Thursday, December 2, 2010

Got a question? I have an answer! Er, maybe

I've been getting e-mails from moms asking for advice about their kids: questions about alternative treatments like stem cell therapy, questions about working with therapists, questions about my experiences bringing up Max. Nobody has yet inquired about my secret to looking so ravishing and glamorous at all times but I guess people are just shy that way. any questions about me or Max I could answer for you?



  1. My daughter is almost two and has CP. Thinking back on Max's first couple of years, is there any advice you wish someone would have shared with you?

  2. Hi, Jill. I have so much to say on this; I once wrote a post to moms of younger kids with cp, here it is:

    The main thing I wish I would have known is to try and enjoy Max as much as I could. I was so filled with anxiety and caught up in trying to find answers that I sometimes didn't enjoy his early childhood as much as I could have. I also wish someone had told me that even if some of my fears came true—like that Max wouldn't quite talk—everything would still be OK and not tragic. And, I wish we would have gotten him a speech device a little sooner. He finally got something at around 4. With all the great new tech options out there, it's so easy to start kids early on stuff, even a free, simple app for the iphone like Tap To Talk,

  3. I'd love a "stem cell update!" I'd love to hear the very latest on that, what the docs are saying about the treatment if you've had a consultation about it since you took that trip, and how you feel about it. Was it worth it? Did you see measurable gains post-stem cell? Did the treatment seem to kick start Max's progress?

    Unrelated bonus question: Is Max using the iPad more than the Dynavox? Is it well integrated into the family routine? I'm talking about for communication, not watching car wash videos!

  4. Did you have a lot of pressure from therapists to do things with Max he didn't like? My son isn't walking yet and his PT wants him standing all the time and walking and he HATES walking with a passion and isn't too crazy about standing all the time. I feel like the therapists have no idea what I'm going through, this is hard enough without pressure from them to spend my days being miserable.

  5. OK, Felicia, for you, I answer bonus questions, too!

    Stem cell update: Because our infusion was not part of an actual study, there has been no formal follow-up with Duke University. I have traded informal emails with Dr. Kurtzberg, the lead on their stem cell infusions, but that's about it. Max continues to make slow but study progress; I'd say the biggest area of progress has been in his level of cognition. Who knows if it's the stem cells or not. We definitely did not see any sort of major surge right after the stem cells, we'd been told it might take 4-6 months, and even then, nothing HOLY COW. Again, slow but study. I don't care about the whys, just as long as it happens. Worth it? ABSOLUTELY. Because we've always said that if it couldn't hurt and might help, we'd do it, and since we'd banked his cord blood at birth, we did. The Medical College of Georgia is doing a cord blood study right now, here's the link, contact info is at the bottom of that page:

    Bonus answer: The Dynavox is history; Max is all iPad, all the time. WELL, let me qualify: At school, he is, where he uses it for what he's supposed to: communication. At home, he continues to use it for entertainment purposes a lot, and a LOT less for speech. I think that's also because he seems very, very determined lately to try and talk. Half the time what he says is impossible to translate, and sometimes I just know what he's talking about (ur-ul, his best friend Caleb, trucks, etc.). So we're not getting maximum mileage from it at home, yet.

  6. Elizabeth: This is something a LOT of us struggle with. For me, it was more so during Max's early years. The thing is, our PTs never "pressured" us to do stuff--it was more encouragement. And when they were giving us too much to do and/or too much that just wasn't going to work with the reality of Max or the reality of ME or Dave, I would actually tell them that. Yes, we need to coax our kids to doing stuff they may not like and that's not comfortable for them, but therapy just isn't going to be effective if it's not realistic for anyone's life, right? I think you should have a heart to heart with the therapist and tell her that. Because you're both looking out for the best interest of your son, and so together, you should come up with workable solutions.... Does she have any ideas for what might make standing or walking more palatable for your son? Is he using any sort of devices? Max didn't love the Kaye Posterior Walker that much unless he was outside, but wow, did he love his Snug Seat PONY gait trainer,

  7. Joshua's PT is a know it all type who everyone tells me we should switch from but his dad takes him to PT and doesn't want to switch, he thinks she's fine. Like today he came home in a pressure suit, something else for me to deal with that I have not seen any good out of (he's tried them before and they didn't help). I did send her an e-mail after the IFSP meeting 2 weeks ago and got no response from her. She wants us to do what she wants us to do, period. As far as I know she has no suggestions on the walking, he tolerates his stander. He doesn't mind walking as much outside but the walker we have he won't use, he slips out of it. She wants to get him another but don't think they will approve it.

  8. How DO you stay so ravishing and glamorous at all times?

  9. Elizabeth - I have a son with hemiparesis who is now 12, so I've been at this a looong time.

    My philosophy has always been I'll try anything to help my son. But. If I deem something to be ineffective (there are trends in therapy just as surely as there are trends in fashion), I simply don't do it. And I will tell the therapist/physiatrist/whoever that it does not work. We've been through e-stim, casting, etc. Some of it has been hell. As you go along, you will get an idea of what is absolutely possible for your child and what is not. I know for sure that my son will not have significant use for his right hand because his associated reaction is so strong he can't use the right hand independently of the left. So we've shifted the focus to learning to navigate the world.

    My son didn't walk until he was 3 1/2, and I spent many an afternoon with his back against the wall while he SCREAMED because he was probably scared witless. But then one day he simply walked.

    The bottom line is: You have to do this stuff, so you can modify the protocol as you see fit, skip it entirely or find something on you own that works and present it to the PT.

    You know your child. You listen to what the professionals have to say, then you determine if that will work in your situation.

    If you want to talk more about it, feel free to e-mail me at grrlathr at gmail dot com.

    Ellen, sorry for writing a post here!

  10. Finn, that was a super-helpful answer. Perhaps you can address the a on how I manage to look so glamourous and ravishing at all times?

    Elizabeth, if I were you, I might be looking into other options for a PT, unless she's really the only game in town in which case you should schedule a one-on-one meeting with her, if possible....

  11. How directed vs child-led do you think therapy should be? That probably depends on age - my dd is 19 months.

    Example: Last therapy session, the (developmental) therapist had it on her agenda to work on stacking with blocks. DD was not really interested in doing that and was trying to play a mimicking game where she was copying the sounds the therapist was making (something she does in speech therapy). The therapist let her do this for a minute, but then insisted that she work on blocks, so DD screamed and cried and threw a tantrum. She did eventually work on the blocks though, but she also had a really hard time with it because they were lego-style blocks, and she can barely stack regular square blocks.

    DD cries when the developmental therapist comes, and the therapist says "it's because she knows I make her work." In some ways, I understand that making her do these things even when she doesn't want to may be helpful for learning the skills. I feel a little uneasy about it, but then I wonder if she's right and that's what's necessary. But it just seems to me like it doesn't have to be a negative experience. I would have followed her lead and used the mimicking game for other therapy purposes.

  12. My son had an AC eval yesterday and there was a person from Dynavox there which I think is a bit of a conflict of interests. Anyway, I brought up the ipad and the concern was that it wouldn't be durable enough. My son has his hands in his mouth sometimes. So, what does your ipad have to endure? Would you say it's durable enough? Thanks Heather

  13. Hi Ellen,
    Being the youngest of four girls, I was surrounded by my sisters growing up. Acutely aware of their support of me from a young age, and my saving graces transitioning into adulthood. So even though this blog is Max-centered, I'm always eager to hear about Sabrina.

    How is she doing these days, taking kindergarten by storm?

  14. Hi Ellen!

    My son is now 21 months and he has consistently gained motor skills in a somewhat typical order but just late. My problem (and I know I should just focus on the present but I think we all look to the future at times)is that with respect to cognitive issues, I just don't really get where we are going. Our neurologist has always been super positive and our son has done well given his extensive damage and then out of the blue the neurologist last month just says "yes he's doing great but he's probably not going to be able to read or write" and yes, I understand to take callous doctor comments with a grain of salt. But it seems like there might be an age where you have to say...yes, he's going to have cognitive issues even though we might not know what exactly those will be. So, do you think there is an age range where a parent might realize that her child is not going to catch up in this area? Sorry, this is probably unanswerable but...

  15. Elizabeth, does your husband help with a lot of your son's therapies at home? If not, he may not realize that the PT is being super pushy; he may just assume she's "the professional and knows best." At least, that's how it was with my husband in the early years until he started doing some of the more hands-on stuff with Nik. Then, he totally got it. Just a thought...

    Heather, my son is a licker/mouther and a thrower of breakable things. We got an after-market case for his iPad which has much more padding. Also, we only use it during structured times such as when I can sit with him or at least be on hand to make sure it doesn't get thrown. So far, so good! And he's learning that it's a highly desirable thing to have access to so he treats it with a bit more respect. I think the fact that some of the programs allow him to do things he can't otherwise do (he has CP and autism), is very empowering for him so he's motivated to "play nice."

    Alicia, maybe ask the therapist what her objective is in pushing your daughter through the activity? Is there a way you can help her incorporate the preferred activity (mimicry) with the not-so-much? We used to have to do a lot of that with Nik (now 7); well, we still do but with different things now. LOL

    Ellen, how DO you stay so ravishing and glamorous? Don't hold out on us! ;-)

  16. I get like 12 turnips in my CSA box every week. Not that Kate would touch them, but any ideas besides mashed or roasted? :)

  17. Good advice from Beth!!!

    Alicia, I could write a book on the delicate question of therapists pushing our kids. Seriously. I know therapists mean well (and therapists who read this blog, please speak up). Here's how I see it: A therapist should be able to make most therapy, especially for a 19-month-old, engaging and play-like and NOT work-like. In fact, I have never, ever allowed therapists to call therapy "work" in Max's presence. I just didn't want him to grow up with any sort of aversion to it. One speech therapist used to say to him "OK, Max, it's time to work" and I asked that she not make that distinction. So I would have a conversation with the therapist and see if there are any new approaches that might work.... Ultimately, there can't be therapy if a child refuses to cooperate/cries the whole time.

  18. Heather, re, how durable the iPad is: Pretty darn durable! Max has dropped his a bunch of times so far. Ours is encased in the iPad holder sold by Apple, which has a stand to prop it up, though it is not padded. Beth, post the link for where you got the padded one? As usual, I'm getting as much as I'm giving from this post. :) Oh, and YES, TOTAL conflict of interest to have Dynavox at the AC Eval. If the best they can say is that the iPad isn't as durable, that's weak! Another device to check out, which is now owned by Dynavox: A Tango. The one added advantage this device has, IMO, is that it features real kids' voices. Max tried it a few years ago, but wasn't ready for it yet, here it is:

  19. Hilary: So nice of you to ask about Sabrina! She'd be pleased to hear it, as the world continues to center around her. She loves kindergarten, actually LIKES doing homework (hope that lasts!), continues to want to wear short sleeves and sweatpants every day (which she sometimes pulls from the laundry), is very interested in all things arts and crafts, keeps asking about traveling to Chicago because her best friend in kindergarten was just there for Thanksgiving, continues to have adorable freckles and those chubby-baby hands, she's going to be 6 in January! She's actually been relatively nice and caring to Max lately, helping him hold things or pick stuff up, though she is fiercely competitive about toys and does not like it at all when he sits on her new bed. Max, in turn, does it to torment her.

    I haven't done one of those Sablogs in a long time in which I interview her, will try to do one soon.

  20. Lesley, I literally burst out laughing when I read your q, as you may or may not know that I really don't cook. Whenever I like to fake it, I get recipes from or Anyone got any good turnip recipes? We used to get all sorts of vegetables in our organic produce box (Purple Dragon) that we didn't know what to do with. Sometimes, we'd use them to decorate the kitchen counter. Seriously. I finally cancelled that because so much stuff was rotting in the fridge.

    Note, turnips are not my secret to looking ravishing and gorgeous. Stay tuned.

  21. Also, I wanted to thank you guys for sharing your experiences as parents. It gives me an added perspective, and I sympathize with your kiddos because I was once in their shoes.

    Alica, like your little one, I loved OT, and though I didn't need it, I loved setting in on a session of Speech Therapy when the therapist came into our classroom to do a lesson once.

    PT...I tolerated because I had to, but like many have mentioned it really does depend on the approach of the therapist. Growing up I had two I adored, because they were cheerful and positive.

    And two I loathed. One had a very brash manner, and she seemed very condescending. I was a freshmen in HS at the time and mentioned to my doctor I hated being pulled out of class. My doctor told my mom, "she's going to make a living and build a life for herself using her mind, not whether she can do X number of push-ups." I was put on consult after that, meaning they checked in to see if I had any problems or needed anything.

    Now I realize I come at this from a rather privileged place, having obtained a bachelors degree, but I tend to agree with my doctor.

    And know that I received PT when I was in college to help with learning skills to become more independent.

    So I think there's definitely a place for PT, it's meant to push you to reach your goals, but it should be done thoughtfully and encouragingly ESPECIALLY when working with toddlers and children.

    The other one I loathed, her breath smelled like coffee and cigarettes. ugh.

  22. Ellen, the iPad cover we bought was from a large electronics store (I hate to name names) and is made by "incase." It's basically a souped up verson of the Apple case but with thicker casing/padding. I've read about some other cases that are more hard-shell type. I basically just went to said-store and told them I wanted their most durable case bc I have a 7yr old who likes to throw things. So problems.

    Chiming in again on the AAC issue, depending on how your child learns and what level of cognitive or visual impairment they may have, you could also look into a device from Prentke Romich ( Nik has a Vantage Lite; it's designed to be used through motor planning and sequencing versus a need for visual scanning (though it does have icons and such). Nik's a very tactile, muscle-memory, and auditory reinforcement kind of learner so it works wel with him. The thing I love about PRC is that the company is emplyee-owned and all the "sales reps" are licensed SLP's or special educators. Ours actually came to our home to try devices with Nik to see if he was even a candidate for one. She then gave us a loaner to try for a while to see how he took to it.

    We adore Nik's PRC device but, honestly, can't wait until (or if?) he is able to understand how to categorize things or visually scan icons a bit better so we canuse the iPad for AAC, too, when we're on the go.

  23. My question is about potty training a kid with special needs. Do you have any tips? My daughter had a stroke like Max, though only one hemisphere was affected. She's almost four and really resistant to using the toilet and I don't know what to do. If she was a 'typical' kid, I might feel more comfortable being more aggressive about training. But I just don't. I want to give her more time. I am feeling a lot of pressure to do SOMETHING, mostly from my husband. Maybe this is a marriage question too ;)

  24. Hi Ellen, I have a question I've been meaning to ask you. Monkey Boy will be a big brother in a few weeks (!!!), and I've been thinking quite a bit about how to balance raising a child with special needs while also raising one with (I hope) "typical" development. How do I balance it all to make sure they both get what they need? I'm especially concerned about how I can keep Monkey's self - esteem up when/if his baby sibling starts effortlessly doing things that are difficult for him. Thanks in advance!

  25. what grade is max in what are his plans for his b day

  26. Amy, we've had potty training stops and starts for about three or so years now. Right now, it's off. Max liked it when I found a seat with purple handles, but he's over it.

    He is on and off at school. They're very regimented, and that's part of the issue: we're NOT.

    One of the things that worked for a while was gathering a lot of little prizes in a big bowl--Matchbox cars, bath toys, anything purple--and giving a reward for potty-training.

    We brought the issue up with the pediatric neuro who basically said, when he wants to, he will.

    Google around online and you can find some protocols for potty-training kids with special needs.

  27. Jo, I hope you're feeling well! I've never found the balancing thing to be a real issue. Like everything child-related, you grow into it. Max may need more of my attention at, say, dinner time, but I make sure I have special Sabrina time. We read to the kids separately (or if I'm alone, I'll read first to Max, then Sabrina, she tends to go to sleep after he does).

    The self-esteem thing hasn't been an issue, either. Max is aware he does things differently than Sabrina, but I don't think he minds. Sabrina, for instance, has a Razor that she loves to zoom up and down our street on. Max couldn't ride it and you know what? He's never once asked because he is perfectly content with his green tractor. Having a "typical" sister is the reality he knows. He's used to it.

    Having two kids was a very, very healthy thing for me; it made me less anxious about Max. When he was the sole focus of my existence, it was too easy to obsess.

    You will figure it out. I will be on the lookout for your big news!!!

  28. Hey, AZ! Max doesn't really have grades at his school. Can you guess what the theme of his party is going to be? DING DING DING!!! It's purple, once again! And the clown from last year is coming back, by popular demand! It's this Sunday. Max is most excited because his bff, Caleb, will be there. He's been talking about it for weeks now. I can't wait to see how out of his head with bliss he's going to be. Wait till you all see the birthday cake!

  29. And now, the answer you've all been waiting for. I decided to have my good friend Paola, who I've known since we studied together in Italy during our junior year of college, answer the question.

    The way I stay so gorgeous and ravishing, she says, is the stress. It agrees with me.

  30. I really liked your answer to Jo on sibling issues, Ellen. I think children take cues from their parents and you and Dave have shown your children that they are both loved as individuals. Barbara

  31. Love this post too! I have so many questions and I'm so glad to see that I'm not alone in some of my issues. Malayna is 6 and still not potty trained either and it's been an on and off process for 4 years! Like you, school is more regimented (but she cooperates better for them) and home is nothing. I'm with you on believing when she's ready, she will.

    Now my question: how do balance therapies and school? We have gotten therapies outside school since Malayna started preschool but it didn't matter then because she had no school on Fridays. Now she's in kindergarten and could be in school 5 days a week, full days, but I still take her for independent PT and OT because I feel that she doesn't get enough at school. I don't think they could fit more in at school but their goals are more educationally focused goals (appropriately) and I have life living goals - like improving her gait. But she's doing really well in school right now and is making good progress so I'm wondering if keeping her out one day a week is a good thing or not. Unfortunately, we live in a very rural area and have to travel at least in hour each way to find therapies so it takes the full day by the time we do it all. Our physiatrist says the socialization and being with other kids is very important too and suggested sports programs for special needs kids but we don't have anything like that in our area. What do you suggest?

  32. Wow, Sheila, that's a toughie. Some thoughts:

    Can you discuss your concerns about needing stronger OT/PT goals at school? Do you have an IEP coming up? Of course, schools are education focused but the OT and PT they do (and assuming you think the OTs and PTs there are good) should be focused on improving her fine-motor and gross motor skills.

    Another thought: OT and PT are typically 45 minutes, an hour at the most. The more important thing is the stuff you do with Malayna (what a beautiful name) during the course of the day, right? So maybe it's better to keep her in school.

    Would either of the therapists ever come visit on a weekend? I know you're very rural, but you never know until you ask.

  33. Kevin (Zac, Nic and Kenadie's Dad)December 6, 2010 at 4:49 PM

    I know I'm a bit late with my question, but ... My son Zac is 2 years old with CP. He can use his right hand fairly well, including his pointer finger and we would like to get an iPad for him, for both communication and learning. Do you have any recommendations for a communication app on the iPad for a 2 year old with CP (or any other good apps for that matter)? The Proloque2go app seems too advanced for a 2 year old.

  34. Hey, Kevin. I've heard the Tap To Talk is good. BUT, before you consider the Proloquo2Go too "advanced," you should know that it can be completely simplified! I think you should talk over with his speech therapists.

    Also, check out this great blog, Babies With iPads:


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