Friday, September 14, 2012

Caffeinated Randomness - What a week!


Wow, I'm finally catching my breath.  Ok that really is a lie because I'm thinking about my schedule over the next week and am feeling just as overwhelmed by it as I have this past week.  This was been one of those weeks.  I need to apologize to everyone for not visiting last week.  I truly have been a bad host.  

Last Friday I spent the entire day in meetings regarding Middleman for his Fall ISP.  For those not in the special needs lingo that's Individual Service Plan.  We also added some time to discuss Sam's developmental and PUF (Program Unit Funding) program for this fall.  Just as I was able to sit down it was time to get the kids from school and then get the house ready for my in laws to come for the weekend so that we could go watch the Nation's Cup horse jumping competition.  I finally had some time to myself to veg out after everyone went to bed so I watched Hunger Games and stayed up way to late.  

Saturday was spent at the horse jumping venue.  We had really good seats and were able to see most of the major jumps.  The only sad thing was that the German team took the cup.  We were cheering the Canadian team and of course the Holland.  My in laws are from Holland.  However, a secret part of me was cheering for the Irish team as that's my heritage (they came in second).  It was a great competition.  Lots of ohs and ahs.  

Sunday I will admit that I spent the afternoon chilling.  I chilled to Sense and Sensibility with a nice pot of tea.  I realized while watching the Emma Thompson version that she was way to old to play the part she did.  It is a great version, but you can tell how much older she is compared to Kate Winslet.   It was a nice afternoon.  

Monday was a roller coaster day.  I was preping for a speech I was giving at a fundraiser for our local advocacy group.  I was already stressed when I received some bad news about Sam's assessment.  We had received a letter of diagnosis from our pediatrician so that we could get some developmental assistance.  Because of that letter they don't want to do the assessments.  However, without those assessments, we can't obtain further funding.  It's a vicious circle.  After breathing a bit and talking with our social worker we were able to come up with another solution so that we can obtain the further funding.    

After Monday, the week is a total blur.  I have been so on the go that I have barely been on the computer and barely watched tv.  This has just shown me that I need to think about what I have been doing lately and set up some priorities.  I am such a yes person that I need to become a no person to maintain my sanity.  There is one thing that I need to say no to that I am a little upset about only because I know the group will be disappointed.  However, when I think about telling them that I am not going to be able to do it, I am at peace.  God is leading me and telling me where I should be going and where I shouldn't.  I just need to be more in tune to Him to make sure that my plans are part of His plans.  Sometimes that means that I am going to have to pass on things that I really want to do.  It's disappointing, but He has greater things for me than the things that I want. 

I'm going to leave you with my speech that I gave on Monday evening.  It went really well and I have been asked to speak at the next fundraiser.   I think I might just have to take this show on the road.

Ladies and gentleman Thank you for coming. I have been asked to speak to you this evening about my family. My name is Michelle. I am a 38 year old stay at home mom. I have been married for almost 12 years to my husband, Leroy.  

I would like to introduce you to my 3 children. My daughter, Nicole, who is 9 years old. She is a social butterfly who is kind, compassionate and smart. She currently wants to be a marine biologist when she grows up to work with Killer Whales who are actually dolphins, so she tells me. My oldest son Thomas, aka Tman, is 6. He is playful and loving. He loves puzzles and was on the computer when he was 2 1/2. He currently wants to be a paleontologist when he grows up or a Jedi, which ever works out. Finally we have the baby of the family, Samuel. He is 3 years old and as all of you with 3 year old little men know, is a handful. He is a ball of energy which keeps going and going until he drops. He is very inquisitive. My money is on him being in the NFL when he grows up. From the outside my kids look just like any other kids. We look like any other family, however we “won” the lottery. 1 in 88 children will be diagnosed with autism and 15 to 20 percent of siblings will also receive the same diagnosis. Both my sons have received this diagnosis within a year of each other.

Thomas was diagnosed with autism two weeks before his 5th birthday while we were still living in Saskatchewan. We had some signs. He was a bit fussy as a baby – hard to console. He did not walk until he was 20 months and he spoke only about 3-5 words when he was 3. He, however, was so cuddly and just loved up everyone within his reach that the thought of autism never crossed our minds. When we questioned our doctor he said not to worry, he'll catch up. His sister was so far ahead of all the scales that we just had to realize Thomas is behind on them. We started speech therapy and our therapist at first thought he was deaf. After 3 hearing appointments we ruled that out. At his 4 year check up, he was crying and so was I as the doctor and our other children looked on in shock and awe. We were referred to a pediatrician who subsequently referred us to the Kinsmen Development Centre in Saskatoon. At no time was the word Autism ever used. After 6 months of waiting and doing research, we began to utter the word ourselves. We also began to search for help, but felt like we were getting the run around between agencies. We began to feel alone and helpless.

We obtained an assessment day almost 1 year from referral. This was obtain sooner due to calling our MLA's office. We were being told that the assessment probably wouldn't happen until 18 months from referral date. Without this assessment any services we could access were out of reach. We researched a provincial advocacy group who recommended if you were able to leave the province to do so. We made the decision to move back to Alberta after having left 4 years before. Alberta had better services and programs to assist not just the children with autism, but also the families. We knew this was something we would not get in Saskatchewan. If we stayed we would be on our own emotionally and financially. Thomas received his diagnosis a few days after Sam's 2nd birthday and a few weeks prior to purchasing our new home in Okotoks.

Around this time we also began to see signs in Sam. The grabbing of the ears and the OCD behaviour. Unlike Thomas though, Sam has no speech at all. He is a great mimicry, but has no no or very little comprehension of the words he says. He is also a runner – meaning he has no sense of boundaries and will run away from us within seconds. Add that to 1 very inquisitive 3 year old and you have 2 extremely stressed and tired parents. Sam received his diagnosis this last May.

Thomas requires regular speech, physio, occupational and behavioural therapies. This has required us to have an aide assist us at home. We are just entering a similar journey with Sam. My calendar is filled with appointments or therapy times for each of the boys. I always say we are playing catch up with Thomas and being proactive with Sam. This is our new normal.

Almost a year and a half ago, we left our small community and very close friends and supports for the boys. We left knowing it was the best for the boys and would be hard on the rest of us. We didn't know what to do or where to start. Just before moving back, I contacted an old neighbour from Okotoks whose son has autism. She told me to apply for FSCD and contact SNAPs. I called SNAPS right away and spoke with Orvella. She answered all my questions, reminded me about FSCD and told me to call her once we were settled.

About a month after moving we called SNAPS. Orvella came to the house with a package of information of all the services available to assist us and the boys. She let us know that SNAPS was there to support and guide us. That if we needed them at meetings they would be there. After this meeting it became clear that we had entered a whole new world that was even more overwhelming than we thought. However, this time we knew were were not alone. We have a group who is there for us when we need it. We've learned a new language: FSCD, IEP, ISP, CDC, inclusion, advocate. SNAPS has become our interpreter through this new world. Sometimes they've even had to give us a push when we needed it. They've been there when we have simple questions and been there when it was tough. They have had our back when we didn't think anyone would. They have been the shoulder to cry one when there didn't seem any hope. They have also been there in the good times. The times we thought would never happen. Thomas became a Jedi pad-wan at Disneyland this year, getting up on a stage and interacting with others. Something we didn't think he'd be able to do. One of the first people to cheer this on via Facebook was Orvella.

I've joined a playgroup and met mothers who face similar struggles to me. “Normal” friends can try to sympathize and help just as family tries, but until you walk this road you have no idea how overwhelming, stressful, hard, rewarding, fun and worth it, it is. Orvella told me about this group months before at our initial meeting and kept reminding me of it every time I saw her before I actually went. I still kick myself for not listening. Everyone of those mothers knows and respects SNAPs. We all use their services and all rely on them. When we're told no, the first place we look is SNAPs who tells us yes!

Sibshops have blessed Nicole in allowing her an outlet to discuss her feelings and frustrations of being a sibling of special needs siblings. She can see that she's not the only one living this life. That it's OK to be angry and jealous. It's OK to ask for time to herself with mom and dad. She is the best sister to our boys. She is their number one interpreter and number one fan. She is also their little warrior when the world hurts them. She'll be here and advocating for them when we are no longer able. This is one of our worries, how this has affected her. I know that she won't be alone though, just as we aren't. SNAPs will be here for her just as it is for us. Knowing her, she'll be running it then. Nicole Slomp, Executive Director. Don't you like that ring?
 I hope you all have had a good week.  I can't wait to sit down Saturday morning with my coffee and read everyone's posts.  Finally one day that I can be a little bit of a couch potatoe.

What's your week look like?  What have you had to give up because God is leading you to?  Come link up with the other Java Junkies this week.


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Alberta, Canada
I'm a 39 year old (oh yeah I'm telling you my age) Stay at Home mom. A former Bad Girl now reformed sinner, I'm married to my Y2K guy and raising 3 great children from God. Proudly Canadian, however, missing the West Coast, I currently live in the prairies watching the farmers fields produce as I learn how God produces the fruits in me.

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