Tuesday, January 18, 2011

25 Things That Make Special Needs Parenting Easier

1. Your child's smile.

2. Being unafraid to say "no." As in, "No, twice a week of speech therapy is not enough" and "No, I don't think my child can handle that" and "No, I am not Angelina Jolie, though I do bear a striking resemblance to her, I know."

3. Finding doctors who are good but also kind, supportive and non-jerk-like.

4. Trusting your gut.

5. Accepting that you are not a crappy parent if you don't do every single thing the therapists ask you to.

6. The kindness of strangers (but not the pity).

7. Peach Snapple. Or Diet Coke. Or the occasional glass of wine. Or whatever powers you through.

8. Silly time that cracks you both up and helps you remember although your child may have disabilities, he is not at all fun impaired.

9. Knowing that you are not alone. Blog, comment, post on a message board, join an e-loop, start a support group. There's major comfort in connecting.

10. Having at least one babysitter both you and your child are truly comfortable with.

11. Having a good cry as needed, then moving right along.

12. Takeout. Diapers and prescriptions by mail. Not ironing. Whatever you can do to have fewer to-dos.

13. Roping in all the therapists on a conference call at least once a year.

14. Believing—truly believing—that there is something wrong with the people who stare at your child, not your child. That mindshift alone will save you many hours of grief.

15. A looseleaf binder with Important Papers organized in whatever way makes sense to you. Yes, you will need a hole puncher. Bonus: They're good for getting out frustrations.

16. Time for yourself, out of the house. Repeat after me: This is not a luxury—it's a necessity.

17. Going with the flow. So your child won't leave home without his stack of 20 purple paper cups? OK, then! If it makes him comfortable and it won't get you arrested, do it.

18. Not looking too far into the future when your child is very young.

19. The passage of time. Few things give you better perspective.

20. Having a handy catchphrase you can use when people ask questions that unsettle you. Person: "Is he talking yet?" You: "Yes, in his own way!"

21. Making playdates with other kids who have special needs. Good for the kids, good for you.

22. Asking other parents and experts advice for resources and things—the adapted chair for the dining room table, shoes, apps, whatever—that will improve the quality of your child's life, and therefore yours as well. Also, asking therapists to adapt things in your life (like the phone) so your child can better use them.

23. Your child's kiss.

24. Hope.

25. You tell me.

49 comments:

  1. BEAUTIFUL post! I'm totally going to link to this. =D

    Chynna
    www.lilywolfwords.ca
    www.the-gift-blog.com
    www.seethewhiteelephants.blogspot.com

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  2. I had a horrible parenting a child-with-special-needs day. Thanks so much for this. Having my second cry of the day and it's ok. xo

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  3. Love this post! Just linked to on my facebook! :-)

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  4. Awesome!!! Love #6, it is hard to remember at time, but so true!!

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  5. For me, it's taking one of those days when all you can see is how far your child has to go - and somehow turning it around and looking back at how far they've come, instead.

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  6. I love posts like this. Sometimes we need these reminders.

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  7. So awesome!.....Hope is what I cling to always. And Racers smushface, gets me through the day!

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  8. Wonderful post. I once went to Sam's club with a large box full of large red plastic cups. It got my son through the trip, we got a lot of looks...oh well. You mentioned Apps, I just wanted say, how did we live without the iPad?!

    But most of all we need hope and a listening ear.

    Thanks for blogging and providing those to us!

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  9. Love love love this. Linked to it on FB also.

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  10. Thank you! I really enjoyed thinking on this one.

    jenB: Tomorrow WILL be better.

    Jamie: "Taking one of those days when all you can see is how far your child has to go - and somehow turning it around and looking back at how far they've come, instead"—YES! YES! YES!!!!!!!!

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  11. Yes, yes, yes, 25 times! Well, 24. My #25 (maybe an extension of #16) would be good friends who are *not* in the special needs community and hobbies that let me take a break from autism. Sometimes, my mind just needs a break.

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  12. Money.

    I know- I'm a cynic. But while you can't buy happiness, you can buy therapy time and caregiver time and therapeutic toys and apparatuses, and if the insurance company and board of ed both say no, you can still do it.

    Now that I've got that out of the way...

    Faith. And when you find out, through a simple moment, that your kid has internalized something that takes others years or decades to learn. Like happiness, or a personal relationship with God.

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  13. For me (in addition to a lot of these), it's about finding the funny. Sometimes, like you wrote a couple months ago I think, you just have to laugh about aspects of parenting kids with special powers. I mean today I made a joke to J's genetic counselor and she didn't know how to take it, so that was pretty funny. And M. has spent the past while getting increasingly agitated with each time I incorrectly guess the song he wants to listen to (it ended up being Taylor Swift's "Mine"...the boy inherited my taste in music, much to the extended family's chagrin). I think I need to ask his speech therapist to focus on making up signs for all of M's favorite artists! :-p

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  14. I gotta go with Staying Afloat (who isn't really a cynic, just realistic)--I think money has a place on the list, too--when you don't have it, you feel the absence. But supportive family is also way up there on my list--nothing like Mom and Dad, who pull more than their share of the load.

    Fantastic post as always, and I do love that picture as well!

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  15. Thank you!

    Number 14 is my favorite...Believing—truly believing—that there is something wrong with the people who stare at your child, not your child. That mindshift alone will save you many hours of grief.

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  16. Hi, Ellen, Love this post, great list! Things we all need to remind ourselves of on a daily basis.

    I think this is one for the refrigerator door, yes, indeed!

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  17. Great post! Love #1! My daughter has a smile that will melt anyone's heart. It brings me such joy to see that smile!

    Also love #3. We recently moved and have been getting new docs. Loving them so far! Very informative, helpful and also kind and compassionate. My daughter's new neuro asked me how I was doing with everything. Besides our previous pediatrician, I don't think any of our old specialists ever thought to ask such a thing. Love that!

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  18. Great post!!! Appreciating the littlest things!!

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  19. and...bloggers like you, letting us know we are not alone :)
    kct

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  20. I am not quite sure how I found your blog. I feel that stumble may have taken me here, but, as i have spent the better part of an hour looking through it, I can't quite be sure. I LOVE your blog! It has been great to read. I have worked with kids/campers/students/friends with a variety of special needs for the past 8 years. Some moms and dads are more than happy to share their world, and it helps when they do. I know that it is not my place to pry and so getting an honest peak in is very helpful! Your Max sounds amazing and many of his adventures, loves, and triumphs remind me of some of my favourites! Thank you for your wonderful writing!

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  21. Re: #14. I know I've told this story many times, so I apologize if you've read it before. When my son was in second or third grade, he had Tourette Syndrome, and had a lot of facial tics. We were in the line for a ride at Six Flags, and as we snaked through the line, we of course kept passing the same people again and again. This boy about Gabriel's age kept staring and staring at Gabriel every time we passed him. I was getting more and more anxious, and finally I stepped over to position myself between Gabriel and the boy. Just then, Gabriel leaned over and whispered to me, "See that boy over there? He's got an eye problem...he keeps staring." I've always treasured that moment of great insight!

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  22. Love #5- I struggle with the guilty feeling of not making every moment a teaching moment. I am finally living in the moment and boy it feels good.

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  23. Love, love, love this!!! So nice to know there are other Moms who just get where you are!!

    Anita
    http://anita-whyibelieve.blogspot.com/

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  24. My son Yedidya gives the best hugs- it doesn't solve everything but it does make me feel better after a hard day. Great post!

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  25. Well done, you nailed it.
    25. Make the caring for your child a family affair.
    Especially where siblings are concerned, especially when the level of compromise reaches higher levels, from special needs to severe disability to extreme disability.

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  26. Love this post, great things to remember, especially the saying "no" i'm going to go practice now!

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  27. YES! And no. And coffee. And giggles.

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  28. WOW...Ellen, every time I think you have 'peaked',you surprise me...LOVE this post, ESPECIALLY #14!!! I am aunt to an 18YO with Duchennes Muscular Dystrophy -- the staring is a particular trial to my nephew. I also LOVE the commenter whose son noticed a poor boy with 'eye problems' staring at him!!! I'm gonna use that some day...

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  29. Love #17. My daughter who is 14 with Down syndrome and non verbal carries 2 of my husbands tube socks, a blue ribbon and a strip of blue fleece with her everywhere. I have no idea why, but it is important to her so that's good enough for me! My #25 is the I-Pad, now others can see she has opinions and ideas!

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  30. Sometimes instead of telling yourself some people have it worse. Let yourself admit some people have it better. Not for long and often but once in awhile you need to go easier on yourself.

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  31. Just all kinds of awesome in this!! Both in the post itself and in the fantastic insights also found in the comments.

    Simply awesome.

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  32. Love it. Gonna Facebook it for all my friends to see.

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  33. Awww...loved this post. Just found you on the Blissdom Tribe list. I'm headed to Blissdom this year for the first time!

    Your list just reminded me that I am supposed to be looking online for size 7 diapers. We just can't squeeze size 6's on our now 8 year old boy any longer!!

    Can't wait to meet you next week.

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  34. LOVE this post!! You hit it on the nose...every one of them! Thanks for posting!

    Shauna
    http://johnsonspecialneeds.blogspot.com

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  35. Yeah. The *ahem* occasional glass of wine. Yeaaaah. That's the ticket.

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  36. Love this! I can add one more - having a teacher who goes out of her way to help your child.

    My son is 14 years old and is a non-verbal autist, and we've been blessed over the years to have encountered a few teachers who have been wonderful and dedicated. They have helped us overcome some development barriers and I am happy to say that we are still in regular contact today even though they've not taught Lucas for years already. Hats off!

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  37. I was prepared to do a lot of poo-pooing and eye-rolling after following a link here from Twitter, but you soon had me nodding in agreement and affirmation. I was touched, and not in a creepy Investigation Discovery kinda way.

    I would add the benefit of being around some non-special needs kids as well. To show those kids how normal our kids actually are and to show our kids some modeled behavior that would help them somewhere along the way.

    Thanks for this post. Love to Max.

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  38. I am posting this next to my mirror at home and on my desk at work. Might even write a few of these on random post-it notes as reminders to myself.

    Thanks for generating this very necessary list!

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  39. Great Post, Love it!
    My answer to the peevish statement of " I'm so sorry that he has autism..." is " Why did you give it to him?! .. He's a great kid and does not need pity; just understanding."

    My favorite is when you have that moment, when they are so tuned in to you your speechless!

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  40. I am also a parent of four children. Three of which have muscular dystrophy and heart problems. My youngest also a a pacemaker and is on oxygen. I wouldn't trade any of them. They gave shone me so much

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  41. I am a mom of four children. Well they are young adults 18-22. My three youngest have muscular dystrophy and heart conditions. My youngest has a pacemaker and is on oxygen. I wouldn't trade them for anything in the world. They have taught me that we all need to appreciate what we have. Also they showed great determination. Wheelchairs and service dog and all. We went out everywhere <3

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Thanks for sharing!



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