Monday, October 22, 2012

Messy Mondays - The Speech

Messy Mondays where I share what God has been showing me through the messiness of life. It is my personal belief that this walk isn't clean and crisp and straight or narrow. It's wide and twisted and mucky and messy. It's about the ups and the downs, but through it all God is there with us
This week I am sharing the speech I gave at Church on Sunday as the Disability Advocate for our church and a parent of two exceptional boys with autism.  I know if you read Caffeinated Randomness that some of this speech will seem familiar.  I gave another version at a fundraiser for our advocacy group a month ago.  
Hi, for those that don't know me, I'm Michelle Slomp. I have been married to Leroy Slomp for 12 years. I am a stay at home mom, blogger, organizer, reader, wanna be crafter and no I am not dutch.

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. My oldest son Thomas is 6. He is playful and loving. He loves puzzles and has been on the computer since he was 2 1/2. Finally we have the baby of the family, Samuel. He is 3 years old. He is a ball of activity who has more energy than the Energizer Bunny. From the outside all my kids look just like any other kids. We look like the any other family. But we won the statistical lottery. 1 in 88 children will be diagnosed with autism (which some disagree would be more like 1 in 64 children). 15 to 20 percent of siblings will also receive the same diagnosis. Of 5 kids with autism, only 1 will be a girl. 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 living in Saskatchewan. We did have some signs. He was a bit fussy as a baby. He did not walk until he was 20 months and he spoke only about 3-5 words when he was 3. However, he 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. Nicole was so far ahead of all the scales that we just had to realize Thomas was 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. The doctor, Nicole and Sam watched us in shock and awe. We were immediately 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 felt alone and helpless.

We obtained an assessment day almost 1 year from referral. This was obtained sooner due to calling our MLA's office. We were 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 mimicker, but has no or very little comprehension of the words that 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.

Both the boys require regular speech, physio, occupational and behavioural therapies. My calendar is filled with appointments for meetings or therapy times. I always say we are playing catch up with Thomas and being proactive with Sam. We also have an addition to our family. We have an aide, Deanna, who comes in daily and works with each of the boys.

We don't just worry about the boys regarding this new journey we have, we also worry about Nicole and how this will affect her. She also has to make sacrifices because of her brothers. We have to allow and acknowledge her feelings of jealousy and anger. We have to allow for time to herself with just Mom and Dad, as well as time alone. One of our biggest concerns is how this will affect her when we are no longer here. What responsibilities she'll have for the boys. We want her to be her own person, but also be their advocate when we can't. She's already doing this at her age. She is an amazing sister. She is their number one fan and interpreter. She is not just their older sister but their best friend. She thinks more of them than herself.

There are times when we've been lost in this journey. We have grieved for lost dreams for each of our children. We have cried out why? We have yelled in anger. We have fallen to our knees in desperation. But God has given me these truths to cling to:
  1. Each of my children were “fearfully and wonderfully made”. God didn't make the boys autistic because of sin or punishment. Each of my children were created exactly as God would have them created. God makes no mistakes. He has a big plan. Each of my children are part of this great plan. He tells us His plans are good and I trust in this promise.
  1. I do not have the strength to bear this, but God does. I've heard it too many times that God gave me these boys because he knew how strong I was. I'm not. We aren't. No parent of a special needs child is. We are imperfect people. |We have the same concerns and dreams for our children, just as everybody else does. We aren't superhuman beings (although sometimes I wish I was). I often say I'm holding on to the last thread and that thread is called Jesus. Only through Him have I made it this far. Only through Him have walls that seemed impenetrable fallen like the walls of Jericho. In picking Thomas' team, I was told it would take months. I had it organized within a few weeks. God provided us with an aide who shares our faith and teachers who see my kids as kids not as autism. They too see the potential and celebrate the highs just as much as we do. I know this has nothing to do with Leroy or I, it's a God thing.
  1. Finally, Romans 5 verses 3 and 4, tells us “Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.” Everybody suffers from something. I don't consider my sons sufferers of autism. But they each face struggles that other parents take for granted. Ones, even we took for granted with Nicole. Just this week, we celebrated the fact that Sam could put his own boots on. We persevere through the web of agencies, funding, therapies and terms. We push through and see success. We embrace this success as it means hope. Autism is not curable. My boys will have autism for the rest of their lives, but we will not allow them to be defined by it.
Last year on Celebrity Apprentice they were doing an add for a special needs summer camp. The ad campaign that was suggested was to have some children playing on the floor with a wheelchair pushed to the side with the tag line “They don't see a difference, why do we.” I pray and I know that there will be a time that all are included. That everyone is truly welcomed for who they are no matter what.

I am linking up this week with the Soli Deo Gloria Sisterhood at Finding Heaven

2 comments:

Andi said...
This comment has been removed by the author.
Andi said...

That was beautifully said. Bless you for the realization of where your strength comes from. Remember, just as God chose these children FOR you, he chose YOU for them. Bless you and your little ones!

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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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