Lost In the Prairies.....Found by God

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

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 5^th 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 2^nd 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.

2. 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.

3. 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. 

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 5^th 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 2^nd 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.

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.

While we wait for Sam's diagnositic assessment for ASD, he is becoming a little Dictator.  I'm going to start calling him Il Duce soon.  He may not be able to talk but makes it very plain what he wants and likes and what the consequences are when he doesn't get them. 

He knows that we will encounter trials and hardships, but He has already overcome them, promising rest, guidance and wisdom when we need it.

Our Advocate—Jesus—longs to help you. I know, because He helped me, and He helped my son. 

These words screamed out to me.  I knew immediately what had been missing for a while in my life - Jesus.  It's not that I had turned from Him.  I have been getting up and studying his word daily through the Good Morning Girls study.  What's been missing is prayer?  I've been getting to know Him more and more, but I have put Him within arms reach and still expect Him to be there for me in the messiness.  How can I expect to receive peace and comfort when I don't ask Him for it.  It seems lately I only talk to Him in crisis, when I should really be having an ongoing conversation with Him regarding every area in my life. 

 

The Original Photo

The above photo was the one taken by my dear Bible Babe, Cherie.  It was also the one voted over 6 others.   I sent in the photo and waited.  I received this:

The Make Over