It's Been Three Years

Three years ago from today, I nervously entered the local health unit with an unsettled feeling in my stomach. This is what I wrote when the day was done: BLOG POST FROM MAY 9, 2011. 

So how has she changed in three years?

• Her speech development continues to grow at a rate and pace that is suited for her.
• She is progressing forward, just slower than a typical developing child.
• Last year she had a speech assessment which placed her at a 3 year old level of speech. We have another assessment booked for June. 
• She chatters all day long and her pretend play is blossoming nicely. After spending a consistent amount of time with my friend (who does my respite) and her little girl, Sarah is learning how to play and interact with others as well. These times are allowing Sarah to listen, learn new things and share her own ideas and opinions. It's been a great opportunity for her to be with someone her age while still in the comfort of a home, which I appreciate.

How have I changed in three years?

• Although I have had many discouraging days, for the most part, I am accepting of her delays. I have times of frustration and fear but pushing those negative thoughts away is easier.
• My faith in God has grown by leaps and bounds. I had so many days and nights of doubts and tears which have brought me to my knees in submission to Christ. He has shown me through his Word and the wisdom of friends that she was created just the way He wanted her to be.
• I have learned how to become a stronger advocate for Sarah. I have fought for respite hours. I have pushed for answers. I have learned to be strong and keep looking for support.
• I no longer feel dreadful all the time. I know that Sarah will keep growing at her own rate and that will mean the gap between her and her peers will get bigger. I am still learning to be okay with and accept it as our "normal" and although some days are tougher than others, I'm doing better than I ever have been. 

What now? What's next?

• Currently, Sarah is registered for "grade one" this fall. I'll use that term loosely because it's only by law that she's enrolled and clearly she is not going to be doing what "typical" grade ones will be. 
• When I think that she's about 3.5-4 years old developmentally, we may start on some early preschool stuff but that's not a huge concern of mine. She is learning what she needs to at this time and I'm satisfied with that.
• I will continue to keep her at home. I do not believe that putting her in a room with 20-25 other developmentally average kids will benefit her at this time (even with a full time aid which would be necessary). Also, I've homeschooled all of my other kids successfully, why would Sarah be any different?
• I'm hoping that once the school year begins this fall, we will find supports and access to other help as we see is needed. It's been sort of a lonely year since we had to stop our early intervention and the support came to a close. We've sort of just let things be for the year with Sarah's only focus is on play. 

I can remember this visit as the beginning of a new stage of life for us. Little did we know what we were in for after that. The date of the initial developmental diagnosis is a bit later in May... I'll blog about it then. 

 "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Philippians 4:6-7

A Type of Respite

This week, my older kids have been on spring break. A couple months ago, I was gifted with passes for the West Edmonton Mall World Water Park from a family member. I had saved them for this week because I knew most other schools were back in session, having had their break already. Last year, we did it and we took Sarah. I don't think it was good or bad, just different and a little tougher. She is overwhelmed by the noises and chaos and gets cold quickly. It also meant that someone had to be with her at all times so either myself, Joshua or Andrea ended up in the shallow end or kiddie pools. Sarah also doesn't like her head or face wet which proved to be difficult in a water park setting as well. When this week rolled around, after a lot of thought and consideration, I knew it would be in her best interest if she didn't come. Instead, she spent five busy hours playing with Grandma!

It really tugged at my heart that it was best that she didn't come. So often, I look forward to introducing things like this to my kids and I desire full inclusion, especially as a homeschooler. I wanted her to come. I wanted to share the experience with her and I wanted her to enjoy it. But in the very same breath, I wanted my older three kids to have as much fun as possible and that couldn't happen when one of us had to watch Sarah.

When we arrived, I'll admit it took me a while to fully enjoy myself. Once the kids and I were up to our necks in waves and enjoying each other immensely, I knew I made the right decision. Joshua and I went on a few slides together and the connections with each other that I saw in my older three kids filled my heart with joy. Andrea and Joshua kept a close eye on Arianna and made sure no one bowled her over with a tube. We shared some snacks and drinks together and we ended our time with Joshua and I taking a ride on the zip line!

I am so blessed by Doug's mom who shared an entire afternoon with Sarah, playing in puddles, eating snacks and watching preschool cartoons. I think if she came, it would have been alright but probably not as carefree feeling as it was. It allowed me to fully embrace my older three, and giving them the opportunity to do something without being held back by Sarah and her needs. I know how important it is to do things like this once in a while so that they can enjoy being who they are.

 ** Picture courtesy of Grandma**

"Sarah splashed in grandmas puddle for about ten minutes ...

till the boots overflowed, and she announced she was now cold!"

Day One of School, 2013/2014

Well, I survived. I was initially a little worried because Joshua's way of schooling is taking a 180* turn. He's going from traditional to aligned in three subjects. And he's doing them online. I think it'll be a good year of transition as he considers going to high school in grade 10 or 11. I'm not rushing him by any means but I do want him ready if he choses that way.

Andrea did almost all her stuff on her own today. She's become very independent and I'm thinking of some online next year for her as well.

Arianna did what I figured she'd do for grade 4. A little bit of writing. A little vocabulary and a touch of math. She played a lot with Sarah as well which was a nice help this afternoon.

Sarah spent her morning with "a best ever Sh'eem" who is an amazing blessing to me and my family. Shaneen loves Sarah and Sarah had a great time playing with and entertaining Shaneen.

I think overall, it was a good first day. It always takes us some time to get into the groove of things and I know that everything will fall into place over time.

Happy first day of school!

Dreams and Detours

For nine months, I waited in delighted expectation for the arrival of our last baby. Like any mom, I had hopes and dreams for this little one. We didn't know by ultrasound but something in me thought the life inside of me was a girl. My instinct was right! I also figured I'd do everything the same for her as I did with the other three kids. Why would anything be different?

When Sarah reached all her milestones late, I really thought nothing of it. Why should she crawl when she had three doting siblings to answer her every beck and call? The tiniest whimper would have her loved ones rushing to aid her. Same thing for walking. Crawling worked fine and she was so little that we all enjoyed carting her around. The fact that she didn't walk till almost 19 months didn't really concern me at the time.

In my ideal world, my baby was going to eat wholesome, nutritious food. I cooked, pureed and froze oodles of ice cube sized portions of the best stuff. And she would have none of it. Despite my best laid plans, my baby was not going to eat vegetables or meat. End. Of. Discussion. I tried and I still do but her diet is rich in carbs, high in {some} fruits and she receives her protein through peanut butter sandwiches. Sometimes she'll eat a hot dog if she's in the mood. I do wonder what people must think of me when I end up explaining her diet. But I can't force chicken or beef into her. You can lead a horse to water but you can't make it drink.

Cheerios are still a favorite.

Of course she LOVES cake!

In the summer of 2011, I thought Sarah was on the road to being potty trained. Because in my ideal world, my kids are toilet trained between the ages of 2 & 3. Why should this last one be any different. I had bought the potties, I bought panties and treats. I thought I was on a roll. And she was until she got sick. She came down with a flu, I ended up going back to diapers for what I had thought would be a temporary thing and all my efforts were... flushed away. Now the mere mention of using it brings her to tears and she is terrified of washrooms.

Like any other parent out there, I had dreams of blissfully sleeping through the night by the time my baby was... 6 months or even a year. I hadn't had a good 'sleeper' till this point but there's always a hope right? I hoped and hoped and hoped. For months which has now turned into years. At one point Sarah was sleeping through the night, in her own bed right beside Arianna. She'd eagerly wake up for a few chocolate chips as a reward and I thought I hit the motherlode. I had successfully taught all four of my children to sleep through the night! And then the same flu bug that kiboshed my potty training efforts also affected her sleep. And to date, I'm sure she has only slept through the night, in her own bed a handful of times. I am not a cry it out parent and Doug and I have always responded to our kids when they cry in the night... even the big ones if they have bad dreams. I don't know what her "issue" is but she can't {or won't} sleep through the night any more. She can start in her own bed with Arianna but will end up beside me at some point. She needs to feel me close and be close to me. Believe me, I have tried.

I wanted to write this post because so often I feel like I have failed a parenting course. I have a diapered, not-sleeping-through-the-night, carbaolic child. Seldom do I think "oh yes, this is the road I had planned", but rather am frequently reminded that it's not MY plan. I have to remind myself of this time and time again. Yes, Sarah is parented differently than the other kids, but she's a different kid. Entirely. I also have to remember that I am doing the best for her that I can. And at the end of the day when her long wispy lashes graze her cheeks, I am so overwhelmed with love for her. Do I wish she was a better eater? Sure. Do I think it would be nice to be done with diapers? Absolutely. Would I love to consistently sleep uninterrupted? Of course! But this is not the course for now. I'm on a detour. And it's taking me to a whole new wonderful world. Something I've been saying to myself (sometimes out loud) is that I need to focus on the journey and not worry about the destination. I am thankful for financial assistance we receive for the diapers. I am grateful that she's still tiny and that we have a king sized bed. Also that Doug sleeps deep enough that she doesn't bother his sleep unless she's dreaming of kick boxing.

I still have a constant fear of being judged. That people will look at me and quietly say to themselves "she really doesn't deserve financial help" or "Sarah is so easy going, why does she need respite" or even "she home schools, that can't be good for her kids".  I'll admit, I resisted the help for quite a while. For almost a year, I was given 4 hours a month for respite services and didn't use any of them. Not one hour. That's changed but it took time for me to relax and enjoy myself while someone else watched her. I've been blessed by two people who love her and care for her on a regular basis during the month ... just enough time for me to do some cleaning, laundry or running around without worrying about where she is or if she's getting into something. I had idealistic dreams, God sent me on a detour that has taught me more in 5 years than I have learned in my life. I'm focusing on our journey... the destination isn't important.

Thanks for listening to me today. This blog post has been in my 'drafts' folder for quite a while I finally gained the courage to share my thoughts.

I am SO blessed! What an amazing little girlie I have!

A Few Things That Parents of Special Needs Kids Shouldn't Feel Guilty About

I read a very encouraging blog this morning and with her permission, I'm blog lifting from her post. I’ve mixed her ideas with some of my own as well as some direct quotes from her. You can read more of her stuff HERE.

• Taking a break. I think for the most part, Sarah is pretty easy to take care of but she does require a fair amount of one on one attention and lots of it. She needs to be watched constantly as she lacks the judgement to be safe or to make appropriate decisions. I have found great comfort in the respite care that I've found for her and the time allows me to do other things that I might not otherwise be able to. This was a huge step for me to overcome as I tend to think I can do it all. Thankful for the wisdom of someone who encouraged me to take time for myself.

• Thinking that you "caused" your child's disabilities. I'll admit, this one touches close to home. I know in my heart that nothing I did caused Sarah’s delays and that the suspected oxygen deprivation early in my pregnancy wasn’t my fault. I play and replay in my mind all the suspects from the pregnancy and even beyond, wondering if anything I did differently would have changed. Probably not. 

• Giving up on redirecting or reminding your child. Whether it's your child's persistent banging of knees against the kitchen table or humming, at times you run out of strength to say, "Stop!" Go on, flee to another room or let your significant other deal. You can't always be on.” ~Ellen~

• Letting her zone out to the TV/iPad. I don’t really want her to spent insane amount of time in front of a screen but sometimes it’s necessary for survival. Mine and hers. 

• Spilling to your friends. If they are good friends, they'll be there to listen to you angst about your child and give you perspective, just as you are there for them. ~Ellen

• Writing about your child with special needs. I write so that I have a record of what I’ve done or have yet to do. It’s therapeutic for me to do it like this and even if I encourage one person, then I’ve met my goal. I also write for awareness of delays, microcephaly and cerebral palsy. I will admit though, sometimes I wonder if people really want to hear more or not...