My family

Monday, August 8, 2011

Feeling Useless!

I'm in a dark mood today.  Mostly because I'm not feeling well and I'm frustrated because I don't want to feel this way, I want to keep up with my children, and work, and life but I feel like I'm stuck like a broken down car.

Last week I had to go to the dentist for an emergency appointment because of an absessed tooth.  He put me on two types of antibiotics and is making an appointment with the dental surgeon to get one possibly two of my back teeth out.  Then last weekend my fingers swelled so much I had to get my wedding rings cut off, then the next day I noticed my feet and hands were swelling and I could feel fluid in my legs.  I went into emerg and they put me on Losec but to take it as needed because he wasn't sure if the water retention was from all the meds I'm taking or something else which will have to be investigated.  I took it for three days and I lost 6 pounds of fluid.  I haven't taken it for the last couple of days but I can feel my feet swelling and the fluid in my legs again.

I've lived 22 years with diabetes with no complications to date, I've been very lucky to be able to say that.  Now I wonder if those 22 years have finally reared it's ugly head and will start causing me problems.  The past year I haven't been myself, I'm always tired and sick with some sort of infection.  It's so frustrating trying to live your life, looking so young and feeling so old, people expect me to act like a healthy 33 year old but I'm not!  I've seen 70 year olds with more energy than I have.

It just saddens me and I don't know what I can do to feel better.

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.

Sunday, June 19, 2011

Life is Crazy....but good!

Wow, it's hard to believe it's been eight months since I've written anything on here.  I didn't even remember my account access information or even which email I had used when I opened the account.  Luckily, I stuck a link to my blog on under the Special Needs community board and it was still there.

A lot has happened since I've last written.  April marked a year since Ian started IBI Therapy and I'm pleased to say he's come a long way in a year.  He used to be a child with no verbal communication with limited eye contact and little understanding of what we were saying.  Now he`s finally talking, not a lot, but he`s doing a lot of echolalia, which is echoing what he`s hearing.  He`s repeating almost everything he hears.  He has become excellent with eye contact and now looks people in the eye, not just family members.  He also is understanding everything we are saying now and following through on verbal commands.  This has been one of the best things I`ve witnessed because now we know that he`s in there listening to us.  I`ve chosen to keep him back from starting Kindergarten for another year, I think an extra year of IBI the way he`s been receiving it would be very beneficial to him.  It`ll also give us another year to try to get him potty trained....we haven`t had any luck with it yet.....sigh!  I have a lot of hope for Ian, and I`m not as afraid for his future as I used to be.

Amy has had a great year too.  This is the first year of school where I haven`t been called at home because of her behaviour or have been told ``her medication needs to be increased``(She`s in Grade 4).  I`ve been very grateful to her teacher who seemed to take her diagnosis seriously and took her under her wing.  At the beginning of the year we were told she`d have to be put on an Adapted Math program since she was tested at a Grade One level in math.  Her teacher told me at our last Parent-Teacher meeting that she has been in the regular math program and has been doing quite well.  I have to wonder, did something just all of a sudden ``click`` in her brain (my question mark isn`t working on this keyboard).  Whatever it is, I`m not complaining.  She`s also shown an interest in art and has been taking art lessons from a local artist for the past 6 weeks.  She`s still an avid reader and I try to make sure she has plenty of books around to read.  This was something I never developed since reading was such a struggle for me growing up.  I was in Grade 7 before they finally figured out I couldn't read!  Although she`s doing very well in school she`s still lacking in social interaction and awareness.  To me, Ian has become more socially aware than she is which worries me, I hope it `clicks` someday.

Lyla is my little terrorist now!  We`ve been aware of her slow speech development for awhile now and I`ve finally went to the doctor to get her into speech therapy.  I`ve been holding out because I know the speech therapist, she`s Ian`s therapist and is totally useless!  She`s government appointed, when I complained about her before she stopped seeing Ian for a long time and then we had no speech therapy.  So, I`m still not sure what to think about Lyla, `she has great eye contact, understands everything you say to her, follows verbal commands and is making progress on her own with talking.  She has developed quite an attitude though and is sometimes worse than Amy or Ian put together.  It`s funny how Ian and Lyla seem to be both at the same developmental level, again, it gives me hope seeing that he is progressing.

As for Curtis and I, we`ve been managing alright, I have my good and bad days.  My moods are very affected by my blood sugars though, if my blood sugars are high or low then I`ll be in a very negative mood, which hasn`t been happening a lot.  We`ve even managed to take a long awaited vacation together.  Thanks to Ian`s IBI tutor who was patient enough to take care of our kids while we were away, we had 8 days away, 7 of them being in the Virgin Islands.  It was a wonderful vacation!  Very relaxing.  Now it seems just a distant dream, like did we actually do that.

So that`s eight months in a nutshell.  I really hope to continue writing this time, I have more time on my hands now since I`ve taken a few months off work.

I hope you stay tuned!