Wednesday, August 19, 2009

What's next on my wish list for Max

So, the thing about having a kid with special needs is, you're never satisfied. Of course, when they first do something you've been waiting and praying and waiting for them to do, you're ecstatic. You do a happy dance (me, I'm a screecher), praise them like crazy, call your friends and family, blog about it, alert the press.

But soon afterward, you're wanting that next success to happen. You're impatient for it. That last achievement is left in the dust as your hopes are roaring off to the Next Big Thing.

I so want Max to be potty-trained. I am also dying for him to learn how to drink through a straw (here he is, pretending with my favorite way to waste money). Using a straw will be a huge step toward better tongue and breath control (critical for speech), but it'll also be a giant step toward independence. I'm not quite ready for him to start drinking coffee yet, though. One hypercaffeinated person in this house is enough.

What's next on your wish list for your child?


  1. Hi Ellen,
    Commenting here regarding the "faq yourself" post. Used to comment often (before returning to work haha) and have been more of a lurker for a bit but have to tell you I still tune into your blog almost everyday and love it. Your an excellent writer and it's great hearing about Max and Sabrina.
    Thanks for being a wealth of wisdom in blogland and I am sure in real land too haha.

  2. um did I really just say Faq yourself post.. I meant the Faq with myself post.. it's been a loooong day haha my apologies.

  3. You're so right about us never being satisfied. I think that's a good thing, though. It means we're never going to give up on our children. There is no ceiling over their capabilities, so we should keep pushing them to succeed!
    Anyway, my next big thing is for Daniel to be able to pretty consistently catch a baseball with his left (involved) hand. He can do it, but not consistently. He also has a rather interesting form. Don't get me wrong - I'm thrilled that he can use his hand at all. But he's so looking forward to playing t - ball (in, oh, nine months), and he told his OT when he was three that all he wanted to do was be able to catch a baseball.
    Oh, I'd also like him to learn to tie his shoes! That's a work in progress for us.
    Finally, I'd like him to stop peeing on the toilet seat. Then again, his dad hasn't exactly accomplished that yet...

  4. So true, Ellen. Recently, Faith began walking on her knees, after oh about 3 yrs of bunny hopping. I thought it was never going to go beyond that, then she did it. Now I am like, oh, kid, let's start pulling up and walking!

  5. I too want my son to be potty-trained. It hasn't even been a year since we started and we realize that it may take a while, but we really want it to happen. It would be so nice not to have to take him to the potty every hour on the hour. We feel like if we don't he won't stay in that potty state of mind. But we do what we have to do.
    and of course we want him to say something, anything! but he has made some progress over the summer and his non-verbal communication in general has gotten much better. and his direction following has grown as well. so we are happy for those little tiny things. and as I always say, the little things keep us going!

  6. drinking from a straw...tht was such a difficult thing for Kennedy, but starting with tiny straws like juice box size worked better...I think it is easier to get some out of smaller or skinnier straws than it is the big fast food type or even the leak proof cup type. This is how we got Kennedy started and then she could eventually take small sips from the larger ones.

    of course now we are always wishing for more now we wish she could drink at all. I hate how her stroke/seizures took so much from her. She has been rolling on her belly and occassionally acts like she is trying to get on her knees...I wish one day soon we would see her on her hands and knees crawling again!

  7. Look at the New Visions catalog, there is a cup with a straw with a one way valve and/or a honey bear cup that works well for some of my students. I love reading your blog and your kids are beautiful!

  8. Just playing catch up on the last several posts. Love the pics of the face painting!

    Have a ball at Hershey -- and yes Ellen, Reeses do exist in the PARK -- so have a ball and don't think about it until later. Please, we all deserve chocolate therapy at least once a day!!!!

    Good luck at Duke. My girlfriend took her son w/ CP down for the transfusion and it was much less stressful than they imagined. Dr. Kurtzberg and team are all wonderful and helpful. Should be a terrific experience.

    I also look forward to the things Amelia will accomplish. It's such a slow road and I don't really care "when" she gets there...I just want her to get there -- know what I mean?

  9. Showering independently. We got him IN the shower (huge), but he still needs an adult to assist.

    I will send good straw drinking and potty-ing ju-ju your way.

  10. I am hoping that Evan will be able to not get super behind in Kindergarten and will be able to get some writing skills. With the visual perception issues caused by the stroke he is well behind his peers in that sort of thing. It would also be nice for him to be more independent and self directed (yet another stroke thing), but I am taking it one step at a time.

  11. I guess I'm in the middle of a current "new thing" so I haven't even thought of the next. The current "new thing" - crawling on all fours. He doesn't do it consistently but probably just under 1/2 of the time.

    So...the nect big thing for Ben? I would love for him to learn to cruise around furniture. He can pull to stand and can cruise somewhat with help. It's probably a very LONG ways away for us...but maybe by next summer? Here's hoping...

  12. I would love it if my littlest angel could reliably pinch things with what we call his "Walk Like An Egyptian" hand. However, if he can't ever do it, therapy notwithstanding, that's fine with me, I just think it would be great for him to have more use of the hand. I wish my oldest would learn to modulate his voice level--that's a continuing education process; he equates alarm, enthusiasm or excitement with inappropriate levels of volume and it scares the crap out of people who don't know him (to say nothing of the embarassing "blurt outs" in public --e.g. "That lady has a bigger behind than yours, Mama"--at full crank).

    Hang in there with the potty training. I dealt with that crap (yes, ma'm, I meant that!) for years myself. Every kid is different and sometimes it's just the muscles refusing to cooperate and other times it's just un-ready-ness for other reasons. When my kids got the spirit I wasn't cheap with the, rewards. That did the trick.

  13. Hi Ellen,
    I've been a lurker for a while ;) I love, love, love your blog!

    My son also has CP and has bilateral profound deafness. He now has a cochlear implant.

    I was so thrilled when I saw this post and the picture of Max with a straw!

    My wish for AJ is to speak, be potty trained by age 4, to be able to chew all foods/textures, and to drink from a straw. :)

  14. Hi Ellen,
    The straw has been on our wishlist for a while - and we've just achieved success there! I blogged about it a little while ago. What worked for us was a cup with a small, thin, very strong straw that he couldn't bite down hard on AND the speech therapist giving him a little support by touching just under his chin to bring his jaw up. He's LOVING drinking through a straw now - something I never thought I'd see ;-).

    As for me, independent walking are number one - but then that's been on the list since he was a year old...

    And you're right about being impatient for the next big thing. BC is toilet trained but now I really want him to be able to go on his own - looking into equipment that will make the toilet accessible for him (and then there'll be the HUGE challenge of him being able to get undressed/dressed for the toilet). I am not expecting this one to happen soon, but it's a good goal as it's actually quite tricky (and hard work on your back) to have a toilet trained child who always needs you to take them.

  15. I would like for Addison to walk in the walker unassisted, move forward with oral feeds, and make more consonant sounds.
    As for Noah...I think he should work on quitting his thumb and wiping his own butt, but he assures me he'll do both on his 5th birthday!
    Got the book today--thank you!

  16. Isn't it true??? Tonight Jake walked down 4 steps holding the rail. After screaming and hooping and clapping the next thing was steps down now if we could just start working on potty training.
    Always thinking ahead I guess.

  17. Dude, I would love to have Charlie drink from a straw, but the minute I put one in his mouth he looks disgusted and turns away. He even does this if he's the one that puts the straw in his mouth--something about the texture turns him off.

  18. My wish is that first grade won't totally freak Foster out. He thinks school means Kindergarten. And Kindergarten was WAY more entertaining and WAY less work. His TSS has his work cut out for him.

    I also wish we could get his vision better corrected. Right now he's stuck at 20/50 with constant wear glasses. Imagine that. That might cause a sensory issue or two.

  19. It is so touching to read all of these wishes, hopes and dreams for our kids. And our husbands (Jo, your comment cracked me up)!

    Thanks for the good straw advice, I am going to talk more with the speech therapist about this. Max used to resist putting straws in his mouth, but now I make such a fuss when he does that he seems to be doing it for comic effect. Hey, I'll take that—it's a start.

  20. I would love for my Max to eat by mouth again, and to sit independently, and sleep through the night. All things he can almost do.

    We've used the honeybear straw with Max, and it worked better than most since you can help the motion along by squirting some drink up through the straw.

  21. I would love for my daughter to sit by herself, hold up her head on her own, say a word or two (or 50!), drink liquids and eat solid food. That would be a good start! I am thankful for every new thing that she learns and I will love her even if she never accomplishes these things. I really just want to see her move forward towards independence (even if it is inch by inch).

  22. Ellen...I am just praying to make it through these teen years with my sanity at the moment. Regan's emotional rollercoasters makes me wish spas were waaaaaay cheaper.

    The potty training thing was huge for us though it just took her a while to really want it for herself so age 7 was the magic number for us.

  23. I had to think hard about this as Elizabeth is really doing well. I think if you asked her (I don't have the heart to do it) she would say to jump. Elizabeth is amazed that other children can jump and frequently asks me why she can't jump. We have been working on jumping forever and even have a trampoline in our living room but as with everthing else it will come with time.
    I wish Max all the best with Stem Cell transplant. Of course I wish everything goes well for Mom's sake too. You must be so excited.

  24. Ellen, I just read this post! I am eager to know where Max is, with the potty training process? My son is 4 and is showing signs of wanting to train. =) I am holding back a bit because I believe there are so many things developmentally he has to catch up on first. Do you mind telling me how you are potty training..and how its going? I am eager to get mine trained as well. I also know he is still only developmentally wouldn't train a 2 yr old..why my guy with CP as well as seizures. JUST LOVE YOUR BLOGS! KEep um up!


Thanks for sharing!

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