Respite Care

Sometimes the words flow easier than others.  Sometimes, the things I write and share with my readers is hard to do.  I've been asked why I blog and share publicly and I think my reasoning is that maybe my words will help, inspire or encourage someone.  Every so often I need encouraging as well and I find great amounts of support through this medium.  This blog post is a tough one and might not appear all that optimistic.  I've got to get it out there though.  It's my outlet and I'm just doing it.

Last week Sarah and I had our 4th last Early Intervention appointment with Wendy. That means there are only three more visits left.  Three more visits of support, help, advice and ideas.

I had posted a week or so ago about how much of a mess Sarah had gotten into while I was doing some school with the kids.  I had talked about this with Wendy and the idea of respite care came up.  I didn't think I would really ever need to require help like that.  I want to believe that I can do it all on my own.  I mean I'm the mom, I should be able to handle it all.

Wendy's thinking is to have someone come to the house for three hours a day, a few days a week to watch Sarah while I homeschool the older kids.  This would ensure Sarah's safety so I could get school done with the others.  They could receive my full attention and I wouldn't have to be thinking and wondering what she's possibly getting into.  What she can get into can be messy, dangerous or just plain trouble.

I have so many mixed feelings on this idea.  I'm a Mom.  I feel it makes me seem that I am weaker or like I can't handle it all.  This is such a new concept to me.  Any time someone has asked me about it, I've just brushed it off saying that Sarah is easy enough and I am doing fine on my own.  Wendy said it's exhausting to raise (and homeschool) four kids, one who needs extra care.

I'm scared of the {negative} opinions of others and what they might think.  I don't want to come across as weak or incapable.  Am I letting her down by not being able to care for her 100% of the time?  Will I be judged on my request for in-home help? This is something I never thought I'd need or even want.  I suppose didn't imagine that I would be a mom to a child that might benefit from respite care.  This is just plain tough.  All of it.

My daughter needs me, she depends on me and my love to bring the best to her life. I can only do the best I can to help her and provide all opportunities I can. Maybe this is one of them...

Today is Easter Sunday and I will remember the reason we celebrate the season. He HAS risen and I will thank Him for his sacrifice.  I will also thank Him for the amazing blessing that Sarah is and all that I can learn from her.

Sensory Processing Disorder (SPD)

What Sensory Processing Disorder (SPD) is?

“Sensory Processing Disorder is a neurological disorder that is like a virtual traffic jam in the brain. The information from all eight senses is misinterpreted which causes a child (person) to often act inappropriately.”

The Sensory Processing Disorder Foundation’s website says the following:

“Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.”

To get a better understanding of SPD, let’s break the SPDF’s definition down into a more consumable definition.

“…the way the nervous system receives messages…” — this is referring to the messages received (also known as ‘input’) from all eight senses and how they are conveyed to the brain through the nervous system. The brain is the key component to the nervous system, as that is where the ‘processing’ occurs. By ‘processing’, we are in very basic terms referring to whether or not the brain ‘understands’ those signals. When the brain misinterprets the meaning of those signals, and can’t process them appropriately, it leads to an inability to turn them into appropriate motor and behavior responses (also known as ‘output’). Example: If the ‘input’ isn’t understandable by the processing system then the ‘output’ becomes jumbled or non-traditional in nature.

“…appropriate motor and behavior responses…” – ‘appropriate’ here refers to the assumed way that a child should respond – if something is too loud, they should pull their ear back, if something is quiet, they shouldn’t scream it is too loud. The word ‘motor’ refers to a physical response – how your body moves as a result of the information from the brain, and then ‘behavior’ how the child continues to respond (over or under reactions). Example: Loud unexpected BOOM! Kid cringes and covers his ears (motor), then screams and runs away (behavior).

There are three types of Sensory Processing Disorders and formal definitions can be found here. Here is a summary of each type:

Type I: Sensory Modulation Disorder – These are the sensory avoiders or sensory seekers; their senses are under or over reactive (i.e. they avoid touch or sound or like to crash or jump or etc.).

Type II: Sensory Based Motor Disorder – This is where discrimination of the senses causes confusion, clumsiness and impacts gross and fine motor skills (i.e. crawling, walking, writing, sight, low muscle tones.).

Type III: Sensory Discrimination Disorder – This is where the senses become confused so it’s referred to as “discrimination”.  For example the body has a problem determining spacial awareness (movement and balance), differing pain from pleasure, hot and cold.  Also, sounds, smells and tastes can come across very different then they should to be interpreted by the brain."

**ALL information was taken directly from SPD Blogger Network and not from me.**

I think Sarah experiences all three types in some way or another.  It sure can make life interesting!  

I just wanted to put this information out there so that people might be able to understand why Sarah acts as she does sometimes.  I will do my best to help her cope but sometimes it's out of my control and there's nothing I can do. I'm still on a learning curve here and every day I find out something new about her.  She teaches me something all the time and being her mom is the most amazing thing that could have happened to me.

Encouraging Awareness

This afternoon I met my sister at Millenium Place which is a huge recreation center about 30 minutes away.  I didn't buy Sarah an admittance pass because she doesn't skate, and that's what the kids wanted to do.  We saw that the rink provided Chariot strollers with ski blades on instead of wheels.  I strapped Sarah and her cousin into one of these adapted strollers and they had a great time being on the ice with the others.  After all the kids came off the ice, Sarah indicated that she wanted to play in the play place for littler kids and so I went to the front desk to pay for her.  She has an opposition to wearing the required wristbands and I wasn't sure how it was going to work.  Her resistance to it has to do with the sensory processing disorder and her dislike for anything 'different'.  I approached the cashier and asked how I could pay for her without her needing to wear a band.  The lady just put the wristband on me and I wore it for Sarah.  She then offered me an additional band to try on Sarah when we got home.  She suggested that if it was put on her in a safe place like her house, she might be more willing.  The cashier then said her autistic niece prefers to wear them on her ankle and that it might work for Sarah too.

I was so encouraged by someone else who understood some of my concerns and was so willing to help me make it work.  

Daybook {03.23.13}

For Today: March 23, 2012

Outside my window... another 10-20 centimeters of snow has fallen this past week.  Sometimes I wonder if spring will ever arrive.

I am thinking... that I will begin spring cleaning next week!

I am thankful... for the week long visit Andrea was able to have with her friend from Toronto.  We've done a lot of fun things and I hope they made a bunch of memories to last a long time.

In the kitchen... Sarah is watching Curious George and its still pretty tidy from last night's clean up.

I am wearing... baggy pajama pants and an oversized shirt of Doug's.

I am creating... less clutter.  Everyday (it seems) I go through another room or space in the house to reduce the amount of *stuff* we have.

I am going... to do some wheat free (experiemental) baking today.

I am wondering...

I am reading... The Guardian by Nicolas Sparks and Little Women by Louisa May Alcott

I am hoping... to get back on the treadmill again.  Finding the time to take 20-30 minutes to myself seems so tough these days and I feel like I need to make my physical activity a priority.

I am looking forward to... a family dinner with my in law's this afternoon.  It's been a while since we've all been together.

I am learning... to be proactive, not reactive when dealing with the kids.  This can be a hard lesson for both sides sometimes.

Around the house... needs cleaning.  A lot of cleaning.

A favorite quote for today... "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." 
-- Albert Einstein

One of my favorite things... my Keurig that is ready and waiting to make that much anticipated cup of coffee for me every morning.  And the small children who snuggle in close to share it with me.

A few plans for the rest of the weekend... just the usual house cleaning, laundry kind of days.  We'll go to church tonight but that's about it.

Happy Birthday Momma

Happy Birthday to my Mom.  The woman who I still look up to, admire and strive to be like.

I think she must be so proud of her kids, kids-in-law and grandchildren.  I hope that

she's able to get a little glimpse into our lives here and think "They're doing really good."

March 23, 2013

Sometimes I Forget

Although Sarah is four years and nine months old, it takes a little action like this to remind me that inside she is SO much younger.

The day had started off like normal except that the bonus room needed a really good cleaning and I had two kids who needed math assistance.  So they hung out with me and I cleaned and taught.  Once Joshua had finished, I sent him down to unload the dishwasher.  From upstairs I hear in a voice that was purely disbelieve "Sarah Anne..." Before I could head down to check it out, Joshua carried up a flour covered little girl who was positively happy as a lark.  Arianna took her to the bath and I surveyed the damage.  What. A Mess.  It took me a full hour to sweep, vacuum and finally wash out everything that was covered.  

The one tupperware container towards the rear right of the picture is filled with Apple Jacks, Corn Flakes, Nutri-Grain bars and flour.  Notice that she took off her sleeper too?  It's right behind the box of rice.  That was thoughtful of her!

If you look carefully, the Nutri-Grain bar wrappers are nicely cut open.  The knife used to cut those is from Pampered Chef and has an 8" long blade... the knife was hiding UNDER the flour.  Yes.  It was that deep.  I'm thanking God that she wasn't hurt.  

When I look back to when Sarah was chronologically 2.5/3 years old, she was more like 12-18 months old and not looking for trouble in the ways that she is now.  It's as though we are hitting the "two's" just a few years later than others would.  I wouldn't call them the "terrible two's" but they are certainly trying.  I am off to buy doorknob covers and I will need to re-think where I store my knives.  I did have to catch myself in being frustrated because I don't know if she knew better or not.  She isn't almost five in that sense.  

On the positive side, her tiny, flour covered body was so laughable.  And I did laugh.  A lot.  Her innocence and sweetness is so charming. 

Wheat Free Journey (Update #2)

One of the most common questions I am asked when I tell them that we don't eat wheat and have reduced our gluten intake is "what DO you eat?" We are by no means going hungry.  I've listed below the foods that I do eat and enjoy.

• Glutino brand crackers - this satisfies the desire for something crunchy.  They come in a variety of flavours and are really good.
• All fruits and vegetables - not much else to say about that.
• Bob's Red Mill Pancake mix - one of our favorites.  Lots of flavour and really quite good
• There's also other mixes for cookies, muffins, breads and other baked goods
• Popcorners and Chee-Cha Puffs are two other favorite snacks of ours as well
• I've bought gluten-free corn flakes and rice crispies. 
• The pastas I buy are either rice or corn based.  The kids like them both.
• I make lots of quinoa as well.

One of the biggest things to get used to is no bread.  I haven't quite mastered how to make the best wheat free bread and so we've gone without.  I've ordered gluten free pizzas, had chicken burgers with a gluten free bun and if all else fails, I'll eat some fries and make something at home.  I've created lots of salads and with The Organic Box delivering our fruits and veggies every week, there's no shortage of produce in the house.  I have purchased a few different non-wheat flour varieties and so that's helped keep my love of baking going.  Rice flour is drier than others when used as a base but there's some gluten and wheat-free all purpose baking flours that do the job well.  I love shopping at The Bulk Barn as they have all kinds of bulk wheat-free flours, pastas and snacks.  Home Grown Foods in Stony Plain is also great for wheat free options.  

As far as how we feel... Doug feels really good.  He's lost a significant amount of weight and even complained about his jeans being too big!  I haven't lost much but I feel healthier and less 'full' all the time.  It's been a really positive change for us and I can certainly see this as a lifestyle that will benefit our family.

Contest!

I'm blogging to add another entry for me to win this devotional!

http://samicone.com/an-unorthodox-easter-story-tommy-nelson-march-blog/comment-page-1/#comment-13828

March is Cerebral Palsy Awareness Month

http://www.pagecovers.com/view_cover/cerebral_palsy_awareness.html

"Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time."

Stepping back in time to November 24, 2011...  Together, Doug and I went to Sarah's appointment to follow up from the MRI that was done a week or so before.  I am so thankful that his job at the time, allowed him the flexibility to attend this one with me.  I couldn't have done it alone.  We were told that medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different. 

They also found that there is "periventricular white matter" , consistent with "periventricular gliosis", WHICH as I understand, is the cause of her balance issues. 

All these findings are likely caused by a lack of oxygen to Sarah's brain while I was pregnant with her.  The doctor told us that his diagnosis for Sarah is a mild form of Cerebral Palsy.   

And now...

Today, she is still Sarah.  No more, no less.  She is still the sweet little girl that she was even without a diagnosis.  She loves Curious George, Harry Potter (you should see what her big sister has taught her!), pink cheerios, bananas, water and her people.  In addition to her immediate family, Grandma, Lucy, Ben, Rosie and "Auntie 'Eesha" are among the ones we hear the most about. She loves pretend play, stuffed animals and her blankets.  She is sweet, charming and manages to capture the hearts of everyone around her.  

Nothing has changed other than our awareness.  We still don't know what her future holds, we likely won't for a long time and that's ok.  There is no cure for Cerebral Palsy because the damage is done.  Brains can't be fixed.  But there is therapies and treatments.  And professionals who are passionate about these kids.  Sarah's EI coordinator is amazing.  We only have four more months of Early Intervention and then our time with them is over.  That makes me sad and slightly nervous.  Wendy has become someone I trust and appreciate.  She's encouraged me all the way and supported all of my decisions.  She's offered tools, toys, websites and information all on how I can help Sarah through some of the struggles she has.  

Sarah is simply amazing.  I couldn't have asked for a greater blessing to be part of my life.  She has taught me so much and I am continuing to learn more every day.  

This blog post was inspired by Because Miracles Happen.