My family

Monday, March 11, 2013

God is looking after him!

Do you know how many countless hours of worrying and prayers I have put into my son Ian?  I would worry and be anxious and worry and cry and pray and hope and I made myself sick over it.  The anxiety that I had once became so unbearable I found myself at the pharmacy to pick up a prescription, remember I'm a diabetic so I have a lot of prescriptions, and I started crying uncontrollably.  Luckily I was in the same building as my doctors office so I went up the elevator and told the receptionist that I really needed to see someone.  She saw how upset I was and squeezed my in very quickly.  I explained to my doctor what was going on and he said to me, do you realize that most of what you said has to do with Ian?  Yes, he was a handful.  He put me on antidepressants and told me to get more help and respite care to get breaks from the house.  Sometimes that's hard to do for an autism parent.  Who can you find that would know how to take care of your child with autism who can't communicate?

He couldn't communicate, didn't know how to talk, ask for what he wanted or let us know how he was feeling.  Do you know how frustrating that is for a mother let alone the child trying so hard to get your attention?  He would slam our cupboard doors repeatedly to get attention to let us know he wanted food. He would gouge our walls with anything he could get his hands on like a DVD or keys or toy tools to let us know he wanted to watch a DVD or a show on television.  We have triple locks on all our exterior doors for when he would escape out the door when we were sleeping or busy with something else in the house.....we do have 2 other children to care for.  Nobody has any idea how hard it is to live like this unless you are living it yourself.  Don't even try to console an autism parent if you have no idea because we know you're just blowing smoke and it makes us mad!  You can't tell us how to discipline our child, that whatever worked for your "normal" child will work for mine because my child isn't your child and he has issues that make disciplining him do more harm than good.

During the summer of 2012 my anxiety was at it's highest.  Ian was preparing for Kindergarten.  We had held him back when he was five.  He needed another year of IBI training because he was just too underdeveloped to go to school.  Now after 2 years of IBI training in our daycare with his tutor, that certainly was and is a gift from God, everything would change and the security we had built around him would be changed.  Turns out, I had nothing to fear.

Ian is thriving in school.  He has two Educational Assistants, one in the morning and another in the afternoon. He still needs the one on one because he can't sit still in the classroom for very long.  But, he can now sit for 10 minutes with his peers, which is huge for him.  He can talk, we've waited so long to understand him and now we do.  There's no more pounding on our cupboard doors, gouging our walls or trying to guess what he wants.  He can tell us now and does plus he lets us know that he's listening to everything.  He's learning everything his little brain can let him.  He knows his alphabet and numbers, he can count to 100.  He's learning to read and is doing quite well at it.  His teacher, Educational Assistants and peers at school just love him.  When he goes to school in the morning, the little girls crowd around and lead him into the classroom.  The day doesn't start until he counts the number of days they've been at school that his teacher has posted around the classroom.

I am so proud of my boy.  I'm grateful for everyone who's invested their time into him.  My anxiety is gone, I now know I don't have to worry God is on our side and is taking care of him.  I'm decreasing my antidepressants and hope to be off them soon.  Life is good.

Wednesday, June 6, 2012

Ian then and now

June 6, 2012

In red I will give you an update of what Ian used to do back in 2008 and what he does or doesn't do presently.

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.
Ian doesn't do this anymore.
- Hardly knows any words - Mama, Dada, Kitty, Go, Nana.
Ian knows a long list of words now and can speak 5-7 word sentences.  He's still very quiet and sometimes needs coaxing.
- Doesn't tell me what he wants, doesn't point to things
He's still not a big pointer but he will tell us what he wants.
- Makes strange noises which he'll repeat all day.
Doesn't do this anymore, talks more instead.  Plus he likes to sing songs like ABC's and Twinkle Twinkle Little Star.
- Hardly plays with toys, would rather get into the fridge, stove or cupboard.
Ian loves playing with his Ipad, Wii games, still plays with trains and no longer gets into the stove, will get into the fridge and cupboard but only to take out his snacks or drinks.
- Loves climbing things especially stairs.
He's still a climber, not as bad as before but we have to watch him around the house.
- Very picky eater, texture of foods can turn him off will only drink milk or Apple Juice.
Still a very picky eater, he'll eat toast with jam, waffles with syrup, rice krispie squares, and sometimes Kraft dinner.  He does eat more at daycare. 
- Loves fans, elevators and anything with buttons to push
He doesn't stare at the fans anymore, still will push buttons if they're around but what kid doesn't?
- Keeps shutting the doors down hallway. (Makes sure they're always shut)
Doesn't care about the doors anymore, but will shut himself into his quiet room with his Ipad if we're making too much noise.
- Doesn't respond to name very often. Could be standing right in front of him telling him something and he completely ignores me.
Ian doesn't ignore his name anymore although he won't say "what", but it does get his attention.  He's always listening even when we think he's not.
- When excited he rolls his hands and pats his ears.
He doesn't do this anymore, but will flap his hands if aggrivated.
November 16, 2008
- Doesn't like to be restrained or held but likes to be touched. Likes you to rub his head, tickle him or just rub his legs or feet.
What kid likes to be restrained?  We only do it if we need to get medicine in him or needs something for the doctor.  He gives kisses and hugs but only when asked.
- Watches fans, turns lights on and off, open and closes cupboard doors repetitively.
Again, not obsessed.
- Looks out the corners of his eyes and shakes his head back and forth.
Doesn't do this anymore.
- Will put things on the floor, sippy cub or soothers and do circles around them.

Monday, April 2, 2012

It's a New Day!

I was just reading my last couple of posts and it brings me back to the darkness I felt back then.  Last summer I walked into the pharmacy and just started crying waiting for my prescriptions to be ready.  I was so overwhelmed with my own illnesses and Ian was being particularly hard to manage that I just couldn't handle another thing at that moment.  The pharmacy is in the bottom of the Medical Center where my Dr.'s office was so I went up the elevator and asked to see him, clearly they could see I was troubled.  I was lucky to get in quickly because I just could not stop crying.  I'm not a person who cries easily, I hold it in as hard as I can, I like to look stronger on the outside then I am on the inside because I don't want others so see how truly vulnerable I am.  I go through life thinking I can handle things on my own and being proud of how I can handle my life when clearly I wasn't.  My doctor gave me a prescription for antidepressants and pointed out how Ian's behaviours clearly stood out from what I was telling him.

Since then another blow has been added to my overly burdened plate.  In January we found out that Lyla our youngest at 3 years old, has also been diagnosed with Autism.  It was very hard for me to accept at first.  She was slow with her speech but at that time it was picking up and she was showing ups how smart she was, but I do see a lot of Amy in her at this age so I know deep down that it's there. 

Even though this might be a burden, I feel so much love for my children.  They are my kids, they are beautiful and I'm so grateful to have them no matter what faults they have.  We are so lucky to not have children that are struggling to just live, they are indeed healthy.  They are so smart it's unbelievable to me sometimes at the things they know and the things they can do.  My children are not a burden, the burden is that society doesn't know how to treat them and we have to figure out how to raise our kids to meet with society's way of living.  We're also very lucky to have developed a good surrounding of support for our family.  I know how fortunate we are to have a wonderful tutor in Ian's life who cares for him as if he was his own.  I know how rare it is to have such a connection with the people who are caring for your kids but I do and it's working for both of us.  I only pray now that as Ian goes into Kindergarten he'll get another great tutor that'll care for him as a person.  I also am really praying that Lyla will get her IBI therapy through Ian's tutor so that she can remain active in our kids lives.  She'll always be an angel to you Ginger!

I'm better now, I know I can't change my children's diagnosis but I can love them and be their mother.  I'll fight for them and do as much as I physically can for them and hope and pray that they turn out alright.  Deep down I know they'll be alright.

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!