Saturday, April 30, 2011

Snapshot Shock

The other day I was going through different blogs and I jump around to find ones of interest.  I happened to pick one at random and this is how it went.

"Click"!  "Hmmm, that picture looks just like Austin at a year old ... really like Austin, OMG!  It could be Austin!"  That was the thought going through my head when I saw this picture of a young boy,  probably a 1 or 2 years old.  He was standing in front of a cupboard (almost identical to the one at Austin's Grandmother's house) and he had removed the cans and stacked them one on top of the other, like a tower.  This is exactly what Austin would do when he was this age.  The remarkable thing about the picture was the little boy was around the same height as Austin (at that time), had very similar looks, playing in the same type of cabinet (placement, colour and all) and had made a tower out of the same type of cans.  It was just like looking at Austin in a picture but it was not him.  I have to say, it freaked me out ... a lot! 

The thing that really hit me (because we did not think anything of this "game" Austin would play at that time) was there was a one word caption, at the bottom of the photo, that caught my eye after my amazement subsided ... "Autism".

*HUGS* to all!

Tuesday, April 26, 2011

The Mouth on that Mario!

Not so long ago, I could hear Austin playing Super Mario Brothers on his Wii.  All of a sudden I thought I heard a swear word come out of my sweet little boy's mouth.  I was in my room, not too far from the living room, and got up right away and went in, "Austin, what did you just say?"  Normally, he would repeat whatever he said back to me.  Not this time.  Again, "Austin what did just you say?"  He replied "Nothing ...".  Far be it for me to repeat the word to him.  So I told him, I thought he had said a bad word and did not want to hear it from him again.  "Okay." was the only thing he said.

The other day, Austin asked me to play Super Mario with him.  So I did.  We were playing and trying to beat the "monster" at the top level of the castle when it bounced on Austin's character (Mario, of course) and he was knocked out of the game.  "SH#TS!!!" came right out of my son's mouth!  OMG!  I was shocked!  "Austin!  That is a bad word!!!"  "Where did you learn that word from?!!!!"  Austin's reply "From Mario, he says it!"  "No, Austin, I believe if Mario says anything, it would be 'shucks!'"  (I really have no idea if that is what Mario says or not.  I thought it was the only reasonable explanation at that moment.)  So, Austin is learning what bad words are ... he is even figured out it is something he needs to hide if it slips out.  So far I have got him saying "shucks" instead so let's hope that trend continues.

After the shock of this new behaviour wore off, I was thinking ... what does this mean?  I have heard Austin repeat a bad word in the past by overhearing adults talk (let's face it, things slip out sometimes and you can't always control what other people say around your kids) and never put it together.  This is a completely different ballgame.  He knows, I know he knows that this is something you say when you are frustrated.  Is this a speech development thing or a typical development thing?  I am curious to find out.  Bringing this up at the speech therapist's office next visit should be interesting ... I hope she doesn't ban Mario from the house! ;)


*HUGS* to all!

Wednesday, April 20, 2011

No Envy Here!

The other day I was telling this story to my friend.  I think it is really appropriate for Autism Awareness Month.

Not so long ago, I was visiting someone very close to me and dear to my heart.  It was an afternoon visit (I do not do these often because they are harder on Austin).  We were delayed in leaving; never a good thing.  I try to stick to an hour or an hour and a half tops for a visit, especially with both children and when I am alone.  It goes much better if I stick to this plan.  So we were late leaving and well, things got a little hairy!  This is to be expected since Austin gets stimulated and tired.  Add Kaleigh to the mix and you get a three ring circus!  (Or maybe a two ring one in this case.)  I kid you not!

I went out and loaded my SUV with the kids' things and came back into the house to get them dressed.  I cannot even tell you how long this took, a long time ... more than 15 minutes, that's long for them.  Anyway, I eventually got them in the truck after a lot of counting and repeating.  I walked back up the driveway to say "goodbye" to this person I hold very dear to me.  Once I got there, they said to me "I would not want your life!"  I was so shocked!  I felt like someone punched my heart right out of my chest and it landed somewhere on the ground behind me.  It really, really hurt my feelings, and I said "How can you say that to me?".  "I LOVE my family!"  They responded with "I know, I just couldn't handle that kind of pressure, it's a lot.".  I guess I do not see my life the way other people do.  I just go day by day like anyone else.  Now I know this person did not mean to hurt me, I get that.  It is not their fault.

Before I left, I explained that this behaviour is expected by Austin because he is on the spectrum and this person is aware of this fact.  It doesn't matter though, sometimes it just doesn't seem to compute.  It does not stop me from trying to raise awareness and explain to people that Austin is reacting a certain way because he is on the spectrum.  People will "get it", or they won't.  I will not give up trying to get people to understand.  Knowledge is power people!

Peace and *HUGS* to all!  :)

P.S.  Thanks to Leslie for inspiring me to write this post. :)

Tuesday, April 19, 2011

Disputing The Diagnosis

Recently I have been reading other blogs written by people with children on the spectrum.  Most of them have something in common, schooling and the uphill battles they are experiencing when it comes to their children.  My heart goes out to all of you.  I truly feel for you.  The amount of frustration is overwhelming.  I have decided to share my story about Austin with you.  He will be entering the school system this year.

I live in Québec, Canada (a compromise I made when I got married, my husband grew up here, I grew up in Ontario ... my home).   This province is, well, frustrating to live in at the best of times.  They do things differently than the rest of our beautiful country.  Now, don't get me wrong, I am not bashing Québec, just bringing to light that there is something very wrong when this province is the only one that can question my son's diagnosis.  That's right!  Québec is the only province in Canada that does recognize my son's diagnosis of PDD-NOS.  Why?  Let me elaborate for you.  Read on ...

In Québec, you must have a Psychiatrist determine whether your child is on the Autism Spectrum.  A Psychologist's diagnosis has no value here in Québec.  So, my son must be re-assessed by a Psychiatrist.  The school board here will not accept his diagnosis until he is re-assessed and the diagnosis is confirmed.  It is truly frustrating!  I had already gone head to head a few months ago at a Special Education Advisory Committee meeting with a woman who was leading the meeting.  So, it had already been brought to my attention that this could happen, my son would need a diagnosis by a Psychiatrist to get the support and help he so desperately needs.  This woman I had been questioning, told me to "Bring it!" (doesn't she sound lovely?) at that meeting when I put up a fuss about the Psychiatrist and I told her "I intend to bring it!!!".  (I dropped off documentation this morning that was requested by the school board late Friday afternoon.)

Now, this is the part of the story where is gets really nutty!  Austin was seen by a team of Psychiatrists at CHEO prior to being sent to a Psychologist for diagnosis.  You see, the Psychiatrists (there were 4 of them evaluating Austin) could not say whether he was on the spectrum or not and needed to see someone who specializes in this type of diagnosis.  Okay, off we went.  Sure enough, he was assessed and as you are all aware, has PDD-NOS.  It is hard enough to deal with the shock, disbelief, pain, denial ... you all understand the process but to have someone come back at you and say, "Yeah, we don't trust that diagnosis.".  Surely, they jest!  Nope!  So, as I said to the woman who called me the other day from the school board (not the same lady from the meeting, I don't think she likes me ... LOL!), I am basically running in a circle.  Psychiatrists sent Austin to a Psychologist for diagnosis and now, Québec is sending him back to a Psychiatrist for a diagnosis, which they could not do the first time ... alllllllll righty then!

There is some very good news out of all of this craziness.  The Québec school board said Austin could see a Psychiatrist in Ontario.  So I called the Psychologist that diagnosed Austin and low and behold, they have just secured one for their team starting in mid-August.  Austin is on the list to see her.  YAY!  So happy about this since it will involve very little upset or discomfort to Austin since he will be going to the same place and knows all the therapists there already.  They are an exceptional group of professionals, not to mention, wonderful people!  I cannot say enough good things about them and feel very lucky to have them helping Austin. :)

So, we will wait and see but in the meantime, I am going to fight as hard as I can to get Austin a "temporary code".  That will ensure that he will get help until he can be re-assessed (and the report comes in).  You see, Austin is a flight risk, so I will fight as hard and as long as I must to ensure he is safe at school.  I am a fighter and will do my best for Austin, he deserves it!  The most important thing in the world to fight for and protect are our children.  So I am ready!  People say "Don't poke the bear!".  Well, someone poked this Mama Bear and it just turns out I happen to be a GRIZZLY!  "RAAAWWWWRRRRRRR!!!!!!"

*HUGS* to all

Friday, April 15, 2011

Putting 2 and 2 Together

A little story to make you giggle today :)

The other day Austin and I were leaving swimming.  I always let him get a little snack and a juice.  He passed his swimming level that day, so he got a bonus snack.  (WELL DONE LOVEY!  I am so PROUD of you!)  He got his snacks and then purchased his orange juice from the vending machine.  I told him, "Don't drink too much of that because you have to go to the barn to see Rogie (Grandma's horse) with Daddy, Kaleigh and Grandma.  I don't want you to have to go pee ... " Before I could finish what I was saying, Austin turned to me and said "There's a bathroom there, right?"  I was shocked!  It is definitely a new thing, making a connection and verbalizing what he has put together.  Not to mention, the way he said it, he was condescending ... LOL!  Sorry, but it was funny.  I responded with "Yes, they do have a bathroom there Austin, very good!"  He looked up at me and just said "Well?"  LOL!  It was just like him saying to me "Well then, what is all the fuss about?"  You had to see the annoyed look on his face!  It was AWESOME!  I know it sounds crazy but I also know some of you parents out there reading this will "get it"!

Have a great weekend everyone!  *HUGS*

Tuesday, April 12, 2011

Tender Tears

After Austin woke up from his nap yesterday, he wanted to talk to me about what happened and why he was so upset.  This has not occurred before.

Austin started out by saying "Mommie, when I screamed for you, you came!".  "Of course, I came.", I replied.  He continued to go on about how upset he was that Kaleigh changed the station he was watching.  I took him back to my room to talk to him in private.  (Kaleigh is only 3 after all and I don't think that she needs to hear Austin discussing how upset he is with her.  She is a very sensitive child, no kidding, really sensitive.)  Austin sat on my bed and I told him to call me or just come get me if Kaleigh does something to upset him.  I explained that he does not need to get so upset, when I can intervene and fix things easily.  He seemed to understand what I was saying.  I asked if he was okay, and he said he was, he was not.  How can I tell?  Well, when Austin is still sad or upset he tries to say "yes" but his little mouth forms the saddest little frown you have ever seen.  Seriously, it could make grown men cry.  He tries to smile and put on a brave face but he is so upset, the corners of his mouth turn down.  He looks so innocent and sweet, not to mention disheartened.  Poor little guy. :(


I continued to talk to Austin, meanwhile, tears started to well up in my eyes.  I cannot help it.  (I wish I could put into words how much I cherish this little boy.  He owns my heart, he and Kaleigh.)  The more I spoke, the more I teared up.   I was only trying to reassure Austin that I am here for him, no matter what!  As tears started to roll down my face, Austin started to tear up ... he threw his arms around me and HUGGED ME!!!  OMG! OMG! OMG!  I just burst into tears!  (I am teary now!)  My little guy, who usually is so passive to sad emotions, or who will even who giggle nervously when someone cries, felt my pain!   Felt empathy!  Felt sad for me!  His emotions are developing!  It is so WONDERFUL!  Don't get me wrong, I am not elated because he is sad and crying, but because HE FEELS!!!  I cried on and off for hours lastnight ... it is such a breakthrough for Austin.

I feel privileged to have been the one on the other end of that hug and to share tender tears with my sweet, sweet boy!

*HUGS*

Monday, April 11, 2011

Grasping The Growth Spurt

The last few days have been pretty tough for poor Austin.  He has been out of sorts and very emotional.  You would think by now I would know what is going on right away, no, sometimes it takes me a while to recognize what is actually happening.

When Austin goes through a growth spurt (it could be physical or developmental, sometimes it takes a while to figure out which one it is) he is very easily brought to tears.  The smallest thing can upset him.  Like today, Kaleigh changed the channel on the TV and the screaming and crying commenced.  OMG!  I thought someone was seriously hurt with all the yelling and crying.  I thought Kaleigh had hurt Austin.  I put my laundry down and go running.  Austin is sitting on the couch, next to Kaleigh, in full blown tears!  I ask him if he is hurt and he says "No, Kaleigh turned the station!".  "What?  Kaleigh turned the station and that is why you are so upset?"  Austin replies, "YES!".  Okay, time for a little separation to cool down.  Austin is screaming not to put him in time out ... I told him to go to his room, it is the only way I can settle him.  Kaleigh was put in time out too, separately, for changing the channel in the middle of Austin's program.  What transpires next, is tough, really tough.

I have Austin in his room.  I tell him that he cannot scream and yell over something that small, it really is unnecessary and since it is nice out now, all the windows and doors are open, people do not want to hear that screaming.  He is so upset and says that he cannot tell my why he is crying, just that he cannot stop.  (It is so hard for me to see Austin like this ...).  I tell him I will give him a minute to calm down and come right back.  Meanwhile, Kaleigh has made it to the potty and she needs help.  So I go help her.  Austin starts screaming and crying from his room, "MOMMIE HELP ME!  ANYONE, PLEASE COME HELP ME!!!".  OMG!  So I leave Kaleigh standing at the sink where she is washing her hands and run back to Austin, thinking he must have hurt himself or something ... nope, he is sitting on the edge of his bed crying his eyes out!  I shut the door and very calmly (you have to be calm, if you get upset, Austin will get even more upset) and say to Austin, "Please tell me what is going on?  I am trying to help, I am trying to understand, please help me.".  He insists that he does not know what is going on with him or why ... all of a sudden ... I "got it"!!!  A growth spurt!

This may sound a little crazy to all of you, but it is true.  This has happened in the past and someone told me that you think it is regression but it is not, it's progression.  It is true.  Changes in Austin's speech, comprehension or physical development would spark this behaviour.  How did I not know?  This started on Thursday with some acting out at school.  Friday he was really tired.  Saturday he was crying very easily.  Yesterday he was tired and sensitive and today, well, today was the BIG ONE! 

After I figured out what was happening, I took Austin to my room and cuddled him.  He kept crying for a while but eventually stopped.  I asked if he was okay and he said "I am really, really tired.", so I held onto Austin until he drifted off to sleep.  He is sleeping now, peacefully, behind me, in my bed.  Poor little guy ... it is so tough to hear him struggle to explain what he is feeling, it truly breaks my heart. :(

In a few days from now, a change in his speech or a return to his regular sleep pattern should tell me what kind of growth spurt he has just experienced.  Meanwhile, lots of cuddles, kisses and patience will help Austin get through this change.

I wanted to share this story, just in case you experience something like this, maybe it will help.

*HUGS* to all!

Friday, April 8, 2011

Unloved

The other day I took Austin to speech therapy.  The therapist told me she is done with her recent speech evaluation.  She said that she will do an informal write up, so we can discuss what areas Austin needs to work.  We were sitting in the waiting room and there was another mother present so the therapist did not go into too much detail.  She did say that he is still struggling with the concept of emotions.  He understands "scared" because when she asked, he said he was "scared of thunder".  He does not understand "loved".  This, hit me like a brick in the face.  :(

The therapist explained that she had asked him if he feels "loved" when Mommie hugs him.  He said "no".  That instant my heart shattered!  OH MY GOD!  I cannot believe I am hearing this ... I know that he does not grasp the concept of emotions very well and this is expected with spectrum kids but to be honest, it didn't really help me feel any better about hearing this news.  I said "But he tells me he loves me and I tell him I love him all the time!" (Many times a day.)  Still, he doesn't associate this with being "loved".  I am heartbroken.  I know that my son is loved ... he knows I love him ... why doesn't he "feel loved"?

Later that day, I had to go to my workout class.  The minute I was alone in my car, the tears filled my eyes and I thought "What am I missing?".  "How can I get Austin to understand?"  "He doesn't really feel "unloved" does he?"  I can't even imagine him feeling this way.

The next morning I asked Austin "When Mommie gives you a hug, do you feel loved?".  Austin's reply "No".  'When Grandma gives you a hug, do you feel loved?"  Austin says "No".  I start rhyming off names "When Daddy?"  "No."  "When Kaleigh?"  "No."  "When your teacher?"  "No."  "When Nana?"  "No."  "When Grandpa?"  "No."  So I ask, "Do you hug someone that makes you feel loved?".  "Yes."  GREAT, I thought, so I asked "Who is it?".  Austin's reply, "My teddybear ...".  I was stunned!  (You know, my Father used to say to me, if I didn't want to hear the answer, don't ask the question!  I really need to listen to my Father more!)  I don't really understand this at all.  I am trying but I don't.  So I have started to explain what "loved" means and how Mommie and others show him love.  I think he is starting to understand a little.  It is so strange to me because when Austin is really upset about something, I ask him if he needs a hug and cuddle (he usually starts to cry ... poor little guy ... it's tough some days, he is just upset and can't say why, it's hard ...) and he comes running.  I never put him down or let him go until he is ready.  I always ask him before hand and he will say either "No, I need more cuddles Mommie" or "I'm good Mommie".  This is so tough ... I know he knows we all love him.  I know he will get it someday but it is breaking my heart for now.

The real crazy part of this story, when Austin was telling me he didn't feel loved by anybody but teddy, Kaleigh picked up my sadness immediately.  She ran to me, grabbed a hold of my legs, hugged me as hard as she could and told me "It's okay Mommie, I love you!".  Okay, now my heart is really mush!  Kaleigh is so in tune to people's emotions, it's wild!  Austin and Kaleigh are so different.  Austin is more like me and Kaleigh is so much like her Daddy.  They are both adorable children and I LOVE both of them so very much.  That is what is most important.

I wait for the day when Austin tells me ... "Mommie, I feel loved ..."  The day ...

*HUGS*

Wednesday, April 6, 2011

Little Ones Lost

I wanted to do a post about Austin but there is something that is just tearing at my heart.  There is a little boy, Adam, who went missing on Sunday in Laval, Quebec.  He is a darling little boy (just by looking at his picture) who is only 3 years old.  He is autistic, hearing impaired and has a speech delay.  This poor little child was outside playing (hide and seek) with his 7 year old sister, when his father went in the house just for a few minutes.  They were at a friends place situated on the water.  The sister went into the house to tell the father that she could not find Adam.  Everyone started to search, they could not find him.  The police and search and rescue were brought into find Adam.  It is Wednesday, he has not been found as of yet.  This, breaks my heart.

I have heard these stories many times, autistic children walking off and not coming back.  There was a little boy in 2009 found after spending 2 days in the forest right near his home.  He was suffering from hypothermia and brought to hospital but he sadly passed away.  His name was James, he was only 7 years old.  This is truly tragic.

In a newspaper article about Adam this morning, a program called "Project Lifesaver" was mentioned.  James' mother has been helping implement this program with search and rescue in Cape Breton since 2009.  It helps to locate people with Autism or Alzheimer's.  It uses tracking devices, which the person wears, to find them.  Sometimes within 30 minutes.  I think this is a great program.  Just think of the children that could be saved.  Not to mention the help it could provide families with people dealing with Alzheimer's.

I pray that little Adam will be found safe and be okay.  My heart goes out to his family and to Adam.  All of our children are so precious.  Please, let's do all we can to keep them safe. 

*HUGS* to all ...