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.
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