We had an interesting summer...I can't believe its almost over :( All retail stores have their back to school signs up and it gets me nervous. I'm feeling anxious, scared, excited, happy and sad all at the same time! Our last day at the BI is Aug. 31. I try not to think about it because i get very emotional. I feel so lucky to be surrounded with such amazing people. I'm going to miss all of them so much.

quick update

It's been a while since my last entry and I've opened my eyes since then. On my last post I asked my readers to leave comments about their own positive experiences with the school board/system and much to my surprise...no comments were left. Naive...that is what I was. I was very excited about my meeting with the school board, Dimarco's new teacher and his aba providers from the BI. I was so happy thinking that we would not run into problems so commonly discussed on other Autism blog sites. Well the initial meeting went well. The board seem so willing to help and very optimistic. They even commented on the BI, saying that all students with autism should have such a supportive environment. Dimarco's next year teacher seems nice, no non sence, realistic type of educator...which for Dimarco I feel is a good thing. After about 3 weeks, I was told that the BI was not allowed to observe Dimarco in his new class enviroment in order to help with his transition..what a shame.. What a waste of such a valuable resource.. I don't understand why they would deny such a great offer to help Dimarco transition smoothy next year...???

Pleasantly surprised !!!

August 31 will be Dimarco's last day at the BI. He has come so far these past (nearly) 2 years thanks to the children's college. Come September he will be attending our home school in Kitchener. I was a bit worried after hearing many horror stories about the school board and special needs children, IPRC's, IEP's and the constant struggles between parents and the school system. My home school has agreed to come visit Dimarco at the BI. There will be 2 board staff members and 2 school staff members (EA and next years teacher). My home school has also welcomed the BI to come visit with DImarco as part of his transition process. What a great way to start off our journey! It's nice to see such co-operation..I'm feeling very optimistic and proud of my home school. I'm so blessed to have the Behaviour Institute guiding us. I feel like Dimarco has the best start possible with the BI, our home school and myself in his corner... :) The BI has also developed a series of classes designed for EA's, teachers and parents. Participants will be trained in ABA-based supported inclusion of students with autism in general education classrooms. You can visit www.behaviourinstitute.com to get more details if your interested. I'm hoping Dimarco's EA and teacher will take advantage of this great educational opportunity!
Here's to hoping all other parents of ASD children are also 'pleasantly surprised'....it's time to see some possitivity and co-operation between parents and the school system :) I would love to hear some more possitive experiences ;)

Wishing Sebastian a great 6th birthday :)

Final Exam

This past Tuesday was the final exam for the Geneva course I've been attending. It was quick, painless ;), and a pretty good summary of the course information. What was even better, was the hour or so spent afterwards enjoying a cup of apple cinnamine tea! These wonderfully kind and patient ladies really made my day. It is a rare occation to go out for tea and talk "grown up"! I feel a sense of ease now with regards to Dimarco starting grade 1 in the school board. Hopefully is will be lucky enough to be paired up with a great support person. If his supports are anything like the ladies I shared a cup of tea with...then let the good times roll:)

I'm Back :)

Well it was an interesting Tuesday night. I went to class and I had a mild breakdown..I didn't realize how difficult the class would be for me. I'm the only parent student and therefore am using my son in all of the assignments. I'm picking out the 'autism' in him. I hate that! The facilitator is an amazing woman. Her nephew has Aspergers, so she has been touched personally by it and it is very easy to see her passion about helping this population. Shes very intuitive! I try to block out stories about bad experiences when they are being shared in class. Some of the stories and issues many of the front line staff deal with, scares me. I'm not ready to hear them yet. I cover my ears and doodle on a piece of paper, trying desperatly not to activly listen to such stories. She noticed this and was so sweet to call me on my cell as I was driving home to make sure I was ok. Our kids are so lucky to have such a person on their side! Next week is the final exam, I feel pretty confident about the material being tested so I'm not to stresses out about it.
I spent the remainder of last night and the early part of today in the hospital with my dad. Mr. do it yourself, fell off a ladder stumbled to get his ballance, fell on his lower back and slammed the back of his head with full force on the garage door. It was frightening! I took him to the hospital immidiately. He was dizzy, nausous and felt extream pressure in the frontal part of his head. We still had to wait 5 hours in the ER. I thought head trauma would be looked after immidiately (I WAS WRONG)! He's feeling a lot better now. He had to be woken up during the night, so i called him at 4:00am, and he said he was feeling much better...thank God.
TO DO LIST>>>get dad a helmet for do it yourself projects around the house ;)

Dimarco and Supplements

With the help and guidance of Dr. Gannage(DAN) of Markham (300 Main St. N. 905-294-2335), we've come up with a good medium of vitamins and supplements for Dimarco. Currently he is on a GF diet. 10mg Zinc, 25mcg Selenium, 100mg Vit C, 100mg Taurine, 150mg TMG, 75mg/5ml B6 in Methocel 2x/day. 800mcg/ml Methylcobalamin in Emu oil, 300mg/ml Glutathione in VC Base, these are both topical creams that I apply once a day. He is also taking cod liver oil, colostrum, a digestive aid enzyme called M5+, probiotics, Calcium, Magnesium and Vit. D. We had urine analysis done and results showed high levels of Mercury, arsenic and lead. I have a couple different chelators but I'm still a bit hesitant to use them.
In my opinion ABA is the therapy responsible for the majority of Dimarcos success. I would not trade his ABA for any of the supplements I've mentioned above! I use them to support his health and well being and would never replace ABA for any biomedical intervention.

Autism and My Guilt

I don't know whether or not other mothers feel this way, but I can't shake off this overwhelming feeling of guilt. No one knows what causes autism, the current theory is part genetic with an environmental trigger.....I can't help but to stay awake for hours thinking of possible scenarios as to how autism came into our lives. I've examined my prenatal diet. I craved tuna and not just a couple cans a week, but an unusual amount of tuna while I was pregnant with him (high levels of mercury in tuna). There were days during my pregnancy that I forgot to take my prenatal vitamins. I was on depo provera for an extended period of time prior to conceiving Dimarco without knowing long term side effects (to date studies show a loss in bone density if used for an extended period of time). I fell twice when I was pregnant with him, once when i was walking to the mailbox (i was quick to turn my body and land on my lower back) and another time because my blood sugar levels were low and i fell to my knees while my vision began to darken just before dizziness kicked in.
I've picked fights with my husband trying to blame him so as to take away from the guilt I was feeling! Maybe my genes are bad. Maybe I chose the wrong person to be the father of my children because maybe his genes are bad!!! This sound so ridiculous when I'm typing it, but these are the thoughts that preoccupy me 24/7. I allowed Dimarco to suffer through 33 vaccines (mix of singles and cocktails)by age 2, without even giving it a second thought. Just after he turned 1, I went back to work full time leaving him with my parents and very little social interaction with other children his age. I nursed him for only 6 months, maybe I should have nursed him longer.
Its odd, I think that the guilt I'm feeling is the very thing that keeps me motivated to try anything and everything that may help him.
My ultimate goal is to provide him with a happy, healthy life! When I die and have to stand before God and answer the question...Do you have any regrets...I want to be able to answer with an open and honest heart, NO! I will do anything that doesn't harm Dimarco if I feel it will help. I will try anything at least once if it will not harm him, just so that I am able to sleep at night and know that I'm doing everything possible to help him. I want to be able to say that if i didn't know something I researched it. If someone said something worked to better the life of their ASD child, I tried it. I want to die knowing that I didn't leave any stone unturned in my journey of a life! When it comes right down to it, referring to Erikson's final stage of life (integrity vs despair) I choose integrity, no regrets!

TOO CUTE

Dimarco was upstairs in his room watching the Monsters Inc. movie. I slipped it in the VCR, while I went downstairs to cook spaghetti and meat balls...at his request. Dinner was ready, so I went upstairs to interrupt his video, which he didn't seem to mind (much to my surprise). We got down stairs and i picked him up and squeezed him and told him I missed him so much...he looked at me kind of confused and said word for word "Mommy, i'm in the house"....lol...my heart skipped a beat. He had made the connection that probably most kids would have....he must have been thinking...what the heck is she talking about, I'm here home with her....how could she miss me????TOO CUTE!!! One of many breath taking moments he has already given me :) I'm so gratful.

A little calculation

Just an interesting thing I was doing last night. I couldn't sleep last night (as usual), so i decided to calculate the number of waking hours I see my husband in a week. 15 1/2 hours a week (not including sleep time) that i see my husband. Of these 15 1/2 hours, we are present in the same house most likely getting things done with the kids, house work, home work, paying bills, talking about bills or eating. 15 1/2 hours a week??? Wow, I wonder if this is typical of other families. Perhaps, could be a factor in the unbelievable 80% divorce rate in families of autistic children. It would be interesting to see if there is a correlation between the # of hours parents spend together (just being present or engaged) and the number of divorces.

VICTORY

Last nights class was refreshing. I learnt some useful behavioural techniques to use with Dimarco. We were driving home today and I wanted to go a different route. Dimarco has become obsessed with the same route. If i deviate from it, he will take off his boot and throw it at me in the car. As you may imagine, this is quite distracting when I'm driving on the 401. Usually, I will just drive a differnt way home, hoping he doesn't notice or has overcome this obsession. Today I warned him that i was going to drive home a differnt way. We were at the first Cambridge exit when I warned him. Guess what....to my absolute surprise, he said...ok mommy, I like something different!!!! WOOOW....VICTORY :) Lets see if it works tomorrow ;)
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HOME ALONE

hello, hello, on this glorious cloudy day:) It's about 10am . My dad drove Dimarco to school today, so I get a chance to get my home organized. I still had to get up at 5am and get Dimarco ready for my dad to pick him up at 6am. I slept for about another hour, before I got up at 7am to get Michaela ready for school. My husband has just left to work and I'm home alone finally. :)
So my plan for the day....take a shower, lock the door , rinse and repeat lol :). I've got about 3 loads of laundry to do. I have my class tonight and i need to get my assignment completed. I'm almost done, i just have to proof read and correct. I'll leave Kitchener at about 2:30 to get to Brampton for my class at 4:30. Driving on the 401 always scares me. I never know how traffic will be, that's why I leave so early..just in case..the 410 in Brampton is crazy busy too. Here's to hoping that today's class goes better than last Tuesdays class. Wishing you all a great day. Smiles, Tanny.

Marriage and Autism

Marriage is tough enough without the added stresses of autism! I've talked with several friends who are struggling in their marriage. I'm not here to bash fathers of autistic kids, I know their are many who do such a great job and are so involved in their children's therapies, school and extracurricular activities. However, my reality is far from this. I struggle daily. Work wise, I've had to considerably reduced my hours. We argue because he feels he's taking on all the financial stresses at home....and I feel he's not involved in our (mine and the kids) lives at all....these are our biggest issues. He has to work more hours because of our situation, and I'm left to do everything else on my own. (Thank God for my dad and the BI who have helped so much with Dimarco. Without them, I don't know where I would be right now). I drive my son to Toronto from Kitchener daily to attend his amazing school. In the year and 1/2 we've been attending the BI, my husband has come with me twice. I feel unappreciated, overworked and stressed. Maryna and I were having a discussion about this very topic and she brought up something i never really thought about, but fits perfectly. My life has been turned upside down because of Autism. My values, priorities and perspectives on life have completely changed. Yet the world and people around me have remained the same. Honestly, if i look deep enough, I feel a sort of resentment towords my husband. He has no clue of what is going on in my life. His life remains the same. Go to work, come home, do nothing, eat, watch TV and go to bed. His dinner is made, clothes washed, children entertained and happy....he has nothing to worry about. I get upset when i see him sleeping and I'm up stressing about my sons future. Maybe, I'm selfish! I don't know, I just wish he was there with me at meetings and classes and soccer games. I wish he was there interacting with the kids and taking them out, while I take a bath with the door locked and have time to 'repeat if desired'! I think that often times, it's the mother of a special needs child who gives 110% of herself to making her child better. I've gained 30lbs since my sons diagnosis, i walk around wearing the same and only 4 pairs of black pants that I own, 3 inch roots and an unwaxed mustache loool. I look about 10 years older then what i am, I feel about 20 years older! Maybe my marriage problems are there because I fail to take care of myself!........... feel free to let me know I'm not the only one :) it will make me feel better :)....gonna book a hair appointment now LOL ...until next time .....CHEERS

In response to "tooautistic"

Tooautistic's son was too autistic to continue receiving his funding and my son Dimarco wasn't autistic enough to receive funding. I still can't wrap my mind around this. I don't get it. I can't understand it no matter what perspective i try to take. During my sons original assessment by Erinoak, his eligibility to receive funding was undetermined. They told me that they will reassess him in a year to determine eligibility again. At that time, he was in the 1st percentile in most areas tested! Again, another mind boggling decision. 1st percentile...ok...so...that means that in comparison to his peers, Dimarco is in developmental trouble, however, his "eligibility" for funding was being questioned. During the year we waited, I was fortunate enough to have him enrolled at the BI children's college where using an ABA approach, he learned how to eat, talk in sentences, socialize, write his name, spell words, read and tell me he loves me. Finally the year end mark had arrived and the reassessment was done and guess what, he was not eligible. He was not autistic enough! Because of the very therapy they were questioning, my son had gained too many skills..This is a big LOL. How could i do nothing and just wait while valuable time fly by. But we began ABA/ IBI and because Dimarco benefited from it so much, we didn't get the funding so desperately needed to continue the therapy. They (assessors who determine eligibility) tell the parent that IBI/ABA doesn't work for every child. "They" say that the assessment is done to determine eligibility...."eligibility" would mean that IBI/ABA has a higher percentage of helping the eligible child then that of the ineligible child???? Is this not what our goal is? Get this kids able to communicate by any means. So if the therapy works, stop it, don't continue it????? If anyone understands this please explain it to me. What i have to say is 'autism is autism is autism'. ABA is the only proven approach to help these children. Actually not only for our children, ABA would benefit any child! I read somewhere, i think it was a post on a bulletin board at the BI, but I can't say for sure..."If our kids can't learn the way we teach, we need to change the way we teach our kids" simple, plain and easy to understand!

THis blogging stuff is actually pretty good cheap therapy lol. OK so tomorrow I will comment on EFFECTS OF AUTISM ON MY MARRIAGE. I know I'm probably not alone!

Tuesday night class

This is day 2 of my blogging experience. I was up last night thinking of what I should write about today. I've got a million things on my mind, but I should not overwhelm the 'blog reader' lol. ok so, I will talk about my Tuesday night class. I'm enrolled in one of Geneva's centre's courses. The majority of people enrolled in this particular class are professionals who work with autistic kids or adults in school or group home settings. I was feeling awful after last Tuesdays class. I suffered a major panic attack on my drive home. I had to stop the car to catch my breath. I started to get a migraine and i was feeling physically sick. I got home and threw up as soon as i got threw the door. The last time I experienced a panic attack was after my first and only support group meeting with autism Ontario.
ok .... so lets talk about the background. The topic on Tuesday night was stress and anxiety that our autistic kids and adults face daily. One lady shared her experience with an autistic man she was working with. To make a long story short, she described how the man was distressed, became loud and the police had to be called. I believe they were in a mall during this episode. The police got there and then used a taser on him twice because he was "not cooperating".
I began to think about Dimarco's future. How will others treat him, will he be able to deal with all of his sensory issues? In a similar situation, would the same action be taken on him by authorities? I had an overwhelming feeling of distress, I felt my heart sink and i began to panic. I don't know what to expect with Dimarco! I visualize him attending school and having friends, growing up and bringing home a girlfriend, but is that just my denial / coping mechanism? He's only 5 but I have such a hopeful feeling about his future. He's enrolled in the best school available (BI children's college), receiving the best therapy with the best people possible there. Perhaps in 10 years, society will truly understand autism and we as parents will have a better understanding of what early intervention promises for our kids.
I guess we all have our moments. It's times like these that good friends (maryna) and family (daisy and dad) put everything into perspective.
THANK YOU

My First Post

I'm sitting here with a great friend...you fellow bloggers will know her as Maryna from www.tooautistic.com. We've just eaten from Williams Breakfast Platter...I stole all of the scrambles eggs :). What are we talking about? Like most of our conversations, they start off with talking about onion sandwiches but almost always end up in Autism.