Thursday, March 30, 2006

A Letter to Bill Gates

Dear Son is fourteen years old now and has finally outgrown Barney. I say finally, because Barney has been his best friend since he was six years old. He received Barney as a gift from my brother, Mike, or Uncle Mike as he is known to Dear Son. I remember first hearing about the Acti-Mates Barney* and I actually nixed the idea because I didn’t think that Dear Son would like him. I couldn’t have been more wrong.

Dear Son fell in love with the big purple guy, as I affectionately call him, immediately. Barney was loved more than any child could love someone. He was as dog eared as he could be and I went through six AA batteries every two weeks for the big guy. Dear Son would roll around on the carpet with Barney and take his mouth and bite on Barney’s foot to activate him. When he did this, Barney would talk or sing. If he bit Barney’s hand, Barney would play a game. When he rolled over on Barney’s eyes, Barney would play peek-a-boo. More importantly, Barney could also be activated with Dear Son’s left foot. Barney went everywhere with Dear Son; I even had a Barney for the car, so I would never forget him. When Dear Son had eye surgery to straighten his one eye, Barney’s big purple fur wiped away his tears. He also accompanied Dear Son on every one of his forty three hospitalizations, and always made Dear Son feel better. At home, Dear Son had no siblings or playmates. But he always had Barney. Dear Son couldn’t love Barney any more than he did. I am always reminded of this when I take Dear Son to the ped neuro doc. There is a poster of the Velveteen Rabbit on the wall with a quote that says, “When you love someone long enough, they become real.” In Dear Son’s world, Barney was definitely real.

Toy shopping for Dear Son was always challenging. I had spent my early years with Dear Son at Lekotek, trying to find toys he would like. I also spent some time with him at the Rehabilitation Institute of Chicago while they tried to determine the reason for his lack of hand/arm function. At Christmas time, I would walk through Toys R Us weeks ahead of time searching for any toy that might work for Dear Son. Dear Son is severely retarded (due to a rare gene) and can’t walk or talk and has no use of his hands and arms. When you are severely physically and severely mentally disabled, that pretty much eliminates 90% of the toys in there. When he was younger, he could remain in a seated position but needed things with taller backs or straps to support him. Because of the lack of any suitable toys for him, Barney was flat out his favorite toy and best friend.

Now if you are a Mom or Dad, you know how important, “the” toy is to your children. You CAN NOT be without it. Not for a minute, not for an hour, not for a day or heavens, certainly not for a week! When Barney’s arms would split open from Dear Son biting on it and the wires would pop out, I would have to buy a new one. No problem. Until, “it” finally happened. Microsoft, who formerly made the Acti-Mates Barney that Dear Son loved, discontinued it in 2000. At the time, I heard rumors they sold it to Playskool, but I could not verify that information. The new Barney’s that Playskool did make however, did not function like the Acti-Mates Barney and therefore was no longer functional for kids like dear son. Instead, I had to resort to buying up other people’s Acti-Mates Barney’s on eBay.

So now, my problem is solved. Dear Son has finally outgrown Barney. I don’t need to do this any more. But, there are lots of kids out there like Dear Son who have no one to talk to because they can’t talk, no bikes to ride because they can’t sit up, no swings to swing because their parents can’t afford the $600 swings with the taller backs, no remote control cars because their hands don’t work, no video games for the same reason and the list goes on and on. Yes, I know there are other interactive toys on the market, but Dear Son didn’t like any of them, he only liked his Barney. So if “Dear Son” could write a letter to Bill Gates, it would be:

Dear Bill,

Please bring back the Acti-Mates Barney so other boys like me can have a real friend too.


Dear Son

*Note: In February, 1997, Microsoft introduced Barney, the first Acti-Mates product at $109.95. The Acti-Mates line was a series of seven character toys (Barney, Arthur, D.W., and the 4 Teletubbies) released by Microsoft. In 1997, the Acti-Mates Barney was a hot Christmas item; Microsoft quietly discontinued the toys in 2000. You can read more here at:


Kim said...

Ah, I saved your best post for last.
Dear son has beautiful eyes - he's a handsome kid!

I will thank God everytime I see a Barney that your son was able to have a toy that gave him so much pleasure.

I really love your blog and would love to link it to mine. I have a blog section for patients.

If that is not okay, please let me know.

Kelly said...

I have had the same problem---finding things for Michaela to play with when she can't talk or get her hands to work. It's so frustrating!

Glad that Dear Son had his special friend for as long as he did. Perhaps you'll come across another special "toy" that'll last him another 6-8 just never know. I'll be sure to let you know if I spot something promising :)

Wrkinprogress said...

Well, I can't hate Barney any more, now that I've heard this beautiful story. And I agree with Kim -- dear son is a beautiful boy, with very expressive eyes. I see that he shares that lovely smooth skin that my grandson has -- I always marvel at how perfect it is.

Write that letter to Bill Gates and whoever else you think might be involved. You never know -- you could be the one that makes the difference.

Have a beautiful day, dear lady.


Fat Doctor said...

You never told us dear son is so gorgeous! Must make your heart melt to look into those big eyes...

Dream Mom said...

Thanks, Kim.

Kelly, yes it's a challenge finding toys for them but when you find something they love, it's wonderful.

WIP-I always think that these special needs children are so beautiful, not just mine, but most of them. I don't know how much is their real beauty or how much is because they live every day from their heart. It doesn't matter in the long run because you always get so much more from them than you give. You have already learned that, I know.

BigMamaDoc-You are so sweet!

zoe said...

Just wondering Dream Mom if an adaptation could not be made to a remote for the t.v. that your son could use in the same way that he used to bite on Barneys foot to acivate him. Could he bite on a remote to turn on the t.v. or change channels? Or possibly the remote to a CD player if your son likes music. I understand the challenges put before you on finding toys or activities given the limitations your son lives with. I have spent twenty years continually "thinking outside the box" and adapting things for my son who is disabled and is now 23. I am very sure that you have done the same also and have probably already considered these suggestions. Just thought I would throw them out there!

Dream Mom said...

Zoe-Good idea. Dear Son is severely mentally retarded so I am not sure he would have the mental capacity to change and/or want to change the channels even if I could figure out a way he could do it physically.

I am sure after raising your son for 23 years that you have a lot of good ideas. You are right, you have to constantly think outside the box.

Thanks for the idea.

Danielle said...

Ah- the toy challenge! I am glad you, as a mom, adressed this. It is hard to buy for a child who cannot really "play" with toys. And there are only so many videos and cd's a kid can take. LOL

Great pic of dear son!

Anonymous said...

What a beautiful son! He has the most mesmerizing eyes...Good soul...draws you in...

Isn't it great to be in love?

Dream Mom said...

Thanks, Lois!

michelle said...

hello again, DreamMom. I just wanted to tell you your boy is beautiful. And I agree, kids with disabilities have an ethereal, fragile beauty, my daughter is so beautiful in my eyes. Your
We are fellow Barney travelers, too. There just arent that many new barne toys out there nowadays. Ciarra has SO many Barneys, and Barney movies!
I was curious if you had ever take ds on any kind of wish trip? It would be so awesome. My daughter had one very recently. Guess what her dream was? To meet BARNEY! We went to Universal, and I cant even tell you how wonderfully kind and generous they were with her. I hope ds hasnt yet had a dream trip and can maybe find out about meeting barney, for old time's sake. ;) Give the handsome man a little kiss on the top of his head and tell him he is in our prayers.

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