Raspberries

Little Mr Man is picking it up a notch with his communication these days. With our last speech therapy appointment Kathleen made alot of emphasis on making different noises to catch his attention. Plus an ongoing thing we do is mimic the sounds that he makes as you will hear in the video below. One sound that he seems particularly interested in is the "raspberry". If you don't know what that is you'll hear it in the video. But bascially I just stick my tongue out and blow. Its quite neat really as it obviously grabs his attention. I generally get full eye contact with him from that sound and then on top of it he mimics me to the extent that he'll stick his tongue out as well! (hence the photo above) This is a HUGE stride for Alistair as he never has done any mimicing until now. He's also enjoying making all sorts of noises. Still not babbling but lots of happy sounds coming out which are heart warming as well. So one never knows but we can enjoy the little strides and dream for the big!

The other video shows Alistair checking out the house while in his new wheelchair. We're working on getting him to touch the joystick to make himself move about the house. However, right now I find he is much more interested in sitting in different locations in his new chair and absorbing the surroundings from his new perspective as he obviously is really checking things out. Another neato thing to see.

Another Year Under the Belt!

♥

sleep in

hugs

kisses

tea

strawberries

Alistair

whip cream

french toast

♥

love

flowers

happy phone calls

garden hose

pottery

feet-up

Jason

steak

♥

king crab

garlic butter

Mom

chocolate cake

vanilla ice cream

Mom's Diary ~ 1975

singing

card game

♥

Alistair Got His Learners!

I was quite surprised when I was offered to trial Alistair in the "Tiger Cub" electric wheelchair. I guess I wasn't expecting him to be ready for it or perhaps thought that was something that would be introduced many years from now. That is the wonderful part of having all the folks at the Child Development Center (CDC) focusing on your child, they are always ten steps ahead considering when to bring out the next thing along with the realistic expectations to hold for that child. All they wanted to see Alistair do was have some sort of interest and awareness in his movement. It didn't matter how he moved or where he moved as long as he did AND HE DID! I didn't quite catch the "magic moments" on the videos but at least you get a taste of his accomplishments. When going down the hallway he would stop at windows as well as various artwork on the wall. Although he wasn't looking where he was going he was obviously looking around. It was so super neat. After a few more trials at CDC we will get to take the chair home for a month or so and see if we can get him to purposefully use the thing. So thankgoodness for our open concept one level home.

I did ask Pat Hamilton, the occupational therapist, if one had to worry whether he would stop or loose interest in working on his other mobility such as getting up on all fours or standing as perhaps his mobility with the wheelchair would be easier or more interesting. I guess the research shows that such chairs tend to encourage mobility all around as they become more aware and interested in their overall surroundings. Also, I guess its been proven to enhance the childs intellectual ability as well. So its all very heart warming to see that he passed his first little drivers test and is possibly opening a whole new world for himself!

Lots of Options

Mom has always said that the fact one has options in any aspect of life is basically something to be thankful for...

Looking into this wheelchair accessible vehicle has made me realize we have more options then not. I like to keep sharing what I find out because who knows who takes a peak at this site..... and maybe possibly I will be the one to share it with them first and add to their list of options...

Braun Wheelchair ramps for Vans

• You can get the ramp installed in a variety of makes and models. Plus they can either be side entry or rear entry. Both have their downfalls and benefits. A couple things to note with getting a wheelchair ramp is you're not allowed and can't tow with the vehicle and your ground clearance is only 6" so look out for those speed bumps. The biggest issue for me though is you can not get AWD or 4 Wheel drive with it as when they do the overhaul they basically gutt the middle.
• With side entry I've been told its nice for the disabled individual as they are not stuck in the very back as "cargo". So basically they're in the middle with all the family. Also you can get everyone in and close the door and then get organized which makes a difference if you live in the north. However, one of the issues is when you park someone might park so close to you that you can't load and unload without pulling out the vehicle from the parking space.
• As for rear entry one doesn't have the issue with someone blocking your ramp. If you're in my situation where I'm going to have to take Alistair out of the wheelchair and put him in the carseat ..you have to do that outside of the vehicle from the side door. In addition, if you are having three carseats in the van this option won't work.

Milford Person Lift

Video of Milford Person Lift inuse.

I just heard about this option being available which wouldn't work for us but still is an interesting option out there. You can also get pieces to add to this so you can use it as a lift in your home.

Freedom Seating

• This is something I'm seriously considering as they now have them compatible with carseats and booster seats. Its amazing as you just push a button and this seat comes out and lowers itself right to the level of a wheelchair. The reason I'm considering this over the ramp is I'm going to have to transfer Alistair to his carseat no matter what as he has such low muscle tone and he's boney that this is the safest place for him. So for me to transfer him inside a van while I'm hunched over is not going to be the greatest option for my back as he grows. The downfall is that I'll have to do this out in the cold and also get a lift for the back of the van to place the wheelchair in the back.....and they aren't the quickest thing out there.

Lifts for the back of your vehicle

• http://www.freedom-lift.com/index.asp?pageId=105 for some reason I can hyperlink sometimes and others I can't so just click on that if your interested... Anyhow this is one of many lifts available and these particular ones can lift upwards of 400 lbs.

Canopy Lift

• Now I'm not considering this but this is just cool! I've heard of guys in wheelchairs who have this contraption and go out 4 by 4ing.. They have the freedom lift in the drivers seat, a lift for the wheelchair to get it in the back of the truck and a lift to bring up the canopy...I'm sure this isn't at all cheap but super fun!

Anyhow ....the only place I don't like options is the grocery store. Give me a max of three. NOT 23...who needs 23 options of olive oil to buy?!?! But mind you I've never been a shopper....dislike shopping...so perhaps if I did I'd love the options?!?!

Have a good one! ~ Julie

It's all in the Choices

Thats are next big attempt to incorporate into our regular schedules is CHOICES. Actually I'm attempting to make a significant effort to work on Alistair's communication skills in general. For the longest time we really put his mobility to the forefront but now with the rewarding changes in this department we need to also bring up his communication to speed. I'm sure I've said it a million times but its one thing to be told the importance and to even realize the importance of incorporating various techniques into Alistair's daily life but to actually do it is another thing. I find I realize after the fact I "should've" done this, that and whatever. A good example is working on the sign language. I remove Alistair's diaper and THEN realize I should've signed what I'm doing first.

We have some great advisors that work with us in regards to Alistair's communication. Right now we really want to make an effort in getting Alistair aware of whats happening before we do it to him. ie changing his diaper, putting on his glasses, picking him up, etc.... We also are finding ways to give him choices. So for lunch today we had a drink and some food. He had to touch the bottle or the spoon to let me know what he wanted. Its quite the process as I think it takes a bit for his brain to tell his body what he wants it to do. But he seemed to get great enjoyment out of making his own choices. You know sometimes I find it hard to know if I'm just seeing what I want to see (ie accomplishments) or if they are truly occuring. Anyhow, the whole plan is eventually we could hopefully resort to pictures and buttons that he could push so he can communicate his needs especially if the verbal aspect never comes to light.... He hasn't really progressed too much with the speech side of things. Yet with that I just have to mimic all the sounds he produces and we do manage to go back and forth quite a bit. But there hasn't been any babbling, or vowels produced past what he already has done. So thats the big challenge is just continuing on when one doesn't see the results they want week after week. However, with other aspects like his ability to stand with assistance or touch the bottle or spoon to indicate what he wants has taken months upon months. Yet we as a family have been rewarded with our perseverance.... I keep thinking of stroke victims and the motivation and need to persevere to receive those golden little changes in life that seem like a massive victory.

O and some great news. We just found out a couple of days ago that we are getting financial support from the Giving in Action Society towards a wheelchair accessible vehicle as well as all the materials to create a wheelchair accessible shower and front entrance. So hopefully by the end of March we will have our bathroom completed!

Grants, Financial Assistance and More!

So to my long long list of things to do I had added the need to apply for all sorts of grants, savings plans, and financial assitance in relation to Alistair having a disability. I'm so happy to say I've ALMOST got all these things applied for or underway... which is a BIG goal of mine before bambino numero dos comes along! Its amazing how much is out there for one to access. However, I know so many families that haven't accessed them due to the fact that their situation is so overwhelming that it just feels like it may tip things over the edge if they even attempt to get any of it underway. I have to admit you look at the checklist...... as they all have checklists of things that must get completed prior to sending the application on and it is overwhelming as it adds a whole other list of things one has to do in order to acquire this information...... ie make a doctors appt, go to the doc appt, requesting forms, returning and picking up the form....so ya it doesn't sound like a great deal unless you already feel maxed with all the other appts your squeezing in your day on top of the physio, speech, feeding issues, communication enhancement, etc that you work on on a daily basis and wonder why you are starting to feel a tad wiggy as you haven't gotten yourself out of the house! Anyhow I think I can say thanks to my nursing program as it taught me to prioritize and attack things one at a time in order to eventually accomplish finished tasks. Soooo after that long winded note to pat myself on the back I thought I'd share some of the things I've accessed and acquired as I find these things are not just laid out in front of you when you find out that your child can benefit from such things...it takes communicating with others in your similar situation, finding out what they have accessed or not, picking the brains of the professionals around you, and just a whole heck of a lot of digging...So if any of you are in the same boat as me perhaps some of these links and info I give you may help reduce the search and overwhelming thought of acquiring or at least applying for some of these extremely beneficial supports that may be available to you. I'll also share you my philosophy on some of it as I can basically justify absolutely anything if I can find a way to make it beneficial to me and get my butt motivated... so here we go....

• Giving In Action Society ~ http://givinginaction.ca/ This society provides grants to families living in the province of British Columbia. It enables families to stay together by addressing accessibility issues in their homes and communities. They will help with providing up to $25,000 towards a wheelchair accessible vehicle and up to $50,000 towards making your home accessible for your child- including lifts, elevators, ramps, flooring, and door widening.
• Melody from PG Surg Med ~ melody.chamberlain@pgsurgmed.com Melody has experience in modifying vehicles for increased accessibility and has a wealth of information in applying for funding, various modifications, and working with families to help them find a perfect fit for their needs. She serves everywhere North of 100 Mile House in BC.
• Registered Disability Savings Plan http://www.bmo.com/home/personal/banking/investments/disability-savings/rdsp-essentials This is a savings plan to help parents and others save for the long-term financial security of a person who is eligible for the disability tax credit. From my perspective this is one thing you should really put an effort into acquiring if you or your child is eligible as it is incredible how much money the government will put into the RDSP to match your funds. Basically, they will put up to $70,000 of Grant money in the account over the lifetime and $20,000 of Bonds over a life time. To open a RDSP, a person must be approved for the Disability Tax Credit, be a resident of Canada, have a Social Insurance Number, and be under the age of 60 years. Every major bank can open an RDSP and all have a different method to support you in doing so. For instance, at Scotiabank I found they had little if no information at the bank but there was a phone number to call and they could do the whole process over the phone. I attached the Bank of Montreal website as to me it provided the least complicated description/explanation of what the RDSP is, how it can grow, and what amounts the goverment will put into the account in relation to your income and financial input. I could go on forever about this plan but I'll let you read it. However, if you have questions let me know and I'll try to help simplify it for you as it can be a tad confusing at first. O and one last thing if your income is below a certain amount you don't have to put anything into the account and it will still grow!
• Endowment 150 Vancouver Foundation http://www.endowment150.ca/index.htm Many people with disabilities struggle to save for their future. To help those who want to save, Endowment 150 offers a one-time $150 gifts to holders of the Registered Disability Savings Plans (RDSP) in BC. You have to have the RDSP set up and then you have a very simple form to fill out and attach proof that you've put in $25 into the RDSP already and they'll send you a cheque to add to your growing RDSP.
• President's Choice Children's Charity http://www.presidentschoice.ca/LCLOnline/documents/PC_Childrens_Charity_form.pdf This charity is dedicated to helping children Canada wide who are physically or developmentally disabled. Their aim is to remove some of the obstacles that make everyday living extremely difficult and make it easier for the child or family to cope with the disability. They provide direct financial assistance in the purchase of mobility equipment,wheelchair accessible modifications, physical therapy and more. One main factor with this charity is you have to have a gross family income of less than $70,000. The maximum grant amount is $20,000 and I've heard but can not find it in writing anywhere that one can reapply to this Charity every five years where as many other charities have a once a lifetime clause.
• Variety Club http://www.variety.bc.ca/grants.htm Variety provides
  financial assistance for children who have special needs, with the costs of a
  wide range of equipment, therapies, educational, social and recreational
  programs.
• Toyota Mobility Assistance Program http://www.toyota.ca/cgi-bin/WebObjects/WWW.woa/wa/vp?vp=Home.AboutToyota.Mobility&language=english Helps cover the costs of installing adaptive driving aids or mobility assistance equipment, the Toyota Mobility Program offers up to a $1,000 allowance to physically-challenged customers who acquire a new or eligible Toyota vehicle.
• The Tiny Lights Foundation http://www.thetinylight.com/ This foundation is super wonderful and is a non profit organization that provides professional photography for children and families that have been faced with a life altering diagnoses. They provide families with the lasting memories through the amazing art of photography. With the help of many photographers throughout Canada they are able to provide families with photos they can share and help carry the many memories and it doesn't cost a penny. One thing to note with this foundation is they offer two photo sessions if your child is still in hospital. I have yet to take advantage of this great foundation but I've heard nothing but good things. The application process is simple. Your child must be under the age of 18. They contact you within a couple of weeks. Plus I've heard they do the photo shoot where you find it the most convenient ie. the park, your home, your front yard,.....

So a few of my opinions to go with all the above:

• Let the foundations and charities make the decision whether you deserve the support...don't assume you won't get it. I meet the most incredible moms out there whose children are higher needs yet they haven't applied as they "don't feel right" applying for some of these grants etc as "there are so many families worse off then us". Let the foundations and charities make that decision! The other thing is if you do acquire financial support for your kids and it allows you to provide them a better level of care which enhances their overall progression or provides your family unit with a greater level of support you are not only doing your child and family a huge favour but the community and tax payer also reap the benefits in the long run as you may reduce the "burden" on the health care system down the road.
• I find and have heard that families always like to put their children on a pedestal.....don't we all! When applying for a grant or charity this is not the time to tell them your childs absolute best abilities or accomplishments. I'm not saying to lie at all. I'm just saying you don't want to be writing your childs best accomplishment that may have occured once or twice a month yet there is no consistency to them. You want to tell your childs daily norms. We all love to say how perfect our children are but this is not the time!
• When attacking these forms, pretend that your going to get all the money you're applying for. Then divide that amount into the number of items you need to check off the list. For instance, if there are 10 items you must accomplish in order to get the grant in the mail and you could potentially get $20,000 from this grant. Then every time you check off something on that list you have potentially acquired $2,000 in support for your child. Now is that not incentive or what. Even if it takes you a year to complete the blooming application you're still doing really well!

Well if any of you are reading this and know of other great opportunites out there for us to access please share...even if its not for BC perhaps someone on the otherside of the country ...or another country will benefit from your posts. ~ Happy Hand Cramps! ~ Julie

Sleep Sleep PLEASE Sleep

As you can tell by the title of this one Alistair is not sleeping....or well he's sleeping BUT not when we want him to. Last night he got wingy at 7pm....we put him in bed and the sceaming till he pukes began. ACK..,....The little gaffer just winds himself up and up and up till he's vibrating and rolling fantically all over the bed. Then you pick him up and it takes anywhere from half an hour to several hours till he calms his little body down. So I'm thinking this little kidlet is being a normal little spoiled 2 and a bit year old but on top of it he gets this over stimmed nervous system that just is uncontrolled once he gets going. We've tried everything...let him cry: not a good option as he just gets totally out of control and then we're up all night trying to mellow him out and then he sleeps all day....we've done the melatonin thing: not sure if thats making it worse or what but I think it really just helps him go to sleep but thats fine until he wakes up several hours later crying his eyes out....we try exhausting him throughout the day but that doesn't change the end result....he eats like a tropper 99% of the time so his belly is full so he's content in that area...his bowels are in pretty good order now that we got totally wheat free....but ya...so typical day is wake at 4 am, get given a toy to play with till 630 am, eat by 7am, get tired and go to sleep about 9am till 11 or so...then lunch,...play, physio and all that good stuff, and by 630pm he eats super and gets tired and wingy...and then we go into unhappy mode : ( I also try the holding tightly to get him to dampen his nervous system and send a signal back to the brain to mellow out (PT told me about this) and it does help. Like last night at 1 in the morning he was getting out of control so up I got and just wrapped him around my belly and finally after 10 min or so he started to mellow...then back to bed and SCREAM SCREAM SCREAM.....So there is the issue of spoiled and special needs over stimmed nervous system and I just don't know what to do but let the little guy go with the flow until he grows out of it. This has been going on for 6 plus months and unfortunately he was starting to go down so much better and then his uncle played with him one night to Alistair's enjoyment but he got so wound up that he took me forever to mellow him and since then he's been a terrible sleeper again....So who knows! I just wish I could find that little switch to devert him back again....LUCKILY Jason does his fair share of being with Alistair in the middle of the night so we do give each other the reprieve we need. I just can't imagine having to take this all on by myself night after night....I think I'd snap...so ya I can't imagine how the single mamas do it all on their own...Anyhooo its 10 am and Alistair is contently sleepling...wish there was a magic wand out there....if you have any suggestions let me know! ~ The Ever Growing MAMA ~ Julie