Buying A Cure

Something I've noticed popping up on Pinterest and Facebook are ads, targeted to parents of autistic kids. They are showing up almost daily now and contain everything from chiropractic treatments, private therapies, toys, books, blankets, apps and computer programs to help with every facet of child development, learning and autism.  They are so tempting, but I don't open them.

Time for a confession.

I am completely guilty & won't apologize for  trying to buy a cure for my daughter.
When she was first diagnosed I threw myself into researching treatments and cures for autism. I read books about parents whose kids had beat the odds, whose autism had been cured by this or that. We tried special diets, supplements*, and bought special toys and books by the dozen on Autism and  treatments.  Eventually, I came to the conclusion that there is no cure, but that doesn't mean that there isn't always, room for growth.

My original goal was to fix my daughter and in pursuit of that I will admit to spending all of my savings, rrsp's, maxing my credit cards  and even selling my house to ensure she had access to any and everything she needs. I derailed my career and poured all of my energy into working with my Tiger Lily.

Some things that I am really happy I spent the money on and believe to have made a difference for Tiger are.

Staying  at home, being there 24/7 to provide the security and routine she needed.  How do you do a good job when your child never sleeps through the night and has 56 appointments in 1 year.

Private Therapies!! The wait lists for therapies were and are just too long.
Tiger Lily started speech therapy before she was even diagnosed. With her diagnosis came referral letters for therapies.   We paid for private until she came up on the wait lists for speech, physio, occupational and ABA. We also enrolled her in the Ontario Early Years resource teacher program,We participated in the YMCA inclusive programs as well.


Supplements:  Gastrointestinal issues abound with autistic children . On the advice of our specialist we gave Tiger a live probiotic.  They are ridiculously expensive but we noticed improvements within a week of starting these. Less crying, less bloating, more bowel movements, more sleep and more speech.. Omega therapy to  reduce swelling in the brain, again we saw marked improvement when we started these.

Better Food: This came from our specialist, butcher meat, home made bread, less preservatives absolutely no Tartrazine ,Aspartame, Sucralose and  no artificial colours and no deli meat was her advice.  Nowadays I always know when Tiger has had the fake food, it shows up in her behaviour, stims and sleep.



What I Wasted Money On.

Books: I should have gone to Kerry's Place or the Library instead of purchasing these.

Sensory Toys: Of course pinterest wasn't around then but seriously, what was I thinking?
I didn't need to buy special toys, I needed to find the cheap version, of the special toys.

Special Play Equipment: Again there are cheaper/ better ways to get results and oh how I wish Pinterest had been there for me.

The Specialty Store Food: It's  much cheaper to just plan ahead and make it yourself.


Things I'm On The Fence About.

Apps, Videos and Educational Supplies: I bought and still buy a lot of these, Tiger loves technology and I try to use that to my advantage but I'm really beginning to feel that maybe there is too much technology and not enough outside time going on. Of course it feels like minus a gazillion degrees outside so I'm going to cut myself some slack.


If you are new to the lifestyle, I envy you the ready information at your fingertips. Use your GoogleFu! Again folks this is all just me talking about my experiences, and I'm no one special.
Do your research, talk to your specialist and make the choices that are best for your child.


The High Functioning Life, where seamless socks cost lots, but they actually stay on.



HFL Mama

Roadmap to Splitsville

Valentine's Day has just passed us by. The Tiger is currently ill, but her classmates sent her a ton of cute little cards and candy (which were delicious), and HFL mama made sure, she and the animals didn't forget to send her some cards and kisses too.  Despite being sick, she enjoyed herself.
 Me not so much.

Not because of anything to do with my relationship or a lack of candy and flowers but because of a plethora of anti love messaging on FB and a nasty statistic that popped up, while I was surfing the web. It said something like 80 percent of special needs parents marriages end in divorce. I found that pretty disturbing and I really hope that it's not accurate, but logically I understand how it could be that high.

Obviously, there's more expense, stress and work involved in raising a special kid and despite all those touching posters about special kids being given to special people, the fact is, I'm not special. Sometimes doing what is best for Tiger has not been what was best for our marriage. Thankfully my husband and I had already weathered a few major storms before Tiger came along, any one of  which could have led to Splitsville.

We've been through, serious injuries, job losses, career changes, returning to school,  purchasing, renovating and selling houses, infertility, miscarriage and now special needs parenting. There is no way I'm going to soap box about how to maintain or save your marriage because I don't know you.
But I digress,  what I wanted to say is wowzers! I don't want to contribute to that statistic and maybe I'll make sure the man knows how much I adore him tonight. I'll start with some buttermilk biscuits because reaching the heart through his stomach is a cliché for a reason.


The High Functioning Life, where the GPS is busted but we still need to find our way,
hopefully together.

HFL Mama.

Spiking Fever Silent Tiger

One of the things I am extremely grateful for is Tigers ability to speak. If your child can't speak they can't tell you what is wrong, what hurts or what happened.
If you are reading this and your child is non verbal I hereby acknowledge that your road is much rockier than mine.

There was a time when Tiger had lost her language and I was left trying to interpret her screams. The pain one is easy, so high pitched you share in the pain.
Rage starts off almost growly and then crescendos into a scream
and you get the picture.

For the last two weeks I've been dealing with a sick tiger. She's been out of school 7 of 10 days and looks like she will be home again tomorrow.  One of the things I use to gage Tigers health is her speech patterns.

A singing child is a healthy child.
A whiny tiger probably needs a nap or is having some tummy trouble.
Silent Tiger means serious illness, doctors and meds.

This afternoon Tiger got quiet, 102.9f. = not good.

I have her back down to 98 right now, but I won't be sleeping tonight as she'll need to be monitored.

One of my big fears is that my Tiger may suffer a regression, one that might be severe enough to  render her speechless.  Giving our girl meds is a tricky business, she is extremely light with a high metabolic rate and sensitive to chemicals.  We may end up in the hospital before we beat this round of flu, cold, ?

Last week the doc said it was viral so no meds but now she sounds all squeky and has this fever I'm scared of, so we'll see what they say tomorrow when we go back to the doctor for the 3rd time in 14 days.


The High Functioning Life where medical mileage is a thing you actually claim on your taxes.



Update: Tiger has a lymph node infection as well as a virus and now we might need to see yet another specialist. One thing about Tiger being sick is that she is so easy to take care of. Normally the girl runs me ragged, but, when she's not feeling well she is amazingly well behaved.

Our Journey to a Diagnosis

     If you've read my previous posts, then you know my daughter Tiger Lily has Autism.
She is now 5 yrs old and doing brilliantly. She is, in my opinion, the poster child for early intervention.  Early diagnosis and intensive therapy have taken Tiger from non verbal and physically delayed to meeting her milestones and able to attend a special school unassisted. I don't have a crystal ball, but I'm pretty sure we wouldn't be this far if we hadn't had an early start.

When did you know? How did you know? How did you get diagnosed so early?, are all questions I've fielded repeatedly.  I'm going to try and answer them all with this post.


When, is the easiest to answer. I knew Tiger was Autistic the day the specialist said so. Up until we received the diagnosis we were playing the guessing game. Maybe its this and maybe its that. Not the answer you were expecting but that's the truth of it.

How is the tougher one. Obviously we noticed something was up pretty early on.
Most babies sleep a fair bit,
Not Tiger.
Most babies like to be cuddled,
Not Tiger.
Most babies will repeat sounds you make to them.
Not Tiger.
Most babies like to be warm
Not Tiger
Most babies will respond to loud noises
Not Tiger.

The last one was the trigger that got us looking a little more closely at Tiger Lily's behaviour.  For the most part Tiger was meeting her milestones with the exception of crawling. At three months she had been diagnosed as having colic which we thought explained the hatred of tummy time and the hours of screaming she did starting each afternoon until she passed out each night. Each day was a new day and I did my best to be a good mama. She was breastfed, she had a routine, we went on walks we looked at books we played games  and I sang and danced with her in my arms. She seemed brilliant to me playing with her shape sorter and stacking her blocks like a champ. One day I spilled something on a hot burner and the fire alarm sounded off. I immediatedly looked to Tiger ready to calm and comfort her,  but she was oblivious.

Awooogah Awoogah alarm bells went off big time.

IS SHE DEAF?? is that why she screams so much??? UH OH.

I told her Daddy what had happened and he did some googling and we did some experimenting with the tiger. ( please note we were researching child hearing loss and deafness in children not autism)

We put her down with her toys and waited till she had turned away from us to play. Then we said her name.
Nothing
Called her name
Nothing
We kept getting louder but nothing.
Then I asked tiger to turn around and look at Mama
She did it.
If we kept talking beyond her name, she would look at us but if we just called her name or banged on some pots and pans etc she wouldn't respond.

Hubby speculated that she was maybe just hard of hearing or deaf on one side etc or just ignoring us.

We booked a doctors appointment and I signed up for Sing and Sign Language for babies.

Things got a little more interesting there.
Tiger is an only child and although we had seen friends babies and been to play centres etc I had never really been comparing her to other children her own age. The class was interesting, Tiger learned the food signs pretty quick and she would respond yes and no to them, but she never made any attempt to make signs herself.
Tiger liked play time and sign time but when it was time to sing she would start screaming her head off. I was the only parent who consistently had to go to the quiet room with her baby, while the rest of the group sang songs and did actions. She had gone from deaf to hyper sensitive.

Then she said her first word. "Kittycat"

Not mama or dada or up, Tiger Lily is original. She pointed at our Maine Coon and clear as bell came out with Kittycat !

She was 9 months old.

The next word was Blueberry, then up, then mama, then dada.
(I was a little miffed that I ranked 4th)

Then on Oct. 31st 2010 Tiger got sick, really sick and really fast. Instead of going trick or treating or handing out candy for her first Halloween,  we went to the hospital, where they pumped our little girl full of meds to bring her suddenly raging fever down. A chest Xray revealed fluid in her lungs and she was given antibiotics. She spent the next couple weeks fighting a chest infection. but she got better.

The next couple months were chaos as we were downsizing our house so I could be part time and so my awesome friend could watch her in her home daycare. You see Tiger still screamed A Lot and I was having trouble finding a daycare that was up for taking care of a roaring tiger. Our doctor had referred us to a pediatrician but we were still waiting for our appointment.

So we moved and I went back to work and Tiger Lily started daycare and stopped talking.

NOTE: If your child stops talking tell your doctor!

We saw our gp and referred us to a pediatrician and for a hearing test.

Tigers hearing was fine but she displayed auditory sensitivities bringing her arm up and hitting across her chest in an involuntary movement when certain pitches and volumes were reached.
But there was a waiting list for the pediatrician.

Tiger had a very hard time adjusting to the move and daycare. We didn't sleep through the night for months. My very good friend was reporting back to me that tiger was not like the other kids. That she would scream murder if any other child intruded on her space and that on average it took almost an hour each day before Tiger Lily would be ok to come out of her high chair and be on the floor with the other kids. She was also really struggling with walking, falling as soon as she let go of the couch or table, she just couldn't seem to get the hang of it and it wasn't getting better.

About this time I found out the pediatricians office had lost our info, so back to the bottom of the list.
She was 15 months old now.

Then some random luck.

My friend, who was providing daycare took all the kids to an Ontario Early Years Centre. There was a doctor (I think there to see another child on the spectrum) but amongst all the kids in the centre they picked out my Lily and started asking questions.  They provided my friend with information on screening and getting Tiger Lily tested and thus the ball started rolling. I decided to use my powerful googlefu and find a specialist, I called their office and asked what I needed to do to have my daughter seen sooner rather than later, explaining how long we had been waiting to see a pediatrician and what had happened at the OEY.

I called our GP's office and had them fax the referral the same day.

We saw the specialist, did the tests and were diagnosed before Tiger was 2 yrs old.

My best advice to anyone who suspects that something is going on is
DO NOT WAIT & SEE , get screened, tested etc.

Don't be afraid, maybe its nothing, maybe its something life altering, or something in between,
but not asking and burying your head in the sand will not help you, or your child.