My family

Monday, July 11, 2011

Hind Sight is 20/20!

After writing my last posting about Ian's diagnosis I found a notebook that I wrote in at the time we were waiting for the diagnosis.  In it I wrote the behaviours I observed Ian doing at that time, I will list them below as I wrote them back then.

October 8, 2008

- When playing with cars he lies on the floor and watches the wheels.  Yesterday he turned the car over and started to spin on of the wheels.

-  Hardly knows any words - Mama, Dada, Kitty, Go, Nana.

-  Doesn't tell me what he wants, doesn't point to things

-  Makes strange noises which he'll repeat all day.

-  Hardly plays with toys, would rather get into the fridge, stove or cupboard.

-  Loves climbing things especially stairs.

 -  Very picky eater, texture of foods can turn him off will only drink milk or Apple Juice.

-  Loves fans, elevators and anything with buttons to push

-  Keeps shutting the doors down hallway.  (Makes sure they're always shut)

-  Doesn't respond to name very often.  Could be standing right in front of him telling him something and he completely ignores me.

-  When excited he rolls his hands and pats his ears.

-  Loves pillows.  (Sensory)

-  Will only interact with you in play if playing chase.

November 16, 2008

-  Doesn't like to be restrained or held but likes to be touched.  Likes you to run his head, tickle him or just rub his legs or feet.

-  Watches fans, turns lights on and off, open and closes cupboard doors repetitively.

-  Looks out the corners of his eyes and shakes his head back and forth.

-  Will put things on the floor, sippy cub or soothers and do circles around them.

-  Will only play with toys a certain way like some cars that make noise, he'll just play with the buttons, other cars with no noise he'll just roll them back and forth while staring at the wheels.

-  Doesn't ask, point or indicate when he wants something or some help.  If he sees something he wants he tries to get it himself and won't indicate to us if he can't reach it.

I'm putting this out there just in case some parents might observe their children with the same issues but like me, thought it was just normal or just didn't know what it was.  This is what Ian was doing, other children do other things that Ian doesn't do at all so the Spectrum is very vast.  Autism Awareness is the key to early diagnosis and to the all important therapy that they'll need to receive.  I'm proud to say that Ian doesn't do all those things on this list anymore and has much more words.  He's finally requesting and pointing to the things he wants or needs and is showing us that he is in our world and is quite happy.

Stay posted to see his latest accomplishments!

Sunday, July 3, 2011

Ian's Diagnosis

Having Ian was a totally different experience for me than having Amy.  I was in a much better place in my life. I didn't have the first time mother jitters, and his delivery was a planned c-section, much different than the forceps that forcibly pulled Amy from my body.  Even though he did 5 days in the NICU, he was the healthiest of the three newborns weighing in at at hefty 10lbs, 11oz at 38 weeks.  I fell in love with him immediately, with Amy it took some time.

I was totally oblivious to what was happening around me that I didn't notice he was delayed.  We seemed normal to me, he had these big bright eyes that looked deep into mine, smiled and cooed like any other baby.  He reached all of his developmental milestones up to about 6 months, then he kinda got stuck.  He said Mama, Dada, kitty at 6 months old, sat during the right time, walking by the time he was a year old.  Sure he was quiet and didn't say many words but my mother told me that my brother didn't talk till he was 2 so I figured that he's just a boy, it'll come.  I didn't notice then that he wasn't pointing at anything or requesting things with gestures, it had been 5 years since I had a baby and Amy reached all her milestones in record time, walking and climbing out of her crib at 11 months old, I figured couldn't compare him to her.

I can't remember how I found myself at the Pediatricians office.  I don't know if it was a doctors referral or the Public Health Nurse, I just know we had an appointment and we were there.  I remember the Public Health Nurse asking me if I'd like him to see a speech therapist at his 12 month visit but I told her, he's a boy, it'll come.  Anyway, at the Pediatricians office the doctor was asking me lots of questions and had a list she was filling out, I just thought it was standard procedure, there's nothing wrong with my boy.  At the end of the appointment she told me that Ian would be placed on the Autism screening list to rule out Autism and gave me a blood work request for Fragile X syndrome and some other disease I can't remember the name of.  I really just thought she was doing her job and that he was fine, that she had to rule out Autism, I didn't think he needed to be there in the first place.  Now I know how important that list is and how difficult is to get on that list.  I can tell you that earlier that winter the daycare was concerned about Ian's hearing, he wouldn't respond to anything around him, even if you were directly behind him screaming his name, he wouldn't turn around.  I thought he was deaf so I set out to get his hearing checked.  After hearing that it would be a long wait for him to be seen, I brought him to a private Audiologist who tested his hearing and could tell his eardrums were performing normally and that he'd need a much more thorough exam from the Provincial Audiologist who had better equipment.  She forwarded a letter onto the Provincial clinic and he got into see them a little earlier.

Finally, the Provincial Audiologist was able to see him.  She performed her tests and was able to verify that Ian's hearing was fine and asked if I would like a request for speech therapy since he still wasn't talking a lot at that time.  It was sometime between that Audiology appointment and the Speech referral that it finally started to click with me.  I was already pregnant with Lyla when I came to that realization.  I bought some books and started to read, I saw some similarities with Ian but nothing that really stood out other than not responding to name so I still wasn't exactly sure.  We finally had our Speech testing appointment to see where he was with his speech.  In between that appointment and the previous Audiology appointment I had learned that we had been put on the Autism screening waiting list, the testing date was a year and a half away!   I had also learned that waiting for the testing was only half the battle, if it did turn out to be Autism the wait list for IBI therapy was 1-2 years. I had talked with my family about getting him tested privately to see if it would speed up the process.  So when we were in the office of the speech therapist who was testing Ian to see what level his speech was at, I paid attention and saw the list of words that she was ticking off, many of which were unticked.  I saw that Ian wasn't doing much of anything that she expected.  I mentioned to her that there was a question of Autism with him and asked if she knew any private Psychologist who would be able to test him.  She told me she'd look into it and get back to me.  Well, when I was contacted by the head of the Provincial Autism team telling me which tests Ian will need to have done to be recognized by our government for funding and getting a name from her of whom I could contact, it pretty much confirmed what the Speech therapist thought about Ian.  I called the private psychologist and made the appointment in the summer of 2008.  January 2009 at the age of 2 years, 4 months old, two weeks before I had Lyla, Ian was diagnosed with Autism. 

I didn't cry, I wasn't surprised, I was just thinking, what do we do next?  Later, the tears would come.