Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Friday, April 15, 2011

New Life Saving Tools for Parents of Children with Special Needs

OK, lately I've been thinking a lot about important tools I could really use, tools to make me a happier, healthier mother of my two children.

Here's what I have come up with......

I need one of these...


How great would it be to have someone to drive us to all of our doctor's appointments, our school meetings, our 2 am visits to the ER? No more driving in Boston, no more negotiating the harrowing halls of the parking garage at Children's Hospital, no more rush hour traffic, no more finding a place to park. How great would it be to have a glass (or two) of champagne before Nicholas's next EEG or IEP?


Of course Weston would prefer to ride in a limo that looks more like this...



I think he would pass out in total shock, if I ever came to school and picked him up in this!!!!!

Me? I would much prefer one of these......



Then of course another important tool I need to make me a better mother, is one of these.....


Voila, warm delicious healthy meals prepared especially for us every night!

No more....
"Mom, what's for dinner?"
"Aw man, hot dogs again!"

No more staring in the refrigerator wondering what I am going to prepare for supper. No more searching for new recipes for something....anything different!

But most importantly, no more dirty dishes because of course we would have one of these.....

And to clean the rest of the house, I would need these.....



My husband and I would need to have some time alone together. So we would need someone experienced in caring for children diagnosed with special needs. Perhaps one of these?



Although I think both boys would prefer....


Now, to handle insurance companies and IEP's, I would need this......

What did you say? No occupational services available to Weston at school this year? I'm sorry, please let me introduce you to my new team!

What's that? The expensive seizure medication for Nicholas is not covered under our insurance plan? I'm sorry would you kindly speak to my new team of representatives!!!!!!

Then of course another tool I need .....to handle bills, grocery shopping, dry cleaning, school supplies, prescription pick-up etc...I would need one of these.....a personal assistant!



Oh, and to keep me healthy and in great physical shape.......



Although, perhaps, he is available?



Then, after a long day of diffusing temper tantrums and answering "but why?" questions, I need a tool for rest and relaxation, perhaps one of these...


And for entertainment......



 And for the kids to burn off their excess energy......this......


And finally, to help us plan for our many vacations... we would need one of these...



To help us find this.....



Imagine what life would be like to have more time......


For just this........It's a beautiful dream!

3 comments:

Terry Guinn said...

God only gives us what we can handle and provides all that we need. For everything else we pray... And play the lottery! Test me Lord!!!

I see many job creation opportunities in your post. You would be helping so many, especially with the "Monster Limo" that could brighten a child's day with a ride around the parking lot (over the parked cars). I keep dreaming about helping many people and organizations financially with a big lottery win... But God isn't yet convinced that blessing me with lots of money is a good thing. Still, I will play the lottery now and then... In case he changes his mind. lol

Elizabeth said...

I love this and would agree with all of it except for the personal chef as I'm married to a chef (and trust me, it's not romantic or great as he works 24/7). I'd also add in a masseuse -- at least once a week!

The Henrys said...

This is amazing!! I don't think I could add a single thing to this list. Well, maybe a dog trainer to help out with our new puppy!

I think all of these are great, but the one that would help the most is the team of lawyers. Oh what a nice thought that is, to introduce them to the school and the insurance companies!

Thanks for posting this!

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