Autism Series: The Introduction

Autism… For the last 8 years I’ve called it, The Other A-word. People keep debating, is it really an epidemic or are we just overdiagnosing. The numbers were 1 in 150 children back in 2005, each year those numbers get worse. The numbers are fixed some people say. But for a parents who walks out of a doctors office with that diagnosis for with that diagnosis… the one is to many.

Be sure to watch the video above. I did write a lot of the content in this post, however for topics like this, sometimes a raw unedited conversation provides more insight on the topic.

One thing parents have to really remember is to take care of themselves. Just like the stewardess tells you on the safety speech when you are on an airplane, put the mask on yourself first, then your child. If you are not eating properly, sleeping, or taking care of yourself, how can you care for your child. You will start forgetting important appointments, run out of patience, or lose the will to keep fighting for your child.

Ask for help! Couples, support each other. If one parent is burning out, step in and give them a breather.  If you don’t know what to do to help the other parent, ASK!

Once you have yourself together, its time to advocate for your child. Don’t let your child fall off the map. Call doctors offices and make sure referrals have been made. If you are on waiting list, call periodically and see where you are on those list.

When my oldest was little he was on a speech therapy list. I was told it was a 12-14 months waitlists. So I waited 14 months, no letter. So I called. Turns out they had my son on the wrong list!! Someone had forgotten to check a box on his referral and he was on the 2-3 year list. They honored our referral date and we had a therapist a few weeks later, however we could have had one sooner if I had called periodically to check in. The error would have been found sooner. But image if I hadn’t followed up at all? My son would have ages off the list. So parents, call and get updates!

So please do check out my video, I go into a lot more detail. This subject is near and dear to my heart, and I hope it shows.

 

 

Prepping for the NACD

NACD Logo-Letters OnlyWell things are about to start getting interesting around here. This week the boys are having their evaluation with the NACD- National Association For Child Development via Skype.

The NACD is run by Glenn Doman’s nephew Bob Doman. They combine over 3000 methods of therapy to create the perfect program for your child.

I have looked at 2 other programs:

The Family Hope Center and The Institutes for the Achievement of Human Potential(IAHP). Both of them seemed awesome.

However the IAHP seemed a little to strict. I am not able to quit my job and do programs 10 hours a day. Also I am using some alternative treatments that are working well for my boys like NAET(Nambudripad’s Allergy Elimination Technique)

The Family Hope Centre seems very good too. I have watched some of there video seminars and have been very impressed. The one thing stopping me is the travel cost. The cost of paying for passports to fly into the states, plane tickets for 2 adults and 2 kids, accommodations, dining out while there, and missing nearly a week of work is just not possible for us right now.

I have been saving to do either the Family Hope Centre or the IAHP, but could never pull the trigger. Then I discovered the NACD. All assessment can be done over Skype, and if we want to go down the Minneapolis for an in person evaluation, we can hope in the motor home and be there in 10 hours. We could easily book a Friday appt, book Friday off of work and make it there and be back before work on Monday.

So this is a new adventure for my family. I’m so excited, as it seems so promising.

Stay tuned for more updates!!

Does NAET help ADHD? Autism?

So last month I wrote about how Wes was doing with NAET. You can read about it HERE, but basically to summarize, it has worked WONDERS for him when it comes to foods that were once an allergic trigger to him. Foods like gluten and dairy. We were also able to reset his body when it came to damages caused by heavy metals from the vaccines he had as a young baby. 

 
He is more focused at school. Able to participate in treat days at school and birthday parties without having to bring a gluten free/dairy free alternative. He is now able to participate in activities at the Y without a one on one adult support. He is not really utilizing his level 2 support worker at school either. Also if things keep going this way, next year he wouldn’t even need one. 
 
But the biggest difference I have noticed with NAET is in my 2 year old. He didn’t have food allergies that we were aware of. However he was diagnosed with Autism and we were also told he most likely has ADHD, but will not get the ADHD label till just before he starts school.
 
Three and a half months into NAET he is a different child. I finally feel like I’m caring for a typical 2 year old. Not the tasmanian devil in a 2 year old’s body. 
 
We really noticed a difference about 2 months in. Once the changes started happening, it was like a snowball effect. And literally we would have a treatment done and the next day he would start doing something new. Or stop doing something old. 
 
We went from a child that was only safe in a playpen, to us packing up and putting the playpen away.
 
A child who would not make eye contact, to a child who is making eye contact way more.
 
To a child who didn’t care whether someone other then mom was around. To starting to show interest in extended family members. 
 
From a child who just runs back and forth all day, to a child who will sit down and play with toys or watch a show. 
 
I feel like I’m getting my little boy back. And I know this would not have happened without NAET.
P.S If your interested in reading more about this, check out the book,Say Good-Bye to Allergy-Related Autism NAET

Dr Phil Show Mom Attempts to Take the Life of Her and Her Daughter. Is She a Monster or a Victim?

I got a message last night from my friend, “Did you watch Dr Phil today?” It was 11pm when I saw the message and things were very busy all evening in our house, so I just shot her a message back saying “No, but I have it PVR’d.”

Then I got a call from her this morning. She told me I had to watch it, because it was about a woman who tried to commit murder/suicide. She couldn’t handle her autistic child’s violent attacks on her younger daughter, she felt had no resources available, so she tried to take her daughters life and her own. 

She also told me, “I get it. I would ever kill my autistic daughter, but I get the extreme hopelessness when your autistic child is beating the crap out of your younger child.”

So when nap time came around today, I watched it and I had so many emotions running through me. I knew as soon as my boys were down for the night, I would be watching part 2. 

After watching both shows I felt for this mother who felt this was her only answer. I don’t believe it was the right answer, nor could I image myself ever doing the same to my child. However I don’t lay the blame in her lap, or her husbands. I blame the medical system and the government. When parenting leaves you with brain injuries and Post Traumatic Stress Disorder there is something terribly wrong. 

Parents are left to the wolves on long waitlists. They don’t have the skills to deal with these situations or the resources. Anything worth doing with children with Autism either has a REALLY long waitlists that you can age off, or a huge price tag. Insurance companies cover some cost, but just as it starts working, you hit your max for the year. Which seems to be what happened to this family on Dr Phil. 

When I found out the waitlist that my son would be placed on I remember speaking to Wes’s service worker supervisor. I told her, mark my words, some poor family with no resources will snap under pressure and a child will be hurt. Little did I know, this had already happened. 

I have been blessed to have found alternative therapies that are working amazing for my boys. Early Learning, naturopathic/homeopathic therapies, diet changes, NAET, ABA therapy, just to name a few. But I should also mention, this puts saving for our retirement, family trips, our children’s educations, etc on the back burner. These therapies help and they are worth it, but the financial burden on the family is extreme. 

However, I have hope. My boys are amazing children. I know in my heart all our efforts are helping. I know in my heart my boys will be awesome members of society. I know they will have careers, and wonderful lives. I pray everyday they will find love and have families of their own. 

I have hope. I don’t care if the debt keeps adding up. I will find the money to keep fighting. 

After watching these two episodes, I hope Dr Phil can help everyone involved. I hope he can raise awareness. I hope we can start finding answers. I also hope that the people in power can look into these alternative resources and treatments. They have been life altering for my family. I wish they were available to everyone. 

So my opinion, Kelli(the mother in this story) is as much of a victim of autism as her daughter Issy. So are Issy’s siblings and father. Lets hope though that through this and with the help Dr. Phil offers, they can be no longer victims, but survivors.

What does a parent do while they are wait for ABA services?

What does a parent do while they are wait for ABA services?

Here in our part of Canada ABA services are covered by Manitoba Health. While this is awesome because most US residents have to pay thousands, if not hundreds of thousands a year.

This is a wonderful blessing! However, the only downside is the long, long waiting list. Right now people are looking at 18 months to 2 years. IF you child does not age off the list at 5 years old. This is very stressful for parents, and it wasn’t always that way. Back in August of 2008, I signed up then 3 year old boy up for the program and his first visit with his ABA Senior tutor happened in January of 2009. 5 months. That was it! Totally doable for anxious parents. However this time around I signed my youngest up for services in February 2014, and we will be LUCKY to have our first visit in September 2015. 19 months. More likely January 2016, 23 months. Terrifying for an anxious parent. 

Sad part is ABA is most effective if started EARLY. Hence the title, Early Intervention. So parents CANNOT wait for services. Since the government doesn’t seem to understand the seriousness of this, parents have to step up. This can be so scary for parents who have not been through this before. So I decided I HAVE to blog what we do in our home. Now while this might not apply to your situation, I’m hoping the resources I mention might have things that can help you. 
The BIG Book of ABA Programs :I call this book the ABA bible. It has a program written for each step of the ABBLS-R.
“The BIG Book Of ABA Programs After the ABLLS®-R has been completed, educators and parents are often left wondering how to transform the results into empirical IEP goals and quality ABA training programs. With the BIG Book of ABA Programs those concerns are a thing of the past. Each detailed program can be used with dozens of different children. Each program contains specific instructions for data recording and implementation for baseline and ABA teaching. Each program is customizable for different children and their unique settings, teachers, reinforcers, and steps pertaining to each program. Benefits Why pay a behavior analyst to write your programs? Why spend hours writing your own? The BIG Book of ABA Programs contains more than 500 precisely written, photocopyable, ABA program protocols for every teachable step in the ABLLS®-R. Each of the more than 500 photocopyable teaching programs contains: A well-written IEP and program objective A complete baseline implementation”

This book will help you get ideas of things you can do now to help your child while you wait for ABA services to start. 

I highly suggest buying an 

Assessment Kit for ABLLS®-R, with Manual from Different Roads. 

 
I know it looks pricey. I will admit to ship it to me, but the end my bill was just shy of $1300. But that being said, during your child’s three years in the Preschool Program, and three years School Age, this investment will be worth it. 

I wish I had know about it when Wes went through the program. 

I dreaded every clinic meeting because I knew I would be given a list of items, pictures, etc to find. And that program could not be started until I did so. So I spent thousands of dollars on dollar store items, ink for my printer, photo printing, things from the teachers store. Not to mention hours of time on the computer finding said pictures, and gas driving from store to store. I can’t image how much easier it would have been to say, “Lets the bins and see what we have.” Then been able to start the program that day! Instead of waiting till the next time the Senior tutor or Consultant came. 

I was talking to another ABA mom a few days ago. When I told her about this kit that I had bought for Z, she told me she wished she had know there was something like this available for parents, she would have likely made the investment too.

And lets say this is not an option for you to purchase outright, right this second. I highly suggest figuring out how many months you have on the waitlist, subtracting a few months in case you get in early, and figuring out how much money you have to put away each month to buy this kit. But if you can swing getting it ASAP, you will have more tools in your pocket to start working with your child NOW.

You might be thinking, there is no way I can run a 35 hour program on my own. I don’t have the money for that kit. I work full time. Remember, every moment you work with your child it will pay off. Making time during meal times, before bed, in the car to daycare, every moment counts. So don’t give up because you can’t put in 35 hours a week. Yes 35 hours is the best. But 5 hours is better the zero hours.   

Activity Ideas:
– Verbally label everything.
– Do house tours labeling what each item is. 
– Make large clear written labels for things around the home. 
– Count everything. 
– Practice dressing skills. 
– Playing with Shape Sorters. 
– Puzzles

Flipping through The Big Book of ABA Programs will give you ideas on what skills your child might need to work on. 

Another thing worth suggesting is to start following through with everything. This is one of the hardest things for me to adjust to when my oldest was in ABA. Sometimes after a hard busy day, its just easier to give in. If you start following through with everything now, this is one last adjustment you and your child will have to make. 

Waiting for services is so frustrating. Trust me, I know, I’m there. But don’t let your child rot waiting for services. Everything little thing you can do with them now, is one less thing your ABA term will have to do. Leaving them able to focus on the really tough stuff.

Also check out BrillKids programs. They are such a power tool as well. They work on labeling and reading at the same time.

Good Luck on your journey!

What resources did you find helpful while you waited for services?

The Institutes for the Achievement of Human Potential

I have been toying with the idea of going to Philly and taking the course at the institute, “What to do about your Brain Injured Child”. I feel I could get so much information by going there, however the cost a lot for us. Just the course alone is expensive, then you add hotel and food expenses. Plus the loss of income. I wish I knew how much this would or would not benefit us so I can make an informed decision. I talked to the lady at registration, and she was very helpful. And I figure a lot of the information could be used for future children (well or not well, praying for well of course).And I mean if they could help Wesley even more, I mean wow…

Anyhow a bunch of people on the Brillkids forum are getting together and creating our own digital EK bits cards. The cost alone on real flashcards is outrageous. However if you already own the program Little Reader, and everyone chips in and creates a couple of files, the possibilities are endless. This is very exciting for us.
So I’ve also been creating some Doman style flashcards that I’m placing in plastic page protectors and putting into duotangs. I’m hoping to start adding these to Wesley’s routine, along with Sidney Ledson’s phonic method. And I mean I’m also saving myself some time, because we plan on having another child in a year or so. This way I will have all these materials ready to go. I can also use them with my daycare babies.
Speaking of daycare babies. My little guys are loving the EK bits I have put over the change table. I lay them back and while I change them I tell them, “We are going to look at our flashcards right after I’m done changing you!!” Once we are done they put out their pointer finger and we point and say the name of exact flashcard. I see their eyes following along and their mouths smiling. One little boy cries when we are done, because he is so mad we can’t do more lol.
I plan on setting up stations around the house to do more flashcards, but for now we only do when we are changing and at snacks we do Little Reader. I’m hoping to get Little Math soon, I’m just waiting for those coupons Brillkids said would be coming out before the end of the year.
MonkiSee "All About Shapes" DVD Volume 3MonkiSee "All About Colors" DVD Volume 2MonkiSee "Baby's First Words" DVD Vol 1I also just started using MonkiSee MonkiDo by Intellectual Baby. It is an amazing product for your little ones. I have a giveaway going on Krista from Intellectual Baby has generously offered to give one of my readers the Monki See Monki Do 3 DVD set. This is an amazing chance and I know the winner will just love this product. If you want to win go HERE before August 10th,2010 and sign up!

The joy of playdough warms a mothers heart

Well Thursday my hubby made me a yummy treat as an appitizer, mussels. This was the first time I ever had them, so I thought nothing of it. As I was clearing the plates, my throat started to swell. I rushed to the medicine cupboards and took a Benydrel while I could still get it down. It helped shortly after. I made a note to myself to call the doctor in the morning. Well of could the meds knocked me on my butt so I went to bed. The next morning I started washing the dishes and had the same reaction. I looked at what I was washing and realized it was the pan we cooked the mussels in. So I took the allergy meds again and called the nurses health number. She told me it was my body warning me that I’m severely allergic and to go into see my doctor as soon as possible. I called my allergist and they are taking me in on August 3rd, because we need to have the allergy meds out of my system before they can test me. All I can say is this is so scary! I never had a reaction like this to crab or lobster.
Anyhow my handsome son asked me last night to take a picture of playing with his playdough. So I did.

Your proably wondering why this is a big deal. Well when Wes was younger he had texture issues, and use to stem by playing with light switches and such. So we use to put playdough on the light switches to prevent him from playing with them. But now he is a few years later, playing with playdough on his own will, not effected at all. I’m just amazing everyday and thank God my son is getting better everyday. Playdough might now seem like a big deal for some people, but for parents of a child with autism, you know how major this is.
Have a wonderful day!
Dont forget to check out my current giveaways

A Blog with Substance Award

WOW! I given this award by JoyFul Learner and Olive and Pickles

The Rules:

1. Thank the blogger who awarded it to you. Thank-you Joyful Learner!! and Olives and Pickles!!!

2. Sum up your blogging philosophy, motivation, and experience using five (5) words.

Autism will not defeat us!

3. Pass it on to 10 other blogs which you feel have real substance.
I don’t think I can limit it to 10 blogs. Everyone on my list has substance and really is outstanding. And because I’m swamped this week with preparing for our first family reunion in 18+ years I’m going to cheat a little. Hope thats ok.

Welcome to the World of a Autism Diagnosis.

welcome to the world of autism

An autism diagnosis was not a planned part of my motherhood story.

Since before my son was born I wanted to teach him. I know how smart little children are and how much they can learn if parents just take the time. However things didn’t go so smoothly for us.

No matter how hard I tried, it seemed like I could not teach him. He was a late crawler, a late walker, a very late talker(were still working on this) and he was hard to control. I couldn’t reason with him, not even a little. Times he just plain ignored me. However he was very smart, there was no doubt. He needed to know how everything worked. Thing is it was on his terms, he just would not allow me to teach him.

He did OK in the infant program at his daycare. He bonded with his caregiver. But when he was moved to the toddler room he did not adjust so well.

Every morning, involved him crying in the parking lot before we even got out of the car. The staff was little help in the new room. In order to leave I had  to peel my son off myself and leave him there crying. The caregivers had just accepted this was how Wes was, and did little to comfort him.

Because of his allergies he could not sit at the group table instead he ate his lunch alone in a corner in a highchair. As a young single mom, who had never attended daycare myself, I had no idea this was not how it was suppose to be.

At the time we were trying to get him into speech therapy and had to go through the Children’s Development Clinic. I had to fill out countless forms, and I dropped a packet that the daycare was required to complete. When I got that completed form I sat in the daycare parking lot that night and cried.

The comments and statements that the caregivers wrote crushed my very soul.

It read comments like “Wesley spends most of his time sitting in a corner with a toy staring into space. If another child takes the toy from him he does not get upset just begins wandering around the room” or “Wesley shows no interest in spending time with his caregiver, when shown books he refuses to sit” They also talked about how he was unable to do puzzles. This was odd to me because he did puzzles at home all the time. How he seemed sad all the time, Wesley had always been a happy kid, until he started the toddler program.

After I read this report I was done. One month in this room was long enough. Why would they allow him to sit alone and not engage him, even if he doesn’t respond right away, try again! These are suppose to be train Early Childhood Educators, just because he didn’t fit their perfect cookie cutter child ideals he was being left in the dust. I could see he was being ignored because all the other children could talk and Wesley was never one to demand attention. So he was left to rot.

I called around and put him on a few waiting list for other daycare centres. I expected it to take months as good childcare is difficult to find in Winnipeg. However only a week or two later I got a call at work from a daycare in our local deaf center. They had a spot available for Wesley to start the next Monday.

I went into panic mode! I needed to give the other center 2 weeks notice or I would have to pay for that spot and this new one. As a single mom on a tight budget I couldn’t make that happen and still pay the rent. Not on such short notice. Plus I wanted to visit the centre, talk to the workers and make sure this was actually better for Wesley. Because they required a yes or no answer I had to turn them down. My heart just sunk as I sat back down in the chair in the lunchroom at work and fought back tears.

But God must have been watching down on me, a few minutes later they called back. They decided that because Wesley(being non verbal at the time) could benefit more than the other children on their wait list they would hold the spot for the two week period as long as I agreed to come down the next morning check out the center and give a firm answer. My heart just sung with joy! A daycare actually wanted my son because he was nonverbal, and they were willing to work with me.

The centre was everything I dreamed, it was slightly Montessori. Children who were not potty trained were cloth diapered, and they used a emerging curriculum. Children learned using things they were interested in. Plus they signed, and not baby sign, real ASL. What more could a mother ask for a great environment and the chance to learn a second language. I had been trying to teach my son ASL and it was starting to come along.

Wesley still cried when I left, but he was included into the group activities. They included him at lunch. They exposed him to more and more signs. He was understanding the deaf caregivers.

The children included him, they just assumed he was deaf and that’s why he didn’t talk. The caregivers helped them understand he wasn’t deaf, he just needed help getting his words out. When he would say something all the children would cheer ‘Wesley talked!! Wesley Talked to ME!!” They were and still are so supportive of him. Plus his director put in a few words at the Children’s Development Clinic and helped get him bumped up the list.

An Autism Diagnosis –  The Other A-Word

What I found out on that cold January day in 2008 almost paralyzed me. Dr. Bowman looked at me in the eyes and said, “Your son has many strengths, however I do see a lot of autistic tendencies.” I tried to reason with her, ” Wesley is not autistic! He makes eye contact, he loves being with me, he smiles! He bonds with people, autistic kids don’t do that.” “Ms.Dupuis, the autism spectrum is very wide. I will run a few more test, but I already have a good idea what they are going to agree with the autism diagnosis.”

I went on to ask about what Jenny McCarthy was doing with her son Evan. A few months ago I had just read the book, Louder Than Words: A Mother’s Journey in Healing Autism. I had seen Jenny promote it on Oprah and for some reason needed to read it. She shot it down saying it was not scientifically based. I asked if he would recover, they refused to give me real hope. The autism diagnosis is really is wild card. No one knows what I child’s outcome will be.

We did the additional testing. I don’t know if it was more frustrating or comical. Every time the person conducting the test would turn around, he would do something she would have benefitted from seeing him do.

The results came in and of course as we expected, he was on the spectrum. We were offered a choice from two provincially funded programs.  We could do either ABA(What is ABA?) or Floortime. However we were lead to believe that ABA was ONLY for families with a stay at home parents. We more or less mislead into the Floortime program.

Honestly for us Floor Time was a waste of time. I was getting frustrated as it was producing NO results. Every time we would finish up the session they would tell me I was doing great. I would ask what more I could do and all they would say is “Keep doing what you are doing.” or “I wish we could record you for other parents to watch and learn.”

Well I don’t know about you, but to me what they were asking me to do was insanity. They were asking me to do the same thing over and over and expect different results. I was frustrated to say the least.

Around this time I had started seeing dating a new guy. One day he called me at work after reading an article about a family who moved across the country to participate in the local ABA program. I told him I knew all about it, but it was for families with a stay at home parent. That’s when he stopped me and said

“Monique, these parents were both busy doctors.”

WHAT?!?!? So I got right off the phone with him and called St.Amant. They assured us they could work with Wes right in his daycare and I’d only have to miss work once every two weeks. We got the ball rolling and wow. Just WOW.

I’m not going to lie, we hit some bumps. One being our first tutor who was good at first, stopped took a turn for the worse. She fell asleep on a public bus during a fieldtrip with Wesley’s daycare while she was suppose to be supervising him.

Then the next day feel asleep at a public park while she was in charge. When I found out about this I demanded she never come near my son again as she was neglecting him and putting his life in danger. I don’t think I have to go into detail about what could have happened to him

.
Now Wesley has a wonderful tutor who teaches him so much! She’s really an angel to us.

When Wesley was 5months old I became a single mom. Things just did not work out between me and his dad. When Wes was a week shy of turning 3 I met my current boyfriend. Who in his own unorthodox ways teaches Wesley so much. As soon as I learned to step back and allow him to get involved he helped teach Wesley boundaries and respect. He helps me every day, I don’t know what I would do without him.

Now Wesley where is he today. WOW he is doing AMAZING. He can sign 100s of words, but is depending mostly on his speech. He’s still uses short sentences, but is improving everyday. He can spell his name, count to 25, read 50 words(just started learning a few weeks ago and is just soaking this stuff up), knows his alphabet and what sound each letter makes. He plays with his peers, loves trains, cars, puzzles and Franklin.

I have ABA to thank, and also a modified Doman Technique, Your Baby Can Read and The Letter Factory.

I hope to come here and update regularly about Wesley progress and any new programs were trying.

Mother and son hugging by waterfall