Wednesday, August 24, 2011

9 ways to always have hope for your child with special needs


It's hardest when your child is very young and you're still struggling to accept that he has special needs. So much about the future is unknown, although you've heard every single grim risk of his condition or disease. You wish doctors would just tell you what your child will be like, but they can't say for sure. You want to have hope, and you do, but sometimes worry and despair overpower it and you fear the worst.

As your child progresses you do, too. The worry feels less like a tsunami and more like an undercurrent. You quit looking at your child and wondering what's wrong and you start celebrating what's right. You accept. Sometimes, though, you accept too much and forget that there is still so much potential, and that you should never stop hoping.

Here's how to always have that hope, whatever your child's age:

• Toss the child development books. Unsubscribe to any of the "This is what your baby/child is doing now!" online updates you registered for before you knew your child was going to have special needs. They will only make you compare your child's progress to what is typical, and that will only make you despair. Your child is on his own timeline, and nobody else's. Put that on a Post-it and hang it on your bathroom mirror.

• Look at what your child is doing today. Of course you want him to walk, talk, ride a bike, eat by himself, sing, and do any number of other things. But relishing and appreciating the stuff your child is able to do in the here and now will give you more confidence in his future. Contentment breeds hope; worry breeds more worry.

• If the worry is ever-present, if it makes you cry a lot and keeps you up at night, get help. Find a support group, or see a therapist. Carve out time for taking care of you, because you need to be happy and hopeful—and your child needs to feel that happiness and hope of yours.

• Rethink your idea of "accomplishment." It doesn't need to mean the ultimate goal you have for a child—say, walking. An accomplishment can be your child learning to grasp the handlebars of a walker. And taking a first step in that walker. And taking a step holding your hand. Each and every thing can be A Big Deal, if you make it one. Screech "Wheeeeeeee!" Email friends and family! Alert the press! Your hopes will be buoyed and you will not be sitting around thinking, "Why isn't he walking yet?" Because in your mind, your child is well on his way there.

• You know that old fable about the rabbit and the hare, and how the slow-and-steady hare won the race? Now forget that old fable. THERE IS NO RACE. See above, "Your child is on his own timeline."

• Surround your child with positive doctors and therapists. Regularly ask them to share the great stuff he is doing, ditto for his teachers. Keep a list handy for insta-inspiration.

• When you see friends, family and neighbors you haven't seen in a while, about the progress they see in your child; you'll hear about stuff you probably hadn't even noticed.

• The next time you are freaked that your child isn't progressing, go look at photos of him from a year or two ago, think back to what he was doing at the time, and consider how far he has come. Also: Call up your wisest, most reassuring friend and have lunch or dinner, ideally with wine involved.

• Enjoy your child. The more you do, the quicker the grief will pass—and the more your hopes will be buoyed. Find activities you both like (and remember, not every single thing has to be therapeutic). Take lots of photos. Be silly. Cuddle. Kiss. Try so hard to quit peering into the future, and look at the beautiful child in front of your eyes.


25 comments:

  1. Thank you for writing this. Sometimes it's like you have a view into my head.

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  2. Excellent advice, practical and empowering.

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  3. Very good advice, to take your child on their own terms. It can take a while to get there but it is the best for them and for you.

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  4. Great post, sharing on Facebook :)

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  5. if your child isn't "measuring up", maybe you are measuring with the wrong tool!

    I keep telling my hubby this. He keeps telling me " a teenager should be..." and I keep telling him "...but our autistic teen..."

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  6. Agree, and progress.....every ounce of progress is still progress. Don't worry about where your child is going, just the fact that he's not stagnant. He's moving forward.

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  7. I stopped talking about milestones and instead started talking about inchstones. (I thought I was so clever when I came up with this and then I found out that lots of other people did too. ;) ) We celebrate all the little things and I try to see them as pieces of a larger puzzle that's slowly coming together.

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  8. Beautiful advice for ALL parents and children! Sharing the link to your post on FB!

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  9. Excellent advice...I really needed it today! :)

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  10. That's pretty much always been my approach. Life is too short to spend all your time beating yourself up, worrying, accusing, bargaining, comparing, or doing all that other "stuff" that doesn't make one whit of difference in the long run! All you can do is try to do the best you can, be positive as you can manage, and accept help from family and good friends when you plainly need it and it comes your way (that bit was hardest for me--I always wanted to do it all myself!).

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  11. I always try to think of how huge everything really is.

    Like with my brother, if I think something that is more negative like "I wish he could hold his head up independently", I try and counter it in my head with "But he can swallow now, and that takes so many muscles working in coordination, it's such a huge achievement, remember how happy everyone was when he started to swallow without choking. And you thought he'd never be able to do that, so maybe one day he will be able to support his head, or even sit up."

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  12. I've always wondered about the wisdom of giving those "What Your 18 m/o Should be Doing Now" handouts to the special needs parents at well-child check-ups. At our doctor's office, it is right on the form they give you with the height, weight, and percentiles... I am sure they didn't give this a thought.

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  13. Wow. This was excellent. I will be linking it on my blog today. Thank you!

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  14. It's so true that sometimes it seems like they stop progressing, but it's only that we see our kids every day! When I look pack at pictures or videos or things I have written, I can't believe how far Esme has come. I honestly can't even imagine what she will be doing next year.

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  15. Excellent list. I would add that if you have a support group and it's stressing you out, find another. Sometimes going through special needs blogs stresses me out and I have to stop for a month or so.

    And I wish everyone positive doctors for their kids. Sometimes, the positive ones aren't always the best,and vice versa.

    So if the top notch neurologist you need because of your kid's seizures isn't a positive person, but your therapists are, you have to learn who to listen to for what. And to trust yourself.

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    1. "So if the top notch neurologist you need because of your kid's seizures isn't a positive person, but your therapists are, you have to learn who to listen to for what. And to trust yourself."

      These are absolutely amazing words. I've been struggling a lot lately because of hearing different sometimes opposite things from my son's (5 y/o with cp) physical therapists and teachers. He has a PT in school as well as at a hospital. They were recommending an electric wheelchair for my son and I felt completely against that right now. I thought I was wrong for it and was feeling bad because I was like, how can I think I know better than these therapists who have been in their profession over 25 years. I opted to not even let him sit in an electric wheelchair for fear that we would lose a lot of what we've done until now. He's even been wheeling his own wheelchair with both hands and even going backwards with no help. In conclusion, thank you, thank you, thank you!!

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  16. I really love this. Wonderful advice.

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  17. Really great advice--especially for moms new to a diagnosis. That's such a rough time!

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  18. I agree with Eric :) My mom - bless her heart she loves me and does everything for me - but every time she looks at me I can see in her eyes and I even heard her saying to my dad once Nisha is so smart imagine how great she would been if she could walk that the problem with living in what could've been you're focuced on what you child could have been and missing out on what your child is.

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  19. I am a counselor - this is inspiring for the families I work with :)

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  20. I love your words . . I have an 11 year old daughter (with special needs) and have been telling people the same things you say here . . keep saying it, there are so many that need to read it and take it to heart . being a mom to a child with special needs isn't easy, it isn't always fun, but it is the most rewarding thing I have ever done. My daughter is kicking butt!
    Go all you MOMs (and Dads) out there! meet these kids where they are at, love 'em, and put opportunities in front of them- they will shine. (and remember the "no timeline")
    Amy
    www.30millionsteps.wordpress.com

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  21. I love your comment about the timeline. I've always said that I try not to focus on what others are doing but if my son yesterday could only move 1 finger and today he is moving 2 then I celebrate that. You are an amazing writer, blogger but above all mother and inspirer (if that's even a word...lol). Thank you for writing from your heart! Max is extremely blessed to have you as a mom!!

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Thanks for sharing!



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