The Autism Project

March 6, 2015
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Drew’s Story

Meet Drew. This sweet little one has a rare diagnosis that only a handful of other children have. Its is called 7q11.23 Duplication Syndrome. Quite simply Drew has a duplication of the williamson cromosone region. It is a developmental disorder affecting behaviour and cognition.It includes several medical issues, including cardiac problems, neurological functions and growth deficiencies. In Canada there are only eight other cases of this diagnosis.

When I first met Drew I wasn’t sure if he understood what I was saying. After clarifying with his mom Jane she told me he is able to understand. I started to talk to him and you could see the light in his eyes. He has such a gentle soul and you can feel it when you are with him. Drew uses an IPAD as a communication tool in class and his speech has also significantly progressed. He is speaking in 3-4 word sentences at home and uses word approximations. This is huge. He went from about 20 words to over a hundred at age 5.

This little guy holds a special place in my heart. He has the same kindergarten teacher as my little man. Drew goes in the mornings instead and he also works with the same teacher assistant as Carson does. He is in an inclusive program and they have truly embraced Drew with love and support.

Drew was diagnosed in 2013 at age 3.Jane remember that year as mainly a blur of tests, assessments and appointments. The little guy also has a heart murmur or aoerta aneurism in his heart.

Drew’s anxiety levels are quite high and it effects his ability to communicate significantly. As he became more comfortable with me and in my home I started to hear him speak…very quietly at first. As he relaxed I saw a different child. He came to life in front of me and it was quite lovely to watch. When I had seen him at school functions I had never heard him speak or saw his gorgeous smile. I loved that I got to see it and that he let me in. Mom tells me he is starting to enjoy taunting his older brother Cole at home and that they have a typical sibling relationship.

“Drew brings such warmth, love and joy that I cannot even describe in words”, Jane said. “He wakes up each morning with a hug and says my mama with a smile”.

I can tell from my interactions with his family that this little man has such a strong support system. Jane quit her job as a nurse so she could work with Drew and be his advocate. She credits her husband Jay as being her rock when she needs support along this journey.

“Be “that” parent in the room and advocate for your child,”she said. “Embrace the gifts you have been given, use your talents and skills wisely and stand up for those who do not have a voice for themselves”.

February 27, 2015
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Have Autism..will travel

We have always travelled with our five year old autistic son Carson. Its not easy but he really enjoys it as well. My husband and I love to travel and we wanted to pass this onto our children. I know not everyone with children with autism can travel and I am aware of how lucky we are to do so.
We just got home from Cuba a few weeks ago so I wanted to talk about our personal experience while it was still fresh in my mind.

Airports are not fun. I think any parent would agree with this, but it presents a whole load of extra challenges with an autistic child. Waiting in line to going through security to waiting to board are probably the most challenging parts of our vacations. I am always on edge waiting for someone to make a rude remark, but people normally surprise me.

Lines are not our friend. We flew with air transit and they have a kids club that allows you to check your luggage through the business class line. This helped a lot. We also pack a bag of new exciting toys for him to explore. He is huge into sketcher smelly markers so we had those as well as a magnetic game. We bring a sensory cushion for his seat on the plane as well and snacks like granola bars too.
He takes those smelly markers everywhere..

Besides the odd yelling outburst and the bolting to first class for a few minutes the plane ride was fairly smooth. He had the most difficulty right after arriving at the resort. Another line to check in and Carson was past his limit. He stripped down and took off for the pools. After catching him and convincing him to put swim trunks on I took him to the beach while my husband checked us in.

Both my boys love water so we spent a lot of our time at the beach or sitting by the pool. Carson found a sea sponge that he would throw down the beach for hours- great sensory experience for him. . Most of our challenges came with eating at the buffet for the first few days. When he was done eating he would get up and leave. One of us always had to be ready when he would decide to bolt. I didn’t really need that extra pasta anyway 🙂

We took a tour into Havana. It is about two hours from the resort where we were at. We were holidaying with a group of 11 so we booked a private bus to take us all in. Havana was beautiful , but hard for Carson. A lot of tight streets packed with people making it quite overwhelming. He was pretty disregulated and my husband and I spent the majority of the tour chasing him up and down the streets. It was worth it though and I would do it again in a heartbeat.

As soon as we developed a bit of a routine at the resort Carson started to regulate quite well. He was also really good at bedtime. The evening shows were too much- we tried a few times but he would just get up and tell us it was time to go back to the room.

Carson had one of the worst meltdowns he has had in years in the airport on the way home. We had to wait to pre board the plane. This is after two hours of sitting in a chair. They had everyone line up over 20 min early. This sent Carson in a screaming, crying fit where my husband had to hold him tight to prevent him from running away. I can’t imagine what it felt like to be Carson at that moment. Certainly all the prying eyes on us didn’t help. The woman working at the gate looked at me and asked what was wrong with him. I tried to explain, but in Cuba they don’t really understand the word Autism. After we got on that plane he calmed down and we had a pretty smooth ride home.

When you sit to talk with Carson about his trip his eyes light up. He tells you about the slide and his plane ride. He will talk about the buffet and his orange drink. As I look back on photos I won’t remember as much the challenge of travelling, but the beauty of those moments. We will continue to show him the world as long as we can.

November 29, 2014
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Frances’ Story

Frances is five year old and an absolute doll. She warmed up to me almost as soon as I arrived at her home. This sweet , fun and loving little girl is so full of life. I left her home smiling .Francis has down syndrome, but she wasn’t diagnosed right at birth.

I knew right away, ” Laura said. ” No doctor believed me. Everything was missed.” Laura did have testing done at the end of her first trimester and the tests came back negative. A false negative only happens about one percent of the time.

Growing up Frances has been a fairly healthy child. She walked sooner then most and she is incredibly active. Frances takes yoga, dancing and swimming lessons. She loves my little pony and books. Frances functions a lot like any other neural typical child.

” They are far more like typical children then people realize, ” Laura said.

At school Frances is very popular. It was evident to me why. She is a very gentle soul and with having boys personally it was so much fun to watch her put on wings and dance around her room. She is in kindergarten at Bessie Nichols school in the west end.

“She is our sweet little thing.” said Laura. ” We call her our little mamma .”

Frances does have a sensitivity to certain clothing textures and normally awakes frequently throughout the night.

There is alot of love in this house. There is absolutely no denying that. Look at the way her youngest sibling is holding her hand 🙂

October 17, 2014
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Parker’s Story

Parker is such a gentle, kind hearted little man. The entire time I spent with him he was smiling and just incredibly sweet. Parker was diagnosed with autism at 3 years of age. He is non- verbal. He has very few words but he communicates mostly by guiding you to what he needs.

Marie O’Neil ,Parkers mom, has such an amazing attitude . The O’Neil family lost a son at three years old and they are just grateful that Parker is happy and healthy.

” He is so happy,” Marie said. ” Always happy. The kids at school call him smiley Parker.” This little man attends Elbert Lacomb in St. Albert. Mom says he is the class clown.

The O’Neil family has a room that is used just for therapy at their home. It is filled with puzzles, swings, a ball pit , lots of light up toys and stacking toys. It is a place where Parker can go when he needs some quiet time or he is feeling overwhelmed. Marie has also found some vitamins which she gets shipped in from the US called “Smarty Pants”. They are all natural and have extra omegas. She says they make a huge difference on how Parker behaves and help to keep him regulated.

Looking back at my notes I didn’t take a lot from this session. Marie and I ended up mostly just chatting about what life is like with having an autistic child. I got so involved in our conversation I didn’t write all of it down. I can tell you this. Marie is very relaxed and takes everything as it comes. It was so evident the love that this family has for this little man.

“This is all we know,” Marie said.

Parker has a younger brother and mom is expecting another baby this spring.

July 25, 2014
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Jett’s Story

Meet Jett. This month we are going to get to know him a little better. This free spirited little man was diagnosed with autism at 2 1/2 years of age.

Jett loves the water. As soon as mom turned on the sprinkler he just started to play. You could see the excitement written all over his face. At three years of age he can float on his own and swim up to seven meters.

This little guy is non verbal. He communicates with mom and dad by pushing them in the direction of his want. They also use a “go talk” . This device can help Jett to communicate by giving him a series of pictures and allowing him to pick what he needs.

The Peterson family have been seeing a natural path for a while and are adapting a gluten and casing free diet. They have noticed quite a few positive changes in Jett’s behaviour since changing the way they eat. Jimmy explained to me that it was a great way to get the entire family eating better.

When asked what makes life more difficult the family mentioned the lack of awareness or education. Often when they are outside of home they get alot of stares.

“Its a hard job,”Kristy says, ” but its really rewarding”. A few organizations in Fort Saskatchewan have really helped Jett. Ferguson Pals group, Families First and kids uncomplicated have all been wonderful to his development.

“He is my boy, “Jimmy said, ” And I love him. ”

As I was leaving Jett settled in to watch his favorite show Backyardigans with his younger sister.

June 20, 2014
by jackmanj 2 Comments

The Leicht Family Story

Meet the Leicht Family. First I want to say that these family is incredibly close knit and supportive. I watched the older children help with the younger siblings without being asked. They made me feel incredibly welcome in their home. The Leicht’s have 6 kids: 3 of those children have special needs. Lets start with the youngest and move forward.

Meet Noah. He is 3.5 years old and has one of the best smiles I have ever seen. Noah was adopted from China in March 2012 at 18 months. He comes from a little village with under 100 people. Mom had a picture of the village that hung on the living room wall.

A bit of background on China. Healthcare in china is not free. Noah has a cleft lip and cleft palate. Many kids in China in a similar situations are abandoned because the parents have no means to support them.

Noah has had quite a few surgeries already to fix his lip. I didn’t find that it was something you first noticed. This little guy is very smart. He is well aware of what is going on around him. While I was there distracting mom he had his fair share of popsicles and cookies. There is definately some mischief going on in his sweet little eyes.

This is Maya and she is a miracle. She is 5 years old and such a tiny little thing. Maya stole my heart from the minute I saw here. She took my hand and we walked around the backyard. Maya weighs under 30 pounds. Noah is slightly bigger then her. She was adopted from China 6 months ago.

When Jessica first brought Maya home her parents were not sure she was going to make it.

“We thought she was dying,” Leicht said, ” We thought we were bringing her home to die.”

Maya is missing part of her frontal lobe in her brain. Initially it was thought that Maya had multiple brain tumours.

In the six months since she has been home Maya has made so much progress. She started to walk, talk and now she is running. I cuddled with her on the couch and she is the sweetest thing in the world.

I would like to introduce you to Micah. This pre teen was a little preoccupied with his night out at the Whitemud amusement park with adaptabilities . It was really sweet to see how truly excited he was about it.

Micah has global developmental dyspraxia. He struggles with communication and is non verbal. Looking at Micah you see a true person. He is kind and doesn’t worry about what others think. Mom and dad believe he will work in the service industry because he truly enjoys finds joy in helping other people .

Micah is 12 years old. He was blind until the age of one and legally blind until three years old. Today his vision is normal. Micah’s severe fine motor and gross motor delays make it hard for him to communicate.

This young man loves to ride horses and enjoys his music. Dad also talked about how much he loves riding the LRT.He has a great sense of humour and even understands complex humour.

When I first thought of the idea of three kids with disabilities I thought it sounded overwhelming. The Leicht family are incredibly grounded and I was able to learn a lot through this interview. I left feeling loved by the family and truly appreciated. We need to teach that every child with a special need has a voice. Jessica really helped me to see that.

We truly need to look beyond the label. I would like to end todays post with Jessica’s favourite quote..

“The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse. ” Helen Keller

June 13, 2014
by jackmanj 1 Comment

Carson’s story

Carson has autism and ADHD. It is a part of him that brings challenges, but there is so much life and love in our little man. We received the diagnosis this spring shortly after his 5th Birthday. Carson has always been a very active little man. At 18 months he was climbing playground equipment trying to catch up with his older brother.

Carson can speak in sentences. He doesn’t have the vocabulary that he should have for his age, but he has made so much progress over the last three years.

I don’t know nearly as much as I should about Autism. It is still something fairly new to us. It isn’t what I expected it to be. My son makes eye contact and he gives hugs. Anyone who meets him will tell you how much of a character he is. Carson loves to make people laugh.

He struggles with sitting still and has always keeps both my husband and I on our toes. When Carson hit preschool at 3.5 we really started to notice some of his struggles. He couldn’t sit in circle time and would often push other children when he was overwhelmed.

Carson loves deep pressure and seeks it . We have a mini trampoline in our home , and an exercise ball that he can use at anytime to help regulate himself. We also have a bouncy castle for the summer time. Carson and my older son Coen have an amazing relationship. They are boys so there is definitely a lot of wrestling going on, but Carson adores his older brother. He will make a point of seeking Coen out to play. He even taught himself how to play Mario Kart on the Wii so he could hang out with his brother.

Carson excels at anything physical. He is in gymnastics and swimming and he is fearless.

We love our little guy and I can’t imagine life any other way. This is how autism has affected us. I am sure I will add in other personal posts from time to time. Some days are absolutely amazing and some are incredibly hard. Its kind of like riding a roller coaster . Although I strongly believe that nothing good in life is supposed to be easy.