Ican't remember how I stumbled upon this. eBay perhaps? I think I waslooking for some type of 'jumper' device for the baby. I figured when Iwas downstairs working, it would keep her busy and in one spot, out oftrouble.

Merry Muscles

A few years ago, I told Santa my interest in this product, and he agreed with me thatit was something our youngest might like, so he brought it for her when she was still an infant. Now, in all honesty, I rarely get time to go down to myoffice to work (most of my work is done in my kitchen), so she reallyhadn't used her Merry Muscles as much as I would have liked. But, whenwe did get to use it, I was very pleased with it.

How does it work? You fasten the Merry Muscles to thedoorway (ours screwed in), where it hangs, and you put them in it tojump around (has very durable snaps).

How is this different than other jumping devices? Well, itwas designed by an occupational therapist for safe positioning. I likehow it hugs the body, which is a BONUS- it's safer because the child can't CLIMB out!Also, you can purchase a doorway attachment so you can move it fromdoorway to doorway. It is also washable, which is great. The price wasreasonable (I think I may have ordered mine new from a store on eBay,not from this particular website).

This company also makes and sells larger versions of these forindividuals with special needs. Of course, I checked into getting onemade for my son, but in his case the cost was a bit pricey, and unless Isell an organ I won't be getting one for him (yet!). I think with his otherexpensive equipment, I ran out of organs to sell. I think I'll see ifmy husband has any he can give up...

It is very cool. Definitely worth printing off the information and asking your therapist about it, and whether or not it would be right for your special child. May also be great for those who crave sensory input.

I was recently contacted by email by a company. In the email, they asked me if I would mind taking a look at a product that they offer, and perhaps do a review for my readers. They would send me a sample to try with my own son, and I could make an informed review.

Yes, I definitely would consider this. (I used to write product recommendations for my blog when I worked for the newspaper, and thoroughly enjoyed it). I would also consider this for anyone else who has a product or service or resource that is relevant to my readers. If  you're interested, feel free to send me a comment or contact me. The product/service/resource should be something that parents or educators that work with others with special needs would find useful. If you want to send a sample, you certainly may make arrangements to do so (but isn't necessary). Please note, if I don't like a product, I'm not going to write a recommendation (sorry, I can't lie!)

As for that aforementioned product, I hope they send it soon, because I'm very excited about it. I can see it being a very useful item for me, and me ordering more for my personal use.

Want to know what it is? Stay tune!
 

My girls, ages 3 and almost 7, are signed up for swimming lessons at our local pool. (Well, the 3 year old was until we took her out of lessons- she's too teeny and shivers with cold the entire time). I pack them up every day, and head to the pool that is in our community and I watch my oldest daughter swim. I take Cameron with me, who looks on quietly and contently from his wheelchair. I always feel badly though, because he LOVES the water (one of the characteristics of Angelman Syndrome) and he can't do the lessons. And, even though we have a pool so close that would give him the opportunity to do something (because he is so limited in skills), I can't take them all myself to the public swims because I have TWO non-swimmers, and it isn't physically possible for me. I can't handle the 3 year old when my hands are on him all the time. The odd time I can find another adult to come with us and manage her, we get to all go.

(No we don't have any type of special swimming program here, the town is too small).

I like to reminisce about when I DID take him for swimming lessons, many years ago. And I was just telling someone about it the same day that something else happened, which makes it kind of funny. 5 years ago, I signed Cameron and his sister up for the Mom & tot swimming, where the mother gets in the water with the baby, and they do a play-based lesson. I made arrangements for this beforehand. I took my daughter in, and they offered me an extra instructor to take my son. Well, my son ROARED with laughter in the water, and my daughter screamed because she didn't like the water. People were surprised that the children were siblings from their different reactions. (Guess I volunteered to take the wrong kid in!). Cameron loved those lessons, and I was always grateful that the instructor took him in so he had the opportunity to go.

Fast forward 5 years.

On Friday it was our 10th wedding anniversary. I took the kids to the pool at 5pm for the swimming lesson (where I told a friend the story about those lessons years ago), and then came home and got ready to go out for dinner. We didn't have a babysitter, so we took all 3 kids out to the restaurant to celebrate our anniversary. We got seated, and our waiter introduced himself, then said: "I know this might sound weird, but is your son's name by any chance C?????" (I forget what it was he guessed at- he didn't get it right, but it was close). Then he asked about the Hampton pool, where we live. HE was the instructor that had taken Cameron in for the swimming. He told us how much he enjoyed taking him in, and later told my husband that it was one of the highlights of his instruction days. The guy even remembered that Cameron liked deep pressure, not light touch. Wow...

The really interesting part was how Cameron responded to this young man. Usually Cameron couldn't care less about strangers. He will reach out to us, and give us smiles, but usually does this only with people he knows really, really well. He immediately gave big huge smiles to him, and reached his hand out to his on several occasions when he came to our table. And the young man interacted with him so well; it was really fun to see. I told him that it was unusual for Cam to respond to someone like that- to which he replied that he was very honored.

I wonder if he recognized him somehow- could that be possible? Did he remember what we were talking about? Or did he just sense that this was a very approachable person?

I'm not sure why he responded the way he did, but it was so refreshing to see. And I'm glad he felt honored, because he doesn't reach his hand out for just anyone to hold. But, he can't do it TOO much, or else mama might get jealous

I'd appreciate your vote!

Anyone who has a child who is in a wheelchair or who will someday be considered for a wheelchair can probably relate to the wheelchair meltdown. You know, when your child is fitted for his/her first wheelchair, and you later bring it home. It looks so final, so.... well, wheelchair-ish. I've heard many stories about parents who find this to be a particularly hard time. The realization that their child is no longer a baby, no longer in that stroller stage. Many parents cry about the first wheelchair purchase. (aside from the price of it!)

I didn't really have that issue when Cameron got his chair.

Well, let me back up. Cameron got his first wheelchair quite a number of years ago. He was probably 3 or so. And, it was an emotional time for me, but more so because of how we acquired the chair. This perfect little purple wheelchair was given to us by the children's hospital. It had been donated back to the hospital by a family when their young daughter had passed away. There wasn't a mark on the chair- it had hardly been used. That really hit home with me, and still thinking about it now, I get emotional. But, we used the chair for many years and love the chair, and are thankful to the little girl and her family.

Because Cameron has a habit of sleeping during the day, he needed a set of "wheels" that reclines. The donated wheelchair didn't recline, so we happily used it in the house, but couldn't use it when we were out and about living life, or when he went to school, etc. It was recommended that we get a special needs stroller, and although I first liked it (or thought I did), I quickly realized that I loathed the thing. It reclined (which was good), but it didn't fit through doors (the wheels were too wide), and it was heavy and awkward, and it looked "babyish". When Cameron was 8 and we got his wheelchair van, we needed to upgrade to a wheelchair because the stroller didn't fit onto the ramp to get onto the van.

I was SO delighted with the new wheelchair we got several months ago. It is a Zippie (by Quickie), and it is wonderful. It stears beautifully indoors. It even does better outdoors than the stroller did. It fits through doors! It has wonderful recline options for when he's sleeping. It is just generally very easy to use. When we got this wheelchair- the first wheelchair that he would be seen in out in public, at school, etc- I wasn't upset at all. After all, he was a big boy now, too big for that darn stroller, and he should have a big boy chair. Everyone loved it, and he got many compliments on it. And I was happy.

Until today.

My husband took him into the seating place to get his headrest assessed and adapted. Mr. Cameron has a habit of sleeping in the van, and hangs WAAAAY out of his wheelchair when he does so. We wanted to have his chest straps tightened, and maybe some type of side support for his head. Well, he came home (crashed out in a dead sleep) with some contraption to hold up his head while he sleeps (I didn't like the look of it, but it would only be when he's crashed out, and I admit- I wanted one to hold my head when I napped in the passenger seat), and this awful looking head rest with these big sticking-out side supports.

I was traumatized.

I took the kids to the pool where my daughter had swimming lessons, and I felt really self consious. I didn't want to unload the wheelchair from the van and wait with the other parents and kids. But I did, then I went home and called my husband.

"I don't like it," I said. "I really don't like it. He looks disabled."

Now, I'm surprised that my husband didn't give me a big DUH on the phone.  When I told my good friend about my issue with it on the phone, she and I kind of laughed about my reaction and (duh) statement. But, I just don't like it. Somehow, the need for more supports, just makes him look more disabled in my head. Could he look 'more disabled'? He doesn't walk or talk, or use his hands really functionally. We know he understands quite a bit, but he really can't communicate his needs or what he understands to us. Isn't that pretty disabled? Hadn't this sunk into my brain yet?

My son is sweet as a button and I adore him and couldn't imagine life without him. And I know that he is "different", and I'm aware of the challenges he faces and that we face together, but I think I sometimes forget. I forget about reality. I forget about how others perceive him or us. I think that's why when I watched myself on the video I did for the donor's report for the children's hospital, where I talked about Cam and our challenges, I got so emotional. I'm used to telling the story of us, but not used to WATCHING me talk about it. I watched it and was like - wow, she (I) has a child with really significant special needs and medical issues. And I cried. I don't usually feel sad for myself. But, I felt sad for that lady I watched speaking on the video.  It was sort of an out of body experience watching myself talk about it.

It's really a very silly thing, because I know that there are people who need tremendous body support who have very fulfilling and eventful lives, and I don't think any less of them, nor do I feel sorry for them. And, I shouldn't worry about other people's perceptions.

But, at the same time, I don't like that head rest, and it WILL be changed.

Now that I think about it, I think I may have figured out part of my issue. Cameron's progression is SOOOOO slow. Almost non-existantly slow.  It takes years for him to learn a new skill. For instance, he just started to actually grab a toy and bring it towards him to play with. Took him almost 9 years to learn that skill. Needing MORE support added to his equipment is a step back (even though he doesn't need it when he's awake and sitting upright). It's just plain depressing.

Oh, and not to mention the fact that he looks "more disabled".  Yes, I'm a nutbar...

That head rest has got to go!

How ironic- I wrote this post a few days ago. And before I even posted it, my friend was telling me about how she is glad she didn't have a 3rd child like she had first wanted, and how she has all this "freedom" now that her kids are getting older. I told her how I had just written about this, and how hard this is for me. Awkward. Should have kept my mouth shut.

I find it funny how people will talk about this, and not have any realization about what this means for me, and the "freedom" I will never have...


Bummed... Having a Medically Complicated Child Often Means Giving Up Freedom

I don't bummed about life with a disabled child too often, because I don't let myself. I try not to think about it, and I just enjoy him. But, when I think about the lifelong commitment of having Cameron, and what it means for my freedom and my own quality of life, it does sometimes get me down.

I'm jealous of my friends who have all typical children when they talk about their lives. They can leave their child/ren with babysitters. They don't have to worry about seizures and gtubes getting pulled out. They don't have to worry that their child can't communicate his or her needs to someone. They just don't have to consider so many things that I have to consider.
But, what really gets to me is the fact that while my friends have children who are getting older and will be able to be left alone, and they have more freedom, I will never have that luxury. I won't be able to get Cameron (my oldest) to watch his sisters so I can run to the store to do errands. I can't leave him in the car unattended. I can't just let him play in the yard like other 9 year olds can, and keep an eye on him.

My friends' children are getting older and they are appreciated their children's independence, and their time is freed up. Mine is not. I thought I commited to being tied to the hip to my children for X number of years, just like everyone else. It's hard when they are enjoying life, and I have to worry about whether I can go, which often means bringing him with me, and whether or not it is wheelchair accessible.

I don't feel sorry for myself that Cameron is my son. In fact, my life is very blessed with him. But, I do miss my freedom, and yes, I admit that it makes me angry and I do feel sorry for what I am missing, and that unlike others with toddlers, there is no end in sight for me.

I have a difficult decision to make, which I'm really struggling with.

We live in New Brunswick, Canada. Myself, my husband, and our children(our special needs son who just turned 9, his sister who is almost 7,and his 3 yr old sister). Our family and the majority of our friends live here, close to us. They are a tremendous help with the girls when we need it, and a huge support to me. Many people offer to help with our son, but he's a complicated little fellow. His feeding tube, and the possibility of difficult seizures- well, they're a little intimidating to people. He also doesn't walk- so he's getting harder for people to lift, and will only get harder. So, while we get a lot of help when we need it with the girls (for instance if he had to go in the hospital),we have very little help with him. Part of that may also be the fact that I don't *feel* as though I can leave him, because our nearby hospital is not knowledgeable in the workings of feeding tube buttons, and how to replace it if it were to get accidentally pulled out.

Recently, we went to the IWK, a children's hospital that is in Nova Scotia, Canada. About a 4, or 4.5 hour drive away from where we live. We went for a scheduled visit for Cameron to put him on the ketogenic diet for seizures. I love the IWK. I love the care they give, I love their knowledge in all things about my complicated little man. We actually lived closer to the IWK when Cameron was very young, but moved back home to be close to family again. Well, when we went back for the scheduled visit, I fell in love all over again. I love the city, I love the province, I love the people. I LOVE the hospital. In NB, I'm the "resident expert" on gtubes.It's scary, and I'm tired of it. I always feel so tied to Cameron, like I have to be close to him, or always able to be contacted by phone should a problem arise. If he were at school and an issue happened,they can't just call the ambulance or the hospital, because they wouldn't know what to do.

So, imagine my feelings when we were at the children's hospital for that week, and I took Cameron to the playroom. There were maybe 8 children total in the room. Besides us,there were at least (that I could see) THREE other children with feeding tubes (they were hooked up for feeds). THREE. My initial response was wow, this is so comforting. A place where we aren't different, and I don't have to explain my situation or anything to these other parents. They "get it". But within 3-5 seconds of my feeling of comfort, I was completely overwhelmed and had to hold back tears. There were THREE other children in the room with feeding tubes.The depth of what that meant was astounding. If something happened- if something happened there, there were TONS of people in that hospital with 1st hand experience with those buttons who could easily deal with it. It wouldn't turn into an emergency situation. It would be dealt with quickly and probably without issue.

The next day I had a meeting with the dietitian for teaching purposes in our room, and one of the Child Life workers came down and asked if they could take my son to the playroom for me while I had my teaching, and I sent him on his way with her. The dietitian asked me if I was a bit anxious about him going. I broke down and cried. The complete opposite, I explained. I can send him with someone and not be with him, and know that he will be ok. I don't have that sense of comfort at home.

Do you know what I would give to be able to go on a date night with my husband, or to go on a trip for work, or go away with friends? I adore my son, and I want to be his primary care giver, I really do. But, I want to feel like there is a backup, someone else who can handle things and so I don't have to worry. I worry about myself and my safety and my life quite often. And not because I don't want to die- but because of the fact that it TERRIFIES me to think that if something were to happen to me, what would happen with him. (That being said, my husband is very good with him, but I do more of the hands-on things with Cam, as he works outside the home). I think about Cam's future often, and that I won't be here to always care for him. Where we live now, and how things are, no one will understand how to care for him.

Our trip to the children's hospital made me want to move back there (closer this time). There is such an amazing community around that hospital. I feel at home there. I really like the city. For the most part, it is more wheelchair accessible. My husband can easily transfer for work, and there are more opportunities for him to advance in the company there that don't exist here. Seems like an easy choice, right?

Not exactly. We have been blessed here. Where we are now (a small community), they have supported us tremendously.People know us here. They know Cameron. His school (kids and staff) are amazing to him. They have bonds with him that would be hard to build somewhere else. Our family is here. I do know from the past though,that I would still come home for visits and spend good quality time with them. But still, I worry about my parents. They are still relatively young, but what will happen when they get older, or if they needed me?

Part of me keeps thinking that I should keep living where I am and fight to make changes here and get things set up ideally for him. But the reality is, I can't make gtube experts appear out of no where who are going to be here the next 50+ years to care for him.

A few weeks ago, I had made up my mind. We were going. I was 98% certain.And we were doing it now, during the summer months, before school started back up. I had already said my "maybe goodbyes" to the school staff (a very emotional thing for me- I cried for days). I told my hubby to hold off on asking work for the transfer because we needed to find a place to live, and that would be a challenge. I was right.

Things have never been easy for our family. Medical bills, insanely expensive equipment, the fact I can't work outside the home, and my husbands knee surgeries. Let's just say we have lots of love, but an over-abundance of money has never been an issue. We've been married for 10 years this summer, and we still do not own our own home (yet). So, we don't have the financial means to just move to a new place and buy (or build as we were hoping to do to work for Cam's wheelchair) a new home. Especially in a place that is MORE expensive to live than here. If we moved, we would have to rent. Of course, there are issues with that. We'd have to rent a house to have the space needed for all his equipment and the 3children. Not only is renting a house insanely over-priced, but he went to look and there is nothing that you can get a wheelchair into.

And then there is the school issue. It takes SO much work to get Cameron moved into a school and get the staff trained and the kids accustomed to him. I told my husband I'm only doing it once. I don't have the energy to do it, then do it again a year or two later. Plus, he needs to get into HIS school and stay there to have any chance of the other kids making connections with him. The issue is, if we could find a place to rent that would actually work, what are the chances we would find a house that works for us to buy later on down the road. Not good odds. So, we're stuck on the living thing.

We tried buying lottery tickets, but that didn't pan out. And none magically appeared, so it isn't looking good for us. It's quite disappointing,as I had done a lot of soul searching, and had made up my mind, which is really difficult for me, and now it can't happen. When we were visiting, we even happened to drive by a house that we all liked that was for sale, and it isn't advertised as such, but it has a ramp on the house. The girls noticed right away that there was something with a lady bug hanging off the house (their fav)and so we all fell in love with the ladybug house. A ramp and the right number of bedrooms and a ladybug. It was like it was meant to be. If only I could sell a kidney to get the down payment...

I guess we're back to living on love and playing the waiting game. I'm not quite sure what the right decision is. I thought I had made it. I thought I had seen all the signs pointing me down that road. Now I sit and wait and wonder what will happen. It's not a good feeling to feel stuck. I await a miracle or a sign to tell me what to do.

I haven't written for awhile. I keep trying to commit the time to keeping the blog current, but sometimes life gets in the way.

Cameron (my almost 9 yr old with Angelman Syndrome) has now officially been on the ketogenic diet for a few weeks. I mentioned in an earlier post that we are hoping to control some of the seizures that we don't see (with the diet) and to hopefully start to wean him off at least one seizure medication.

Learning about the diet in our case was fairly easy. Because Cameron has a feeding tube, it takes most of the hard work out of it. We don't have to deal with the discipline issues of keeping him away from certain foods. The dietitian carefully calculated out his formula requirements for him, so that takes the hard part out of that. I find it ironic that our original dietitian tried to talk us out of trying it, partially because of how much work was involved. (what work?)

The first week or so after coming home from the children's hospital, Cameron was pretty lethargic. We have no idea if that was diet related (although I'm told it can be) because he does that from time to time anyway. Then he got cranky. That wasn't pleasant. He got downright, inconsolable cranky for several days. Again, I have no idea what that was about. (Which is what I hate most about having a non-verbal child- how he can't explain to me what is wrong).

The past few days, Cameron has been a sweet, lovable, extremely happy little guy. To the extreme. I'm loving it. The funny thing is, he seems to be quite clear minded (not noticing any new skills yet though). He's looking around, taking everything in. However, we're pretty sure he's got quite a bit of little seizure stuff going on. I don't know if I can just see it more because his eyes seem so "clear" otherwise? We think we're seeing the return of drop seizures, and lots of little blinks and flutteries going on- just something "different" with his eyes. But his mood is fantastic. So, I'm trying not to panic. I'm optimistic that this will all work out in the end and that he will adjust to the diet and do well.  I'll keep you posted!

I was asked recently to do a written interview for SpecialNeedsKidsTalkRadio, to discuss my son, my experiences with Angelman Syndrome. Trials, tribulations, celebrations. How he & his disorder inspired me to start my own business.

Thought I'd post the link for my readers to check out:
WRITTEN INTERVIEW

The blog owner is a great gal (met through Twitter). I encourage you to check out her very informative site.

Well, the countdown is on. Today is April 12th. My 8 year old son is being admitted in less than a month to the children's hospital (May 11th) to be put on the ketogenic diet. I'm a little nervous, but also looking forward to seeing if it can help him.

Cameron's visible seizures are under control, except  for a few breakthrough seizures we've seen in the past year. So, why are we trying the ketogenic diet with him? (He's the lowest functioning child I've ever heard of). Because we know he *should* be functioning at a higher level for someone his age with Angelman Syndrome. The neurologist and I have wondered if he has a 2nd genetic condition affecting him, and tossed around the idea of testing him, but personally, I don't know if I want to know.

We know from doing an EEG that Cam is experiencing seizures, even though we can't see them. So, it is hard to know how much those seizures are affecting what he can and can't do. He has also been on very sedating seizure meds for several years. Between the seizures and the meds, we are assuming that some of what he CAN do is being clouded. We're hoping that with the diet (as a seizure "medication"), we can wean him off of some of his sedating meds. And we're also hoping it will help the seizures we aren't seeing. I'm not expecting miracles, and I know that some people have experienced "miracles" with their kids and the ketogenic diet. But, what I am hoping for is some kind of mental clarity for Cam. I'm hoping that he can make more eye contact, and focus more. I'd like to see him being able to use his hands better to functionally pick something up.

What is the ketogenic diet? It is a very high fat, adequate protein and no carbohydrate diet that typically kids go on to help them get seizure control. I am including a few resources below for you to refer to for more indepth information if you're interested. I was a bit hestitant in the beginning about putting my little guy on a diet so high in fat, but typically the kids don't stay on it for more than 2 years, and it is really any healthier to be pumping all those drugs into his little boy long term? I doubt it.

We received some resistance from our local pediatric nutritionist in the beginning on trying this with Cam. In our province (New Brunswick), it hasn't become a popular method of seizure control yet, and to be fair, she hasn't seen a lot of good outcomes yet. But, the children's hospital in Nova Scotia really views this as a very valuable treatment, and they have a whole system of professionals and such in place. This is why we are going there to start it out, and we'll consult with them as needed. For us, it will be much simpler to do this with Cam, as he is almost fully gtube fed, and he honestly doesn't care if he eats by mouth. It will be relatively easy for us to measure out his needs and give them to him by formular, whereas a child eating by mouth has to have every single item carefully weighed, and you'd have to try to keep your child from eating those 3 cheerios (or whatever carbs) that could throw them into seizures, etc. Yes, for us there will be much less complication.

Cameron got a little bit of chocolate for Easter today. He'll get to have a nibble of that, then no chocolate again perhaps for 2 years. For him, he won't mind. For one of my daughters, it would be torture (for them, and for us!)

So, in less than a month we will go and be admitted. Cameron will have tests done (an EEG and blood tests) and they will fast him and monitor him and his blood levels. And we will introduce the new formula and vitamins and we will be taught exactly what we CAN feed him by mouth if we are to give him something.

I'm very fearful of messing with the seizure control we DO have, but I am excited by the possibility of more mental clarity for him, and giving his body a rest from the medications. I'd appreciate if you could keep us in your thoughts and I'll keep you posted on how we make out.


RECOMMENDED RESOURCES:

The Ketogenic Diet: A Treatment for Children and Others with Epilepsy is a book that the children's hospital sent us in preparation for the diet. I haven't read it all yet, but it is a great book (obviously, if it is the book that they recommend as a resource)

Keto Kid: Helping Your Child Succeed on the Ketogenic Diet -I've heard Deborah Snyder speak in an interview about her experiences.