him to pick out his very own surprise! 

This may not sound like that big of a deal to some parents, but it is a HUGE MONUMENTAL SUCCESS for Pook! It shows us to never rely solely on what "statistics" or "specialists" say regarding children because in God all things are possible! 

Pook, Mommy and Daddy and Bubba and Sissy are soooooooo very very proud of you!! We love you!!! 

Thank you God for molding our son into the child that you will him to be!