How Do You Find Peace?
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.
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
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!
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.
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
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
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!).
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
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
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.
New Yahoo! Site: Ideas for Toys and Gifts
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?
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.





