Jake's a Celebrity!

So he's not exactly a celebrity, but he is a tv star (in our minds anyway). Today at school, Jake participated in a Wordapalooza at his school, where various authors held workshops with the kids. Jake got his mug on the camera and the opportunity to show off his rhyming skills.

Click on the link below 'Rhymers' and watch the newsclip for yourself. He's the gorgeous poet in the navy blue.

Rhymers Tue, Jan 27 - One southwest Calgary school spent the day getting its kids in touch with their “inner author.”

6 is no longer the magic number

Our boys turned six years old on Wednesday.

Will and his dad. Shirtless as always.

We held a birthday party for them last Sunday. All of their school 'chums' (as my Pop used to say) came over to our place to tear the house apart, then we headed to the bowling alley for some Cosmic Bowling. The overhead lights are all turned down low and the neon lights and laser lights flash all around while loud rock music blares from the speakers. Any other time this would have been a blast, but not so much for Will. Sensory overload. He missed out on the fun and spent the rest of the party in the van with Jonathan. As soon as Will left, Owen lit it up and had a great time. With some assistance, he would go to pick his own ball (always picked the green one), walk to the line, set the ball down, count to three then said "goooo" while he gave it a push. Very proud of himself. Owen and Ella, Jake and Joshua, Zack, Maddie and Jack, Eric and Rowan all had a great time. It was great to see all of the kids do so well.

6 year old Owen with Courtney

It has been an emotional week. I'm a typical mom, overthinking and probably being dramatic. But six has been a magic number in my mind for the last four years. The boys were diagnosed at 2 years and 4 months. At the time, we were in Ontario thinking that we would be on the waitlist for therapy for a few years, but that maybe we would get some service before they would 'age out' at age six. At the time, children were being discharged from the provincially funded therapy program when the child turned six. This most likely was the magic age because scientific evidence for ABA is strongest for the youngest, ages 2 to 5. You'll often hear other parents of kids with autism who say that during these years, we hear the ticking time bomb as we approach that magic age.

The truth is, that somewhere along the countdown, my belief in what autism is and what potential my boys have, has completely changed. Age six no longer holds that power for me now that I believe that there is more out there than just ABA. ABA has been absolutely critical in bringing my boys to where they are today. They have fundamental skills that I don't think they would have ever had, had it not been for the hours of intensive therapy that they have worked through.

But ABA did not take Will off of Ritalin. It did not dramatically change Will's sleeping habits from spending hours awake in the middle of the night every single night to sleeping through every single night for the past 5 months. It did not bring the colour back to Owen's cheeks and add weight to his bones and bring a new light into his eyes. It did not sharpen his focus and attention span. The changes we have made to both Owen and Will's diet, in addition to the supplementation and other biomed interventions we have undertaken are the root of these accomplishments. There is no doubt in my mind. The details of these interventions are meant for a more detailed post on another day. ABA AND these interventions go hand in hand in marching my boys on a path to a more independent life. All of our most dramatic achievements and successes have taken place in the past five months. Owen and Will's sixth birthday will not change that path. In fact, it has offered me an opportunity to reflect on where we have come from and because of all of our recent successes, it makes me hopeful and excited for what is to come. With ABA AND our efforts at improving the boys' health, I know that we will have even more successes to brag about on their 7th birthday. But there is still that tiny part of me that feels sad that we have hit this age. Because I would be lying if I denied that way back in the beginning of our autism experience, I didn't dream and pray that my boys would be two of the ABA recovery success stories. But there is no time or room for wasted negative thoughts. Instead, I'll try to stay focused and positive and will do my best to post of each success for all of you to see and cheer along with us.

Where Are the Parents? By Sue Stuyvesant

This was posted on an autism group that I am a part of and I thought that it was a great tribute to all of the parents out there of special needs children. It's also a reminder of how 'someone's always got it tougher' than we do.

"I am mom to Michelle, 9 years old, micro cephalic, athetoid/spastic CP, Cortical Visual Impairment, Seizure Disorder - and CUTE! Earlier this week a question was asked by some nit wit school official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me, was "Where are the Parents?". Here, the question gets answered.)

Where are the parents?

They are on the phone talking to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.

They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15-year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew , or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters, and switching oxygen tanks.

Where are the parents?

They are sitting, bleary-eyed and exhausted, in hospital emergency rooms, waiting for test results to come back and wondering: Is this the time when my child doesn't pull through? They are sitting patiently, in hospital rooms, as their child recovers from yet another surgery to lengthen hamstrings or straighten backs, or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care, and the state agencies that are designed to help are suffering cutbacks of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometimes 3 jobs in order to keep up with the extra expenses.

And, sometimes, they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Sincerely,


Michelle Barron-Pieper, MS
Rescue Angel

One of my biggest challenges these days, is finding ways to hide supplements and medications in the boys' food. Owen only drinks his one rice milk (+meal supplement) and Will only drinks water, so there goes any chance of hiding anything in liquids. Relying on hiding meds in food is scary, because if the child simply doesn't feel like eating, you've lost your method. I came across this article and thought I would share it with anyone who might need some new ideas of their own.

Pill Swallowing Made Easy

by the Staff of the Child Study Center

Introduction

Many children have difficulty in swallowing pills. They may be unable to perform the necessary reflex, they may be feeling too sick, or they may have unpleasant associations with pills and illness. Many desperate parents have coaxed, wheedled, cajoled and bribed their children to take their pills. They've mashed pills in apple sauce or bananas, diluted them in soda, and tried other creative ways to disguise them. But sometimes pill-taking becomes a battleground and compromises the child's health. Parents, however, can help children learn to swallow pills automatically. The secret lies in patience and in a system that teaches the skill by using gradual steps with candy "pills" of different sizes.

Supplies: Multi-colored round candy balls called mixed decors found in the cake-decorating section of a supermarket; tic-tacs

1. Be sure your child is capable of an automatic swallowing reflex. To assess this, make sure that the child is able to swallow small amounts of water without difficulty. Have the child take a mouthful of water (not so much that his cheeks are full) and attempt to swallow it without having any dribble out.
   
   
2. If there are no problems with swallowing water, have the child swallow one of the multi-colored round candy ball "pills." Some children may not need to start with the smallest size. The child should begin with the appropriate size candy "pill" that he can comfortably swallow. Starting with a bigger size enables the child to move up more quickly without wasting water swallowing nothing. Tell the child to place one ball as far back on her tongue as possible, take a drink of water from a cup (not a fountain) and swallow the "pill." The child can have as many practice trials as she needs. Most children find swallowing these balls surprisingly easy, so the first attempt is almost always a positive one. Praise the child for both effort and success.
   
   
3. After five consecutive successful attempts, the child may move on to the next size candy "pill." The candy pill levels are:
   
   
   1. the multi-colored mixed decors
      
   2. color shots
      
   3. small silver decors
      
   4. snowflakes
      
   5. larger silver decors
      
   6. 1/2 of a cinnamon or fruit décor
      
   7. whole cinnamon or fruit décor, and
      
   8. tic-tacs
   Practice trials should be given at each level.
4. If the child is unable to swallow a candy "pill" five times in a row, continue
   the procedure using the same size candy pill (even if the child has swallowed the candy four times in a row and then failed on the fifth try). Sessions generally last 10 to 15 minutes. However, it's not advisable to prolong the sessions so that the procedure becomes aversive to the child. Consider the following factors:
   
   
   • the amount of candy the child has ingested
     
   • the amount of water the child has had to drink
     
   • the extent to which the procedure appears to be anxiety-provoking for the child.
5. If the child moves to another size candy pill and is not successful, return to the previous size pill before ending the session, so that the session ends with success.
   
   
6. In subsequent sessions always begin with the first size candy pill used at the first session. If the child swallows it easily on the first attempt, progress directly to the next size, and so on. If the child is unable to swallow the pill, move to the size below that. Give practice trials, using a criteria of 5 successes before trying the size that the child was unable to swallow again. Some children move through all the sizes easily in one session. Others may have more trouble and move up slowly over 2 to 6 sessions.
   
   
7. Progress from the candy pills to actual medication. It is rare that a child progresses through the shaping program through the tic-tac level and then has difficulty in swallowing the medication.
   

I also found this product, which I plan to order asap:

Oralflo Pill Swallowing Cup:

I hope these ideas work!

Where did the time go?

Six years old. How did that happen? Happy birthday to our Will and Owen. We love you.

Jaimie's blooming flowers

We had a special visitor last week.

When we first started out in the ABA world, we were so lost. Getting the diagnosis for the boys was so overwhelming. We were handed Catherine Maurice's book "Let Me Hear Your Voice" and the phone number for the IBI waiting list. When we realized that there was no chance in hell that we would ever get service, we started investigating private ABA/IBI providers. The first agency the boys were with came with a hefty price tag and a lot of confusion. But we met Jaimie. When Jaimie left that agency to move on to another, we followed her. And when we started looking into a move to Calgary, Jaimie was sooo helpful in providing any encouragement and information that she could about her hometown.

It's been two and half years since the boys had seen her. A lot has changed since they were last together- the boys have grown up and learned a whack of new skills and Jaimie is a new Mama for the second time, to baby Oliver. Although a lot of time has passed, we were quickly reminded of why we loved her so much. She really cared about Owen and Will and the fact that we are still in close contact is a testament to her connection to the kids.


2006:


2009:

Now with any hope, Jaimie might someday move her family back to Calgary and we can see more of her. It's a nice feeling to have someone in your life who saw the potential in our boys, right from the beginning.

We used this quote for a recent gift for one of our therapists:

When things are tough,
just remember,
every flower that ever bloomed
had to go through a whole lot of dirt to get there!

We are grateful to all of our therapists, like Jaimie, who recognized that our boys are flowers.

Divas pretending to hate the paparazzi

It feels like yesterday when Jake's favourite music was anything sung on Sesame Street. But with the school bus came a bus driver whose method of keeping the kids under control is to crank up the pop 40 tunes. Now I've got a seven year old who knows all the words to such songs as Britney's "Womanizer" or Katy Perry's "I Kissed a Girl".

Lucky for Jake, Devon has come into our lives and shares many of his interests. Call it what you want (immaturity or poor taste??) but it's made Jake a happier kid.

This video cracks me up. The goofballs just sat there singing with smiles on their faces, waiting for their photo to be taken.

Willy's Sing-Song

I love my boys so much. And after waiting nearly six years to hear Will speak, you can understand why his cute factor has gone up so drastically in my book. Is he not adorable??



So you know, this is not Will's best work. We can't figure out if it's laziness or his own creation of pig latin, but most often he chooses to not enunciate each word properly.

I especially love our bedtime routine. Every night I do the same thing with Will and lately, big brother Jake has joined us. We sing,

Night Night
Sleep Tight
Don't let the bedbugs bite
if they do, squeeze them tight
they won't bite tomorrow night
(Will sings along - word for word, if he's in the mood).

This is followed by:

I love you
You love me
We're a happy family
With a great big hug (insert hug here)
and a kiss from me to you (insert kiss)
Won't you say you love me too
- I love you Will
- I love you Ma



What is especially precious to me is that we can now share inside jokes with Will. I surprised him once with the word 'tickle' to substitute for the word 'kiss'. Now we sneak in tickle opportunities and he sneaks the word in too, while he giggles waiting for my reaction.



I love it!

Inspirational Tribute courtesy of the LFC Supporters

Alright. I'm just going to jump right back into it without excuses.

So I have just spent the afternoon trying to make a cd of inspirational songs for a friend. Everyone needs a little pick me up on a bad day and for some of us, there are many. Maybe not bad days, but days where you want to pull your hair out, scream at the sky or crawl up under the covers and never see light. Anyways.. as I was trying to come up with a list of songs, I came across a song that made me laugh out loud. Not because it was funny, but because it is so ironic. Ironic because this is THE LAST song I would want to give my husband credit for. Because there is nothing that makes me want to tear my hair out more, than hearing this in the background:



So although I myself am not a Liverpool Football Club supporter and nor do I support Jonathan's supporting it either.. I love this song. Because truly, there is no better tribute song that I would love to have for my three boys and my fellow moms who are in the same journey that I am:

You'll Never Walk Alone

When you walk through a storm hold your head up high
And don't be afraid of the dark.
At the end of a storm is a golden sky
And the sweet silver song of a lark.
Walk on through the wind,
Walk on through the rain,
Tho' your dreams be tossed and blown.
Walk on, walk on with hope in your heart
And you'll never walk alone,
You'll never, ever walk alone.

Walk on, walk on with hope in your heart
And you'll never walk alone,
You'll never, ever walk alone.