The disAbility Support Network

How Do You Find Peace?

noreply@blogger.com (Lorna) — Sun, 06 Dec 2009 09:40:00 +0000

What better time to write about finding inner-peace than during the Holidays? Here is my story. I hope that I can touch at least one person in a positive way with this post...

I remember all too well the horrible feeling I had when it actually sunk in that our son Nick was severely disabled. It took awhile....a few months after we received the 'diagnoses'. I don't know if I was in denial, or if it's just human nature to protect our psyche by suppressing our feelings as much as possible at first so that we can cope with the day-to-day care of our loved one with Special Needs.

Once our daily routine was down pat and I wasn't constantly worried that I had forgotten to give him one of his many medications, I had time to think about our new way of life. Having time to think isn't always a good thing. Your mind can run rampant with awful thoughts and way too many questions. It was at this point that the disbelief of the whole situation hit me like a freight train. Why doesn't anyone warn you that such tragedies can happen in our lives? I can remember just sitting on the floor in Nick's room and crying, as if doing so might possibly change his life.

This was 14 years ago, and it wasn't until just recently that I realized that I, out of anyone, should have realized that such things can happen. My own Dad was hurt on the job, and is paralyzed from the waist down. It has happened in my life. But not to my child....it is so completely different when something happens to your own child. And I must say, I give my mom and dad so much credit for coping as well has they have. Obviously, they have had a positive attitude towards my dad's situation or it wouldn't have taken me so long to realize that my own dad has Special Needs. Funny how I had never looked at him in that light before.

Once I had my time to think too much, 14 years ago, the quest to find all the 'answers' began. What therapies does he need. What special doctors should we be visiting on a regular basis. Will he ever walk? Will he talk? Will he....and on it goes. And to top off the fact that Nick has Cerebral Palsy, Cortical Vision Impairment and is cognitively very delayed, we also had the issue of kidney failure to deal with. So therein lies another question - how long will it be before we need to start screening for a kidney donor?

So many questions. And to my dismay, no concrete answers. Ever. And I do mean never, ever. We've been to all the specialists. I've scoured the Internet and joined support groups. He may walk someday. He may talk someday. He had a kidney transplant at age 5, but no one can tell us how long his body will reap the benefits. Guess what? Doctors really don't know everything. So there I was, still plagued with questions, unable to truly be at peace with the whole situation.

Years go by, and to my pleasant surprise, I realize that at some point I have found peace without even trying. Was it time that helped heal the pain? Did someone say something that impacted me in a positive way? I honestly don't know. But while reading a message posted on a support group by a woman that asked 'how do you deal with the frustration when dealing with our special kids', I was able to sit and put into words how I now feel. Other people said things like they pray, or take a deep breath or cry. Perhaps I didn't quite answer her question, but here was my reply:

"For me, I had to find peace with our son's diagnoses and all the issues that arise from them. I had to FULLY accept him, as he is, and not worry about what he will ultimately be able to do for himself. I had to stop asking those 'questions', realize that no one, not even all the doctors, would be able to tell me specifically what the 'final outcome' would be. I had to stop expecting too much and being disappointed, and learn to just live life. His cerebral palsy and cognitive abilities and health issues had to no longer be first and foremost in our lives. I used to join every support group, research, research, research...I would drive myself absolutely crazy with it all. Now I'm just happy that he's happy. It took me years and years to come to peace with it...he's 14 now. But it did come, and my inner peace radiates to him, and he's a happier boy for it, too. It helps him to accept himself for who he is...."

I am in no way saying that we've stopped trying to help Nick become all that he can become. I've just stopped dwelling on everything and have learned to prioritize things as best as one can be expected to. It's the only way I can remain sane, at least for a little while. Nor am I saying that I don't still have my struggles. After all, I am only human.

As for my reply to this woman's cry for help, I touched at least one person (though not the woman asking for help). This other woman thanked me for my words, and said how she needed to hear that she wasn't the only one with these feelings. It is her response that prompted me to write this particular blog...in hopes that it reaches someone else that needs to hear that 'you are not the only one'. And with any luck, this person will find their own inner peace and will be able to go on with life. It truly is bliss, and that Special Needs person in your life does just what the 'label' implies: makes it Special.

Happy Holiday's Everyone!

Switches, Switch Toys and What Worked for Our Son

noreply@blogger.com (Lorna) — Fri, 27 Nov 2009 08:32:00 +0000

One thing that lots of special needs people use is switches. They can be used to activate toys (cause and reaction), to help them communicate, and to interact with others.

Nick was introduced to switches probably 10 years ago or so. The success rate for him activating the switch was probably as low as 0% - 5% when he first started out. And it didn't improve much over time. We weren't sure if he just wasn't interested, or just didn't grasp the concept.

That was until for some reason someone, and I don't even remember who (probably his dad), put their hand on his non-dominant hand at the moment he was supposed to activate the switch. And whalah! He hit the switch! Why? Hmmm... not sure. Reflex? It helped him focus? Weighted products are huge with him. Whatever it is, it bumped his success rate waaaay up there.

And it doesn't only work with switches. We also have those large, wooden puzzles with the fat handles to remove the pieces. You can put the puzzle in front of him and he'll enjoy looking at the pictures. But put your hand on his non-dominant hand and he'll immediately grab one of the pieces. I'd say it works 95% of the time.
So, I'm not saying that this technique would work for everyone. Not at all. I'm just saying that it definitely worked with Nick.

Just a little tid-bit of info that might help someone out there. I'd also like to mention that in our Shopping and Reviews section under Switch Toys, you will find lots of switch-adapted toys listed. Some of the toys were listed by one of our members, Eva. She even took the time to add videos to her listings, so you can see just how cute these toys are in action, and a link to her website so you can buy them. :0)

You can also find cool little add-ons for switches, like this timer. Once the switch is activated, you can control how long the activation lasts. For instance, if it activates a toy that moves, the toy will move the the specified amount of time. Our son would get very frustrated if his effort in activating the switch toy only lasted a second., so we like to use a timer.

Something that pretty much everyone needs to learn at some point is sharing and cooperating with others. Switch toys can help with this, too. Use an adapter that allows you to hook up more than one switch to a toy (or multiple toys) and let the fun begin!

Team Switch - connect to up to 3 switches.

Still need more options? No problem! Buy a switch with two buttons so that a person can choose between two different rewards, such as a toy or a radio. An example of this would be the Talk2 Communicator.

Talk2 Communicator

Additional Resources

And did you know that there is a very large selection of switches? From string switches and Big Mac Switches, to those little strips of metal beads that hang down in strings. You can find a large list of switches in the Shopping and Reviews section on The disAbility Support Network's Community area!

You can also find a list of switch-adapted toys as well. Some listings even include videos so that you can see exactly how the toys work with a switch.

Please visit The disAbility Support Network for more great Special Needs Products and to join our network. Membership is completely FREE for everyone :0)

I hope this information is helpful :0). If you found this information to be helpful, please sign up to receive web site updates. Just look for the little Updates box in the upper right hand corner. Enter in your email address and follow the instructions. You can sign up for updates on this blog, or you can choose to go to our main web site and sign up for updates there.

And if you aren't already a member of our network, please join! Membership is completely free. You can meet new friends, share stories, tips, tricks, sell your used equipment and more.

Here to Help with Christmas Shopping for Special Needs People

noreply@blogger.com (Lorna) — Fri, 27 Nov 2009 08:05:00 +0000

With the Christmas just around the corner, now would be a great time to add your favorite products to the Shopping and Reviews section in our Community. This section was created to help our members choose gifts and toys for special needs people (and their caretakers!). And it is more than just a simple list of products. When filling out the form for a new submission, you include information such as:

Age group
Price range
Area that the item is helpful in (gross motor, fine motor, visual, etc.)
Who the product is appropriate for (special needs person, caretaker, any child)
YouTube video ID #, so you can display a video of the product if you wish
Amazon ASIN (product ID#) if you wish

New fields can be added by me if you feel there are more needed. I'm here to help make things as informative and simple as possible!

Where to Shop for Special Needs Products?
Often times you can find great gifts at your regular old store, such as Walmart, Toys R Us, and if you like to order items online (like I do), Amazon is a great source for everything from daily care items like toothbrushes to the kitchen sink (literally, I checked!).

There are also lots of great special needs catalogs that you can order, or even order from these specialty stores online. An example of a great specialty store would be Adaptive Play, where you can find all kinds of great switch adapted toys. These adapted toys were hard to come by, but we have a recent member, Eva, who is an Early Intervention Specialist and is also co-founder of Adaptive Play. She has been kind enough to submit many of these toys to our Products and Reviews section, complete with videos so you can see the toys in action! Thank you Eva, for all of your hard work!

So.....

So please don't be shy about adding products to the Shopping and Reviews section. Even if you are the representative of the company that sells the product(s). You'll be helping the rest of our members have a more pleasant shopping experience this Christmas!

Happy Holidays!

Lorna

* The links to some products listed may have my affiliate code included, and I reserve the right to add this code if possible. This means that I receive a small % of the sale. This is what keeps The disAbility Support Network up and running :)

Education Disguised as Fun: Nick Jr. Boost

noreply@blogger.com (Lorna) — Tue, 24 Nov 2009 15:08:00 +0000

I've been in search of some unique gift ideas for this Holiday Season and have been busy adding products to our online network called Shopping and Reviews. You can quickly find products that will help in certain areas: fine motor, gross motor, sensory, etc.. You can search by age, and even by price range.

Today I added an online service for kids from Nickelodeon. It's called Nick Jr. Boost. It's target audience is preschoolers up to first grade. It cleverly disguises learning through what kids are most interested in - FUN. Not only do they get to be BIG kids and use the computer to go online, but they will be interacting with their favorite Nickelodeon characters while sharpening their skills for school.

They are rewarded for their efforts with digital rewards. And mom and dad aren't kept in the dark of their progress. The Parent Center is designed to keep them in the loop, providing an inside glimpse of their child's progress. As kids complete activities or advance to the next level, Nick Jr. Boost clues you in on new achievements and skills. Just as important, if your child is struggling in a particular area, Nick Jr. Boost sends a heads-up plus tips for easy, do-together games and activities to help your child master that challenge.
And that's not all, mom and dad!

There's a 7 day free trial!
One very affordable monthly subscription can be used for up to 6 kids!
With your paid subscription, you will receive Nick Jr.'s Time for Play DVD (NOTE: The cost of pre-paid cards does not include a Nick Jr. DVD).
This gift won't get lost in the toy box ;0)

Switching From Mic-Key to NUTRIPORT G-Tube

noreply@blogger.com (Lorna) — Fri, 20 Nov 2009 09:34:00 +0000

We just got a letter from our medical supply company yesterday stating that the $ of Mic-Key buttons has gone up and our insurance won't cover it. They're phasing it out of their stock completely and replacing the Mic-Key with
a new brand of skin level g-tubes called NutriPort (Kendall Healthcare). I hate changes when it comes to Nick's supplies & meds. Especially when he's in 'a good place' with no current issues to be worked out like he is now. This new button seems like it may or not be better.
Points made in the literature:

Made of silicone (softer).
It has raised feet for greater air flow resulting in a healthier stoma site. But does that mean that shirts, etc. will get caught underneath?
The balloon is supposed to last for at least 90 days. We replace Nick's button every 30. Not because the balloon is bad, but because it's nasty with germs. The stoma site gets all red and sore quickly after the Calmoseptine ointment that we use wears off. Who knows what it looks like between the inside where the balloon is and the outside that we can see. He has a suppressed immune system, so maybe this is contributing to this issue. I really hope this doesn't mean infection problems are on the way because insurance will only pay to replace the button every 3 months!
Allows the parent/patient the option to actively lock the extension set or passively lock the extension set. So, not more tubes spinning and getting disconnected, or not pushed in all the way? That'll be nice.

I had a great system for not feeding the bed when he was tube fed. Now we only use the button for extra fluids and meds, but it's like I have OCD or something...I check to make sure the extension's locked probably 3 times before I start giving him water/meds! LOL!

New Yahoo! Site: Ideas for Toys and Gifts

noreply@blogger.com (Lorna) — Wed, 18 Nov 2009 17:14:00 +0000

Too soon to think of Christmas? Probably not if you want to take advantage of ordering online rather than exposing you and your family to this H1N1 that's going around. But choosing gifts can be time consuming and frustrating if you don't know where to start.

I've created a couple of Squidoo Lenses for shopping ideas. And I've also started a Yahoo! group on the subject. I'm sure there are lots of great gifts that many of us would never even think of. Besides suggestion toys/gifts, you're also welcome to post a WISH LIST with your Yahoo! username and send the Group link along to friends and family so they can see what you and your family would like for Christmas and throughout the year. It will also be a great database of ideas.

Squidoo Lenses. Scroll down to the bottom to see a list. I'd post them individually, but I plan on adding more.

http://www.squidoo.com/lensmasters/ldoone88

Yahoo Group:

http://health.groups.yahoo.com/group/giftsandtoysforspecialneedskids/

Hope to see you there!

Ok, Just Exactly What IS The disAbility Support Network?

noreply@blogger.com (Lorna) — Thu, 12 Nov 2009 15:54:00 +0000

I'm sure many of you are wondering what The disAbility Support Network is, exactly. It's a Facebook style community, but with a whole lot more. What you're reading now is simply a blog for the actual site, a way to post interesting information and to try to entice more people to join the network. The actual network is located here:

http://network.disabilitysupportnetwork.com

I'll give you a run down on the features that you'll find there. It's a new network, so I'm hoping that people will decide to join in and start networking and adding content to the site.

The site is member-driven. What this means is that every member can contribute to the content of this site. Whether your interest here is personal or business related, you are welcome to contribute. If you represent a business or organization, this is the perfect venue for reaching your intended audience. Meet them on their own turf rather than having them go to you. Create a group for your business, add it to the yellow pages, add events to the calendar and reviews for your products. But please respect our members and do not spam them. I'm sure you can guess what will happen to anyone's account, not just a business, if they're found to be abusing this site. That aside...

One very important thing to remember is that this site will evolve over time. The more you tell others about this site, and the more everyone contributes to the content here, the better a resource it will be for everyone. And not much here is set in stone. If you would like to see a new feature, new blog category and so on, please don't hesitate to add your request to the Feature Request Group.
Here you can:

Read disAbility News through The disAbility Support Network's Twitter account and Google RSS feeds. For your convenience, you can find both of these on the disAbility News page through the Main Menu above.
Connect with other people! This is one of the main features here. If you are a member of Facebook, you know how easy it is to find others with the same interest as you, or in the same geographical area as you. When you find a member that you wish to connect with, you send a 'friend request' and await their approval. Once approved, they are added to your list of friends. The same holds true here. Whether you are looking for other parents of a child with a particular diagnosis, or other professionals in the same field as you. It can all be done quickly and easily. Just use the Advanced Search search feature.
Add and subscribe to Events.
Find and add resources in the Yellow Pages. You can add any resource you like so long as it has something to do with Special Needs. And the unique feature about the Yellow Pages here is that YouTube videos can be embedded into the ad.
Classified Ads. Free for members to post special needs equipment and supplies for sale or donation. The general public can view them.
Review your favorite, or least favorite products. One thing I've found is that some things that I buy for our son are awesome, and some are just plain crap. So I thought allowing people to add product reviews would be helpful. If you know that you can find it on Amazon, you can even add the ASIN (Amazon Standard Identification Number) if you want so others can find it quickly. *
Tweet to your Twitter account: Yellow Page listings, Classified Ads and Reviews. Your own listings and others that you like.
Create a list of your favorite Yellow Page, Classified Ad and Review listings.
Blogging. We have blogs here, too. Categorized and with tag clouds, you can find what you're interested in.
Helpful Hints: whether you've discovered an easier way of doing something, or hints on getting approved for a service, please share it with everyone else! You could save someone a whole lot of time and aggravation!
Join and create Groups. You can create a group for a particular diagnosis, profession, or concern. Group founders can post announcements under the Group, invite members and decide if the Group is open to all members or if you need to approve new Group members.
Share photos.
Share personal videos. This is my favorite feature. Pictures are great, but videos are even more fun. One thing, video sizes are huge, and they eat up bandwidth (this equals very expensive hosting). Therefore, we need to utilize third party sites like YouTube or Yahoo! for storing the video. But everyone can browse and watch the videos here, on this site. All you do is upload the video to the third party site, go to our Video area here and add the link. The Video section is organized by Member's Videos & Other Videos, so if you find a public video that you think others will really enjoy, and the video allows embedding, you can add those here as well. Check it out, you'll see what I mean. It is very cool!
Share other videos that you find. YouTube, Yahoo! and more. They're full of fun and informative videos, and many of them can be pulled into our video section.
Use the internal messaging system to send and receive messages from people in your list of friends.
Invite people who are not yet members to become a member here.
Subscribe to the Newsletter.

Not enough to do? There will be a recipe section soon. Many of us, or those that we care for, have special diets to conform to and this site will be a great way to share your recipes. Suggestions on other site features are always welcome. There's even a group for suggestions!

I sincerely hope that you find this site to be a great resource and a whole lot of fun!

Gifts for Parents of Special Needs Kids

noreply@blogger.com (Lorna) — Thu, 12 Nov 2009 15:41:00 +0000

I recently created a list of gifts for special needs kids. But what about mom and dad? I think we all like to receive gifts, no matter how old we may be.

So, here's a list of gifts that mom might like. I have NO idea what dads might like, sorry about that!

http://www.squidoo.com/gifts-for-moms-of-special-needs-kids

HAPPY SHOPPING!

Choosing Toys and Gifts for Special Needs Kids

noreply@blogger.com (Lorna) — Thu, 12 Nov 2009 08:26:00 +0000

Christmas is just around the corner. I'm hoping to get my shopping done long before the holiday rush. Especially since the H1N1 has actually closed schools around here. One thing that I've noticed over the years is that my own mom tends to leave Nick out of the loop when giving Christmas gifts. I never understood that. She'd buy his brother a gift, all my sister's kids a gift, but not Nick. Why??? He's just a kid like all the other kids. I don't think he understands that he was left out, but he certainly does get excited about Christmas. He knows that he's going to be getting new toys, and he looks forward to it. So I had to think about why he'd be left out, without getting upset about it.

I couldn't imagine that it was because she didn't love her grandson. Then it dawned on me. She probably has no idea what to buy for him. He's 14 years old now, but congnitively he's closer to 18 months. Sure, she could buy him some more baby toys. But we have toy boxes full of them.

Then it dawned on me that there are probably many, many people that are in the same boat that she's in. Afraid to ask the parents what to buy, and remain clueless. With this in mind, I created a long list of gift giving ideas. You can find it on Squidoo:

http://www.squidoo.com/specialneedsgifts

It's full of ideas, direct links to products, and even a couple of YouTube videos that show kids actually playing with gift suggestions. I hope the list is helpful :0)

Happy Shopping!

G-tube Feeding: How to NOT Feed the Bed!

noreply@blogger.com (Lorna) — Tue, 03 Nov 2009 08:05:00 +0000

When our son Nick was fed overnight (for years & years), this is how I attached the tubing to his mic-key button & diaper so that it didn't disconnect or twist & kink. 99% of the time, we made it through the night without a beeping pump and we NEVER fed the bed :)

We had to use the 24" feeding tube, not the 12". He'd wind up with the hard connector at his hip with the 12". Not good.

I would attach the feeding tube to the button, twisted as far as it would go. Turn the button if necessary so that the tube would run from the button, outward to the side a tiny bit (same side that the button's on, not the opposite), looped up just a bit, run across his middle, and down the opposite leg.

He wears diapers, so I would use duct tape to keep the tube attached to his diaper. Not too far to the side so that his leg would wind up laying on the hard part that connects to the feeding bag tube, but not in the crease above his leg where it would get kinked, either. Make sure the tape's stuck to the tube well, or you'll wind up with not enough slack running to the button. Not too much slack across his middle, or his hand/arm might catch it. But enough slack so that he could move & twist without having the taped tube pull on his button.

I kept the tubing under his shirt. Then I ran the tube down his leg, under his jammies, and out the leg hole.

If he wore sleeper jammies, I would just cut a little hole down by the ankle for the end of the tube. Sleeper jammies were the best because he couldn't get at the tubing, and sleeper jammies kept his diaper from falling down :) Poor kid has no butt! If anyone else is running into this diaper issue, homemade onesies were my answer to the problem. I got lazy and just used a small adult white t-shirt and would use a baby diaper pin at the crotch. Once he was in a small
adult diaper with the 2 strips of tape on either side, his diaper stopped falling down!

Anyways, the whole tube thing was kind of in the shape of the letter p, but the bottom of the loop starting closer to the right, not touching the left line (his button's on his left, my right).

Oh, and to keep the tube attached to his button so that I would be feeding him all night and not the bed, I would buy that self adhesive wrap and just wrap the feeding tube to the little flap that is usually plugging up the button when you're not using it for feeding. Does that make sense? In the morning, I would just slide it off the flap part and cut it off the tube. Too hard to try to unwrap it.

Eventually I stopped buying the self adhesive wrap at CVS/Walmart and started buying it at the tack shop. They make the same stuff, only heavy duty, and MUCH less expensive, for wrapping a horse's leg. I would just sit & cut 1-1/2" X 1/2" or so strips of the stuff and stick them to the roll so I would have enough cut to last me a long time. If you DO buy the stuff for horses, just check what it's made out of and watch for any skin reaction since it's made for a horse, not a person.

And to protect the skin from that inevitable stomach acid leakage, I have recently discovered calmoseptine ointment. Wish I had found this stuff 12 years ago! I had to have the pharmacy order it. No prescription needed.

Hope this helps someone sleep better. :)