Wednesday, June 16, 2010

The Special Needs Parent To-Do List



√ Get parents/siblings/relatives/neighbors/mailman etc. to pitch in with caregiving.

√ Figure out way to get my child twenty zillion trillion more sessions of therapy. Preferably for free.

√ Spend more time just kissing, cuddling and playing with child—equally important as therapy. Maybe more so.

√ Get child onto cover of Toys 'R Us Toy Guide For Differently-Abled Kids and/or People magazine.

√ Teach child to quit whining. Or teach child to only whine to spouse.

√ Invent flying wheelchair/blast-off foot braces/drool-proof shirts/magic wand you can wave over people that'll make them quit staring and/or turn them into toads.

√ Stop comparing child to other children.

√ Stop comparing myself to other moms. They may have "typical" kids, but I have a smaller [FILL IN THE BLANK] and a bigger [FILL IN THE BLANK].

√ Suggest BYO IEPs. Teachers and therapists bring the progress reports, I'll bring the mojitos! So much more fun!

√ Organize boycott of overpriced toy and equipment catalogs that rip off parents of kids with special needs. Also, tell their mothers.

√ Come up with cooler term than "special needs."

√ Take time for myself that doesn't involve a supermarket, a doctor's office, Home Depot or The Motor Vehicles Department.

√ Quit wondering what child will "be like" when he's older and focus on awesome stuff he's doing now, including the excellent cuddling skills.

√ Invite Michelle Obama to guest post—way to raise awareness! Maybe President, too! Or Justin Bieber? The Pope???

√ Check to see that my sanity is still intact. It was the last time I looked, but you never know.

√ Breathe.


istock/mark wragg

34 comments:

  1. My favorite: "Teach child to quit whining. Or teach child to only whine to spouse." Ha! xo

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  2. I want to teach my son to wipe his own nose. I'd trade that for more time in diapers/later potty training today. But then 3 of us (including me) are sick right now and I've about had my fill of snot.

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  3. Love the idea of BYO IEP meetings. I think we could get our teacher to go for that.

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  4. Love the one about the high end equipment and toys....it's amazing how much "therapy" you can get out of a cartoon character oven mitt and a cleverly fashioned tube sock puppet--and they cost five bucks a pack at Walmart!

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  5. I find that now that my son is almost 15, my list needs to include reminders that I note when he's successful with appropriate interactions.

    And I'd like to teach him to quit cursing...he sounds like a sailor on shore leave.

    And as I get older and older, and as he is approaching adulthood, I often worry and ponder about what his life will be, and what he'll ever do without me.

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  6. Hahaha, not what I expected from that title! Very funny :D

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  7. great ideas! Breathe being the most important for any mom. I better title? How about just a "well loved" child. Have a great week!
    Faythe @GMT

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  8. As an ESE teacher...I LOVE "Suggest BYO IEPs. Teachers and therapists bring the progress reports, I'll bring the mojitos! So much more fun!" It would definately make those meetings more fun! :)

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  9. Reading this list was a great way to start my morning. Possibly even better than this cup of coffee here. Which reminds me: I'd add that to the list... stronger coffee!

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  10. He HE hE, Ellen, You are so funny! I like the one about the magic wand! You always know how to make me laugh in the mornings...

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  11. Like. Ellen, I hope that someday I am half as good a mom as you are.

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  12. Great post! I really like the one about whining. We have been dealing with A LOT of whining around here!

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  13. Ahhhh! I LOVE the BYO IEPs!! I brought yummy treats for certain meetings this past year (parents that were nice to me/meetings I knew would be tough emotionally) and it ALWAYS made them more fun. Instant calm. Made the parents relax and less likely to yell when we had something negative to say about their child. Side note, speakng for most teachers out there, we don't enjoy that part. Really, I hate bursting the bubble of hope, but it is really important to mention "your child throwing desks all day long caused a slack in acadmics this year, ergo they still can't read".

    Next time though, I'll skip the brownies and make them drinks.

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  14. We want the magic wand over here...especially since my boys are 13 now and HATE having people stare at and/or show pity to them....great list!!

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  15. Love it! Thanks for putting a smile on my face!

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  16. Had many giggles about your list. :) I think I'm going to have to read your whole blog to get to "know" you and Max. :) (I'm a parent of a CP child too.)

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  17. Love this...and can relate to alot of it myself...

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  18. Sorry, but I don't plan to stop whining for a while. I'm pretty sure Max doesn't either.
    I do whine more to Mom than Dad...shhh! It's a secret!

    I think you forgot to add "grow eight arms" to your list. Oh yea & my Mom always wishes for eyes in the back of her head.

    Tell Max, HI!
    ps...what's a mojito????

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  19. BYO IEP would be awesome. Really. I think I might bring cookies to Charlie's next one.

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  20. As usual, I can totally relate to a million of these, such as "get my kid into eleventy billion more therapy sessions FOR FREE!!!"

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  21. The term "Special Needs" has always bugged me. I much prefer;

    "Especially Needy"

    Oh, and to add one to your list:

    Pound into heads of all relatives:

    "He. Can't. Hear. You."

    And have them learn sign language.

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  22. This is off-topic, but I just wanted to share this with you in case you hadn't seen it: http://myown.oprah.com/audition/index.html?request=video_details&response_id=5615&promo_id=1.

    It's a young man named Zach who has sent in an amazing audition for a show that Oprah is giving away. He has CP and wants to do a travel show.

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  23. Great post as usual! I think learning more sign language is a definate I think Hailey is getting more frustrated because she wants to say so much more and we don't know how. If anyone has any suggestions on how to go beyond the few basic signs please let me know. Ellen I also entered that children's book contest. Could sure use everyones vote http://sleepbetter.org/bedtimestories/goodnight-bella/#comment-57169405 Thanks :)

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  24. Great ideas...I like the remember to breathe. very true and alot of moms can relate!

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  25. Signing Time DVDs are the best way to go about learning (ASL) sign language for families. Hands down.

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  26. Janet (may I call you Grammy?!), I tweeted your q about signing and people said the same as Janis, Signing Time videos are great. Someone also mentioned the sign4meapp for the iPhone

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  27. I second the praise of Signing Times (http://www.signingtime.com/)My youngest had 12 words at 27 months old when he got his apraxia dignosis. His SLP suggested we borrow a few signing time DVDs from our local library to see if we liked them. Within a week he was signing several words.She wrote a goal for them, and EI bought them for us. My older two kids ( then 8 and 12) actually fought to watch the DVDs with their brother! He willingly watched them like 6 hours a day, and I picked up quite a few signs without even trying ( the review songs are rather catchy...)

    a friend of mine who is a foster mother, said she learned more from the DVDs I lent her than she did from the required ASL class.

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  28. O. M. G. You are so funny. I will suggest mojitos (maybe mimosas, if it's in the morning?) for our upcoming IEP meeting!

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  29. "Suggest BYO IEPs. Teachers and therapists bring the progress reports, I'll bring the mojitos! So much more fun!"

    Yes please. As a teacher, I fully support that. :)

    Love the list!

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  30. love this! def need to figure out how to enact the 'teach child to only whine to spouse (or grandma!)' lol

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Thanks for sharing!