A few of my truth's

I often hear *How great you get to stay home with your kids.* or *It's nice you are there when your son needs him.* Don't get me wrong, these are really great things.

I'm grateful every day that I am home, and that I can be available when the school calls. I'm available when it's just not in my son's best interest to be at school, or he needs to come home because it's just not a good day for him.

The truth, I'm home because I have to be. Dealing with Autism is a full time job, more so in the stages we are at. We've been dealing with this, with very little support in terms of tools and resources for him. Another truth is we are broke. I'm not just talking a little in the bank for a rainy day, but gone through our savings, struggling to put a roof over our heads at the end of the month broke.

Between setting up appointments, fielding phone calls from the school, meetings and full blown melt downs there really isn't a employer out there who would tolerate this from a employee. Now, not only am I doing this with one child, but two. My husband works, alot. On weekends too. This makes it difficult to pick up a part time job.

Yes I do home daycare, yes I run a small business on the side but the reality is that this barely covers our bills. Before we had resources available it was paid out of our own pockets. Couple hundred here and there for social skills group. Luckily the school covered transportation because the hours were when my husband was at work and I still had daycare kids. It can cost thousands and thousands of dollars to get psych testing done, to get resources. There is very little financial support when it comes to the testing process.
The days we have meetings and appointments, I often have to make other arrangements with my daycare families. The days my son is just not having a good one results in loss of productivity for me. The bottom line, loss of income.

Getting to this point costs money. Not only does it wear you mentally and physcially on a good day, but it can also put a financial strain on your household.

I've spoken with a few people close to me about our situation and the response often is - get a job. Sure, I'll do that. It's just that easy.

Don't get me wrong, I wouldn't change this journey for a moment. I love my kids, just as they are and for who they are. But again, I find there is still so much educating to be done with the general public. People who have never tried on one of our shoes have no clue what our path looks like.

It's rich, rewarding, beautiful and introduces us to the world through a whole new pair of eyes. It is also frustrating, draining and big drain on financial resources.

So, if my confession does nothing but open the eyes of just open the eyes of one person the I view it as mission accomplished.

Children with autism

I had to share this with you all, because I think it's beautiful!

Wordless Wednesday - I think it's called?

Sensory processing disorder - it's real.....

I'm going to apologize in advance, as this post really is out of frustration.

I betting that everyone has been touched by, knows someone, or knows somebody who knows somebody who has autism.  What amazes me, is how little research is done about it. It baffles me that people don't actually take the time to research so they can better understand, and in turn help a someone they love cope.

My son is sensative. He screams when people tickle him, doesn't handle heat or cold well. Imagine sitting in the scorching hot sun, melting. Now imagine that times 2. Imagine the coldest of cold days, wind blowing in your face and a chill through your body the instant you stop outside. Imagine that times 2. That is what it feels like for my son.

When people tickle him, and then tell him he screams like a girl, or find it amusing that he seems to *over react* to what we see as something simple, it irks me.


Sensory processing disorder (http://autism.about.com/od/alternativetreatmens/a/SPDdef.htm)

Many people with autism have sensory processing disorder. That is, they may be hyper-sensitive or under-sensitive to light, noise, and touch. For some people, these differences can be overwhelming, and as a result they are unable to take part in typical community activities. Ball games, movies, even church can feel like torture.
These differences in sensory reactiveness are labeled "sensory processing disorder" or "sensory processing dysfunction," and may be attributable to differences in brain structure. While sensory issues are not a core symptom of autism, they are very common among people with autism. As a result, many children with autism are receiving treatment for sensory issues, known as "sensory integration therapy" or SI therapy.According to the Ayres Clinic (one of the leading specialists in sensory dysfunction and sensory integration therapy), the following are signs that a child may be suffering from sensory issues - and may be aided by sensory integration therapy:

• Overly sensitive to touch, movement, sights, or sounds
• Under reactive to touch, movement, sights, or sounds
• Easily distracted
• Social and/or emotional problems
• Activity level that is unusually high or unusually low
• Physical clumsiness or apparent carelessness
• Impulsive, lacking in self-control
• Difficulty making transitions from one situation to another
• Inability to unwind or calm self
• Poor self concept
• Delays in speech, language, or motor skills
• Delays in academic achievement

Clearly, this list of issues describes many different types of children, including those with Attention Deficit Disorder, learning disabilities, and even simple moodiness. It can also describe many children with autism spectrum disorders.


So, the next you want to call child you just gave a noogie a wuss, or laugh and tell them they scream like a girl. Think again......

Saying Good bye.....

This is it. The end of the chapter.

Tomorrow was suppose to be my son's last day at his current school. He was to have the morning at his new school and a little party in the afternoon at his current school. I got a email from his teacher yesterday letting me know that she wouldn't be at the school tomorrow afternoon and due to all the upcoming changes it might be best that he just come home after being at his new school rather then go and spend his last afternoon with a supply teacher.

As much as I agree with her and the thought process, saying yes to this idea was hard. Why? Because mentally I was prepared for Friday to be his last day. The thought of today being his last day had me in tears.

Don't get me wrong - I fully know and accept that this whole change is not about me, and this is why we made the decision we did to switch schools. However, I need to have a moment of complete selfishness. I am over the moon that my son can't wait to change schools, I'm glad that this decision has made him feel lighter. That he is happy, and skipping through the hallways at school. I am sad though. I'm sad that In order to do what's best for my son, I'm letting go of my (see, told you selfish) dream to have my kids in the FI program. I'm sad that I'm loosing such an AMAZING support staff, and most of all I'm sad to be loosing one of the best things to have happened to my son. Someone who has been as big of an advocate for him as we have, someone who understands him, and communications accordingly and someone who just really loves him.

So to the following people who have forever touched our lives, I have this to say:

My son's VP and english teacher: Thank you for doing everything you could to make sure you gained my son's trust. For always being understanding but firm. Although it may not seem like it - he did really like you.

To my son's SK and grade 1 teachers and EA staff - thank you for knowing right away that there was something unique and special about my son. For being understanding and ensuring he was always placed in the right hands and care.

The gifts going to my son's EA and CYC

To my son's EA - it was wonderful that Myles felt so safe and secure with you. That you did what you could to help him and encourage him to move forward

To my son's CYC - you rock. Thank you for helping to ensure his needs were alway met. For being such a kind and loving person, who took my son under your wing from the first time you met him. For the messages letting me know you missed him. You have no idea how much it meant knowing that he had support staff that cared so much for him. I'm grateful.

To my son's current teacher: Writing this without feeling weepy isn't easy. This year was tough. Changing to a new school, I was very involved in the process. When D told me who his teacher was going to be this year, I told her - I trust you. If you think it's the best fit, then I'm on board. Well, you were the right fit. You were patient, loving, accomodating and understanding. You have touched our lives and our hearts. You made a tough change for him that much smoother. You took the time to get to know him and figure out how to best help him. It was nothing less then a pleasure to have been able to communicate with you this year and I simply cannot thank you enough for being such an amazing teacher. My son loved you, without a doubt.

PS - please enjoy your locket. (We got her a necklace with a heart locket, containing the autism ribbon, special teacher and you are my sunshine. She really was!)

This one is hard - to my son's Grade 2 teacher last year and his resource teacher this year. I don't know that I can ever fully thank you enough. To me, you were my rock at times and my ally always. Thank you for always letting me turn to you. For advice, for support and a kick in the ass when I needed it. You have become our friend and a huge part of our family. Thank you for making things happen, for being an amazing advocate. Thank you for loving my son every single day, through every ugly moment, through every accomplishment, every victory, every baby step. I firmly believe without you we would not be where we are today. You are simply an angel. *M* loves you, trusts you and I think will miss you the most. He is beyond blessed to have had you in his life and I believe will always look back fondly at the times you've shared. Don't ever stop calling for Allan and Steve. <3

And then there are days......

As you all know, Autism is unpredictable. One day can be like walking with rainbows and unicorns - the next is like the earth is shifting under neath you and you are trying not to get caught in the cracks.

This is how the morning started yesterday. He got up, in preparation to go to school. I made him breakfast and we followed our normals routine of me constantly telling him to eat his breakfast and him pretending to ignore me. On my last prompt to get him to eat, he replied. I can't go. It's too cold, Ill get wet! There is too much snow.

It wasn't long ago it had dawned on me that when he complained about the wind blowing in his face, or the heat, or the cold that it wasn't him simply complaining for the sake of complaining, but that he is just that sensative. What we feel to be hot or cold, he feels just that much more. What seems like nothing to us, has his senses working on over drive. He feels everything just that much more. It's hard to understand, not ever having to cope the way he does. It's real, and can debilatating for him.

So anyway, I tried to change the subject to avoid the conversation totally going south. I then asked him to get dressed and that's when the end of the world came. He missed the TV show Beyblade. The stomping started, his voice got louder and his whole body tightened up. I knew we were done. I quickly tried to reassure him he could watch it tomorrow. Let his know it was an episode he had already seen, trying to get him to realize that it wasn't that bad. Didn't work. The yelling got louder, the frustration was building and the tears were just seconds away from flowing.

I called the school, and emailed his teacher. I knew today was going to be one of those days and couldn't justify sending him to school for his teachers and classmates to deal with.

After what seemed like an eternity, he finally started to come back. Was ready to hear reason and prepared to wait until tomorrow to catch the next episode.

Shovelling heavy, wet winter snow almost seemed like a walk in the park after coping with that first thing in the morning.

You just never know what one day to the next will bring.....