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I'm really having trouble today...

RdmaggieRdmaggie member
in Special Needs

Last night I felt confident but today I'm just falling apart. I saw something about retts last night while reading up and I'm beyond terrified. I'm a nurse....both for chronic long term care and in the hospice field and the information I saw was overwhelming. I feel like m falling apart and I have no where to turn. I called help me grow today and they were less than helpful, I felt completely stupid. They told me they helped with bills but did not arrange any services, etc and we would have to qualify financially' which my guess would be we would not.

i can barely take care of myself, I haven't eaten well in days. I made an appointment at my drs for this afternoon. My husband I currently on overtime and m alone with dd most of the day. How can I take care of her when I can barely function?

I love my dd so much.... I just want to help her and right now I feel like I've failed her. 

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Re: I'm really having trouble today...

  • grbnikgrbnik

    Has your DD been diagnosed with Retts?  If so, I have a friend whose daughter has been diagnosed as well, and I can try to get you some info.  I know this is hard (and, I am the worst person at it), but if she hasn't been diagnosed yet, try not to diagnose her yourself.  I have diagnosed my kids with a myriad of things, all of which they have been tested for and ruled out.  I have put myself through hell and back with playing Dr. Google, and it turned out that all it did was take away years of my life from the stress of worrying.

    Please know that my thoughts are with you and your DD.  If it is Retts, I think there may be a national support group out there.  My thoughts and prayers are with you and your family right now.  Hugs.

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  • RdmaggieRdmaggie member
    She has not been diagnosed with anything yet. I just saw that last night and it took my "worst case scenario" to a place I could not imagine. Because she fits a few of the requirements, teeth grinding, odd hand movements, random screaming, poor sleeper I am now on high alert. I'm terrified and I feel like I'm just sitting here stewing in my own thoughts and fears. 
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  • teacherjulieteacherjulie member

    Help me grow on their main webisite has a referral form fill it out the form.  https://www.odh.ohio.gov/sitecore/content/HelpMeGrow/default/Referrals/referral1.aspx

    this is the page you need to fill out.  A case manager/intake will call you in about 48 hours.  When we used them I told them my concerns a speech team came out evaluated and then we met again to set up services, of speech and then later OT.  When the services were not working with our schedule they paid for private speech, through an IFSP individual family service plan.  the person you talked to is unknowledgeable.  I also responded to your other post.

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  • Assembly_ReqdAssembly_Reqd member

    I agree that your First Steps person was either misunderstanding your question or mis-informed. I would call back and ask to speak to the Birth to Three program manager.

    Google is not your friend. Ever. When I start to feel myself getting sucked into anxiety, I try and remember this quote:

    ?Worry does not empty tomorrow of its sorrow; it empties today of its strength.?

    Auntie has a great saying that I also think of often. Raising a special needs child is kind of like and airline emergency. You have to put the oxygen mask on yourself before you can help others.

    Hugs. We know how tough some days can get and we are here for you.

    WAY 2 Cool 4 School


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  • ToastieSimonsToastieSimons member
    Help Me Grow does provide services.  We used them for over 2 years before moving.  You need to call them back and ask for an evaluation.  They will provide you with a service coordinator who will organize an evaluation.
    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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