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Pitty party for one, please.

StarryNight39StarryNight39
in Special Needs

Ugh. Drew is still not walking. It almost seems as if he has regressed. Instead of walking one foot in front of the other he now seems to be side stepping. We had him evaluated for EI and of course he doesn't qualify. (How an 18m old with a recent hip dysplasia dx and a non walker doesn't qualify is beyond me, but that's another story)

Anyways, my pedi said she really wants him walking by his 18m appt in three weeks. He hates his brace and like I said he now seems to be walking differently. I just called his ortho and they can't see him till next Thursday,

I just want my poor baby to walk. I'm so sick of hearing "What's wrong with him?" "Why doesn't he walk?" "Why does he wear that on his legs?"

Rant over, I'm sorry. I know things could be SO much worse.

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{Ava 5.16.06} {Ella 12.29.07} {Drew 2.9.10}
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Re: Pitty party for one, please.

  • ToastieSimonsToastieSimons member

    I think the worst part is the stupid questions.  It's like you start getting okay with it and working on it and having a goal, and then you get bombarded with the "why can't he walk?" or "maybe he could if you let him try" or "those things look weird on his legs" or  my personal favorite "it will happen soon and then you'll regret ever wishing he could walk".

    and it sends you right back to the beginning emotionally. I also have no idea how he doesn't qualify, was it not enough of a delay?

    Stay strong, and fyi you're little guy is so stinking cute.

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • kar5162kar5162 member

    I hate the stupid questions and the comments.  Um, no, when my nearly 22 month old starts walking, I will be thrilled, not annoyed he's getting into everything actually.  I'm surprised he didn't qualify for EI.  Was his delay overall not great enough?  If they assessed on motor skills in general, I'd ask them to look specifically at fine vs gross to see if he could qualify for gross motor specifically, at least based on clinical judgement.  DS was able to get OT monitoring for fine motor based on that even though he didn't technically meet the 1.5 sd delay.  I pushed for it with the therapists because his fine motor skills were behind and are also more difficult for him than typical kids. 

    It looks like MA has a clinical judgement eligibility too so you might be able to work that angle.

    Effective January 1, 2009 All children eligible based on the state?s definition of developmental delay (child exhibits a 30% delay in one or more areas of development or the child?s development is 1.5 standard deviations below the norm), clinical judgment (the child has questionable quality of developmental skills and functioning based on the informed clinical opinion of a multi-disciplined team) or the at-risk criteria (four or more risk factors being present), will have their eligibility for early intervention services re-determined every six months with parental consent.

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  • Nicksgirl05Nicksgirl05
    I often have to be reminded that just because things could be worse doesn't mean you don't have the need to vent. It doesn't mean that you aren't grateful for the things that you do have, it just means that you're human and it can be overwhelming when you're worried about your child. Especially when you have those kinds of comments to deal with. Hugs.
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  • StarryNight39StarryNight39

    Thank you so much, I appreciate it :)

    And to whoever asked about EI - he didn't qualify because he didn't have a significant enough delay. I figured a non walking 18m old would definitely qualify. He did qualify for speech and the ST was going to try and get a PT to come in and do an eval and give us some tips.

     

    image
    {Ava 5.16.06} {Ella 12.29.07} {Drew 2.9.10}
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  • MummyGruetzieMummyGruetzie member
    We are friends with a family that we met in the hospital who has a child who also has primordial dwarfism and had just undergone hip dysplasia surgery at that point. He's moved on from the casts to the brace and I think he has his brace off at this point, though it might still be on. He's adorable and their family is amazing. The Mom has all sorts of videos of her son moving around in his cast and brace that may be inspiring to you. In any case, if you'd like for me to put you in touch with each other, let me know! 
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  • wellfleet04wellfleet04 member

    I'm in MA too, and I'm not surprised at all that a non walking 18 month old didn't qualify.  My DD didn't walk until 18 months, and she also did not qualify for EI when I had her screened.  As she got older, low muscle tone, vestibular processing issues and some other concerns cropped up, but at 18 months, they didn't find anything significant enough to provide services.  

    MA EI is really budget strapped right now.  Would your insurance cover private PT?  DD got private PT and OT until she transitioned to an IEP with the school system at age 3.  GL!  I'm sure he'll get there, but I hear you on the frustration, and the annoying questions.  My least favorite was "Be happy she's not walking.  MY kid is into everything."  SO ANNOYING!  As if we all don't want our kids to reach those milestones, especially if it is an extra challenge or on the later side.  Grrrr... 

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