Random Stuff About Mason

Overall, Mason is doing quite well right now. Here are the nitty gritty details:

Potty Training

Ughhhh. Will it ever happen? He tells me "poop" after the fact. I've been loaned a little device that sounds an alarm at the first sign of moisture. (I'll spare the rest of the details) The thing I'm waiting for is my memory. I keep forgetting to use it. 

Mason will be turning ten at the end of March. I figure that we've changed about eighteen thousand diapers in the last ten years. Many rather disturbing ones.

Nights

Not too bad. Mason is still waking every night, but he settles quicker most of the time. I have also been not turning on the baby monitor. So I don't get up until he's banging the walls and yelling "Mommy!!!". I go to him right away if he's having a bad dream and screaming from that. I'm not a totally non-responsive mom!  

Mason has been falling asleep within five minutes of going to bed. It would take him an hour or two to fall asleep over the previous months. He sleeps through the night 2 - 4 times per month. Last night was one of them! 

Then there are sleep positions. He falls out of bed every once in a while for moving around so much in his sleep. Last night I checked him before I went to bed. I so wished my camera battery had been charged! He was sitting cross-legged with his head on the bed in front of him - asleep! Another night Daryl got up to Mason's crying. He found him partially fallen out of bed with both hands on the floor, rest of his body in the bed, stuck.

Behaviour, Anxiety, and Seizures

Huge improvements! :) The doctors said I could play around with the Risperidone in how much to give Mason and when. So in the end, it works best for him in the morning. I can see when it takes effect. Mason often wakes up rather aggressively. He kinda explodes out of his room some mornings. After about 45 minutes I see the change. With each change I made in the

 medication, I saw his seizures increase quite a lot. I also know that it takes about a week or two for the side effects to diminish or go away completely. So I decided to wait it out. Sure enough, the seizures reduced again. In fact, we hardly see any now (2 - 4 per day?). And what we do see is so extremely mild. My theory is that the Risperidone has reduced his anxiety which has, in turn, reduced the seizures. Anxiety and excitement are well known triggers for increasing seizures in someone with Epilepsy.

Development

It continues to amaze us that Mason is still learning and progressing at a rapid pace! Speech is the most evident right now. Most of his words are still partial and we don't always know what he's saying. Sometimes, when we don't get it, he tries a different word that has a similar meaning or explains the first one he was trying to say!  

He is stringing words together to make partial sentences. He knows he's doing it, and he is trying so hard. There are days that he is an endless chatterbox. When my ears and brain start to hurt from it, I remind myself "this is a very good thing". 

All the speech also reveals to us what's inside his head. He has a sharp memory! We can't tell him something and hope he'll forget. He also understands nearly everything we say.

Burp! Fart! Two of his favorite words. Most uncomfortable when he shouts them out in public! But put him in the same room with other boys that find that funny!?!!! Boys are SOOO different than girls!  

Interests

Mason has to do EVERYTHING we do. If the girls are baking, Mason's right in there. So we have devised an alternative for him! We give him a bowl of flour, add some pepper or cinnamon, something that contrasts the white of the flour, give him a spoon and he is a happy boy stirring.

Mason loves to paint. "taint" in his language. 

Coloring is also a favorite. he even tries drawing certain things like hearts and circles and grass. :) A little while back I watched him draw and name the things he was drawing. I had never seen him do that before!

Hair. He loves getting his hair done up with gel. Loves getting his hair cut and highlighted. You should see him look at himself in the mirror!

Playing with cars, Webkinz on the computer, reading - well having us read to him , bubbles and baths are also lots of fun. :) Occasionally, he plays on his own for a while.

Medical Stuff and Doctors

So we had a few appointments with the psychiatrist. They went very well. We  got a partial evaluation and are waiting for an appointment for the big evaluation at Sunny Hill. So far they have seen indicators of anxiety, autism and ADHD. 

Blood work has not yet been taken. I have a sort of appointment for someone to come to our house this Tuesday, Feb 24 at 8 am. So if any of you want to use your powerful muscles to help me out that morning, give me a call! 

I've gone blank on some of the funny things he does. There are plenty of stories with this boy!

Well, I should go. He has plunked himself down in my computer chair, waiting impatiently to play Webkinz - lots of  noise in my ears here..... Did I mention that his volume control is broken?

Prayer Request for Travis

Occasionally I put up a prayer request for someone I know. I have one today for my dear friend,  Suzanne, in Michigan. We met online a number of years ago because of our boys. (there are always good things that happen in the midst of even extreme difficulties!) She has a son with Epilepsy who is a few years older than Mason. She has been an amazing encouragement to me over the years. I always know that she knows what I'm going through when she says thinks like, " Mason reminds me so much of Travis at that age!" That also means that she herself has felt the way I have on many, many occasions. And I understand her current fear. Her faith in God has been a huge inspiration to me. Yes, Suzanne is an amazing mom, friend, and sister in Christ!

Here lies the need for prayer: Travis, who is going through puberty, has been experiencing some frightening break-through seizures. He's been doing better over the last few years, but recently the seizures have been getting out of control again. They, too, have experimented with many medications and treatments. I have read that puberty can cause significant changes to a seizure disorder, and as Suzanne says, there's not much that can be done about puberty. Mason's not there yet, so I haven't looked into it that much. 

Coming up:

- adjusting medications for Travis

- Travis will be going into the hospital for a few days for intensive EEG monitoring. Just like Mason, Travis cannot understand what's going on when they wrap him up and physically subdue him while they glue 25 - 30 'leads' onto his head, then keep him hooked up to a computer for those days, as well as constantly videoing him. ( I"ll inform you when they have a date)

- Other stuff. Some forms of Epilepsy are very unpredictable, especially the more severe kinds. So there may be other medical tests coming up, as well as unpredictable changes in Travis.

- Pray for the doctors. That God will give them amazing wisdom, knowledge and discernment in understanding precisely what is going on, and abilities to treat Travis effectively without harmful side effects. 

- Suzanne and husband and other son. Such changes in seizures, along with the up-coming tests, are very difficult on a mom and the rest of the family. 

from Suzanne: "... nothing stronger than the power of prayer on our behalf.  Mostly I'm praying for the seizures to just get under control - I've been praying much bolder lately and asking for a miracle - what a story to tell.  Thanks for thinking of me and Travis!!"

We are all placed where we are for a purpose beyond ourselves and our own happiness and fulfillment. We are here to come alongside others, just as God has been there for us. (my paraphrase of 2 Corinthians 1) 

Please join me in coming alongside Suzanne and her family.

Thank you, friends.

The Birth of IMAGINE Ministries

I have some very, very, exciting news!

We are only a few weeks away from launching Imagine Ministries!

This is a program designed for FAMILIES of children with special needs. When you have a child with any type of disability, it is very difficult to attend many community functions. Church is one of those difficult places to attend because there is seldom an appropriate place for the kids to be. We seldom attend church all together as a family. Mason either goes to Grandpa and Grandma's house, or Daryl and I take turns going to church with the girls. When we do take Mason along, we usually end up walking the halls, bugging the person in the library, pulling the public phone off the wall (he actually did that a few years ago) or Daryl often ends up taking Mason to Starbucks.

We have had help at times, which was great! But there still was not an appropriate room for Mason. He doesn't learn anything in the grade 4 classroom because his comprehension level is that of a 2 or 3 year old.

Here's the quickie version:
~ It will be available for the Saturday night service at Northview Community Church in Abbotsford (northview.org)
~ Each child will have a one-on-one caregiver
~ Caregivers will be interviewed and trained
~ Available to EVERYONE - the whole community! :) not just church members
~ A classroom is being renovated for sensory reasons, and will have a trampoline with handle bars, great toys, a private change table area, and more!
~ There will be free play time, KidsTown (Sunday school) worship/singing time, structured classroom time with stories and songs, colouring and crafts.
~ We will be implementing a buddy system with typical kids

Contact myself or Robyn at imagine@northview.org if you have a child with special needs or want information about volunteering.

So how did this begin?

Fall of 2007 was the first time I heard that Willingdon Church in Burnaby had a program for kids with special needs called Imagine. That was when I started bugging our new Children's pastor, Robyn about getting it to Northview. Then I heard she had been the pastor at Willingdon when it started there! She started waiting for someone to take it on. So half a year later, spring of 2008, when nothing had happened I met with Robyn to let her know I would help get things started, while we more actively looked for someone to direct it. I told her, "I have no time for this, and no passion for it." I knew it was needed and would do what I had to in order to get it going. Little things here and there started to happen, but no leader.

A week and a half ago my friend Thaleia shared her story of obeying God when she really didn't want to go where he was sending her. The very day she arrived, he gave her an unexplainable joy! I asked her how this whole experience had changed her life. I can't remember her exact quote, actually she doesn't either... but it was something to this effect: She learned that she needs to obey God no matter what her feelings were. She obeyed, kicking and screaming, but she obeyed. Feeling good about what God wants us to do is not a prerequisite. Feeling good once we do it is also not a guarantee.

Prior to this, there were some Bible verses that kept popping up in different places.
Isaiah 58:10-11 if you pour yourself out for the hungry and satisfy the desire of the afflicted, then shall your light rise in the darkness and your gloom be as the noonday. And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.

Satisfy the desires of the afflicted ... satisfy the desires of the afflicted. Even now as I write this my emotions well up. Our community, Abbotsford, has so very many families, with a child with disabilities, that have desires. Desires to be accepted in a public setting. To not feel out of place. To not be on edge, wondering if the person looking at them is going to say something hurtful because of the behavior of their child or because of the way their child looks. Wondering of they will have the energy to go out.

afflicted
adjective
1.	grievously affected especially by disease
2.	mentally or physically unfit

Does that describe kids with special needs or what! ( I would differ with the unfit part, but that word is not used according to God's view of these kids,although that's the way society often sees them)

Anyway... these were the two nudges, Thaleia's experience (interesting note here: she went on her mission's trip last fall and did not have the opportunity to share her experience in our pastorate until recently...hmmmm interesting timing!), and the Word of God. So .... the next day I said yes to God and popped in at Robyn's office to tell her the news that I would fully take on Imagine Ministries, "add me as the contact person".

Was I crazy? Yup. I was exhausted from waking at night all the time with Mason, changes in his behaviour, new doctors to see (it's amazing how energy-draining a new investigation and seeing new doctors is!) etc, etc (just read my posts over these past months!). My brain was totally fried, I would go into the garage, I don't know how many times a day, and just stand there because I had no clue why I was there. I would do that when driving as well. No clue where I was going. So I would just keep heading in that direction until it came back to me. My kids are used to me making lots of U-turns anyway, so they didn't even notice! I had begun a Theology course, but gave it up because my brain could not process anything. (that was brutally difficult for me to do. I love studying) I was taking huge naps every day, laying around on the couch ... That's what I do when I'm depleted...

So this is where faith steps in. Believing in and following God even when and ESPECIALLY when it doesn't feel comfortable! Taking on something new when I couldn't even handle what I already had! People very often quote that God will not give us more than we can handle. Yet, he does give us more than we can handle! I think he gives us beyond what we can handle, so that we will ask him for help. That is when he steps in and does amazing things! If we are handling it, we don't need him. In 2 Peter the author is talking about how God has rescued different people, and even angels. Then he says this: "if this is so, then the Lord knows how to rescue godly men from trials".

So, an amazing thing happened the next day. I woke up refreshed and renewed. And it was not because I was excited about the Imagine Ministries. When I talked to Robyn, I was still wondering how on earth I was going to do it, and I still did not feel like doing it! On Thursday my gloomy feelings instantly turned to light, where I felt scorched, God was guiding me, and I felt strong again after feeling so weak for so long. The scripture was coming true in a way I have never experienced before! Ideas started pouring in, everything started to fall into place in amazing ways! I am totally awestruck by what God is doing!

This past weekend we had our first promotion looking for volunteers for Imagine with a video of different parents and their kids with special needs. Robyn and I were available after each service. We had 25 volunteers sign up!!! Incredible! If you were one, thank you! If you're going to be one, thank you! If you're praying for us, thank you! :) This means we can accept more children!

I'll be letting you know about some other WONDERFUL things that are happening, but I can't tell you yet! It's a SURPRISE!

Our God is an awesome God!!!!!!!!!!!!

Company for the ride in

Hi Everyone. Two items here:

1. I have an appointment with Mason's psychiatrist at Children's Hospital on Tuesday morning at 10 am. He does not have to come along. That means I am going in alone and do not get to use the HOV lane. So, is there anyone out there that would like to spend the day with me? (then I can use the HOV Lane and shave off a lot of driving time) Here are the details:
Leave at 8 am
10 am appointment (lasts about an hour)
IKEA!!!!!
home by 2 or 2:30 at the latest (gotta pick kids up from school - but always have a back-up plan)

2. The blood test has not yet happened. We went in, but SOMEONE forgot to read the fine print. (Mason can't read, so obviously it must have been someone in charge of him) He is supposed to fast for 10 hours first. So that means an early morning blood test (after not eating all night). The complication is that the wait at the clinic is always LONG in the morning, because so many people have to fast for their blood work, and they don't take appointments. I cannot see Mason hanging out in a medical clinic for an hour or more. So I contacted our Health Unit nurse to see if she could do it at home. There is a program where a nurse will come to our house, I first have to get a requisition from our doctor. So when I have that in place, I will be asking for help again.