Special Needs

:(

Every time someone new evaluates DS, I have this subconscious hope that they will say, "Oh, no. He is going to walk at 20 months and then lead a totally normal life. I see this all the time." Why do I do this? I guess it's because, up to now, I have never gotten bad news from a doctor. My family had always been blessed with good health. 

So I just have this stupid expectation, and I can't even appreciate the good things they say because I am so upset that they don't tell me everything is going to be fine.  

I am also overwhelmed because they give me 20 different moves I am supposed to do with DS and I am completely not strong or coordinated or graceful, and my memory sucks, so I feel like a total failure to my child. I am an English teacher and I don't understand how I am supposed to remember and execute all these exercises I learn in an hour. I can't even do step aerobics or line dancing.

 I am just wondering if you guys feel this way, too. Sorry to be so negative today. :( 

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  • There is always too much to remember and there is always too much to work on!!! Please do yourself a favor and ask your therapist if maybe he/she could bring a written/typed list of the at home carryover.

    When our SLP came to our house, I always felt so stupid that she did things so seamlessly and I had the hardest time coming up with imaginitive ways to work with my own son. Most of the time, I just did exactly what she did because I just could NOT think on the spot with her here. Once we discussed this, she helped me, but she didn't take a proactive approach to that before I asked. In her experience, a lot of parents don't do any carryover... so she didn't expect it.

    I hope things get better for you!! 

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  • you are reading my mind.  I'm right there with you.  Why can't it just be enough to love your baby.  I hate the fact that I have to be "taught" to be a "good" mom.  I too forget the list of exercises the therapists throw at me.  I do what I can...for better or worse.  I, like you, just want an appointment to end with, "great job, everything looks good, see you later," in stead of, "OK try these things, and call this specialist, and look out for this, and we'll see you next week to give you another list."

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  • Ditto to everything you said. My husband said last time when we were coming home from a feeding eval that he would rather just live in our own little bubble with Carter so we wouldn't have to hear how behind he is or what we need to do to make him better. We see continuous improvement, and of course he is behind, but can't we just celebrate his ongoing accomplishments? I just want to scream, "but he has come so far!" at all the docs and therapists. I know that they only have Carter's best interests in mind, but it gets hard to hear. It is also overwhelming to try to remember all the things we should be doing with him. We just want to love him and not have our days with him seem like all day in-home therapy sessions.

    By the way, I am a first grade teacher and having a SN child has put everything into a different perspective for me. At IEP's and networkings I have more compassion for the parents because I realize how hard it is to hear what is wrong with your child. Although I was never rude or heartless, I am just more sensitive now. 

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  • I don't have much time to respond but the last time the PT was in for DS2, I videotaped all the exercises she did and with her explaining the steps so that I at least had it documented.  I did it on my littel camera in 30sec clips.  Could you do something like that?
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  • You ARE being good parents if you take time to just live...... take care of yourselves too. Therapy doesn't have to rule every day. Don't let it make you feel guilty. I take 'breaks' where I just mentally check out from analyzing everything. I've told this to DS's therapists and they usually come back with a positive response that I need to do that every now and then. 

    I kinda let the therapist take over for a couple weeks or whatever I need mentally and then I check back in and advocate... I do work on things at home, so I am very honest with them when I'm taking my break and letting them take lead.

    Does anyone else do this? I totally left the guilt about this behind a long time ago.

    I have to throw in a disclaimer that DS has autism, not something that is a health risk or something that you just don't have the ability to check out from. I can't speak for that situation. I'm not sure I know much of your history... so I hope what I said applies and isn't irrelevant. 

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  • I hear you! My DD just turned 2 and doesnt walk yet. Shes been in PT for a year. I've cried over attempting the stupid exercises and I hsve no idea what i'm doing. Plus, I think the therapists assume I'm doing her exercises 24/7. I have another toddler to take care of. And I do let me DD have some fun time to herself. I somtimes wonder if she'd be much further ahead if I had nothing else to do but her exercises all day.
  • Ask your therapist to write everything down or take notes during the session.  At the end of every session, our therapist highlights the top 2-3 moves to work on that week.  MH and I both work full time and we just can't spend that much time doing 'exercises' but we try to incorporate everything into our play time with her and honestly just playing with her has helped a lot.  Try not to put too much pressure on yourself!! 

    I'm with you on the doctors too - we finally got one doctor (dev ped) to tell us that she had seen kids like Izzy who grew up to be in a mainstream class with some special ed assistance and that was the first glimpse of the future we ever got.  Other than that, no one ever wants to commit to anything except that one day she will walk and talk.  Now her PT is willing to say she should walk by age 2.  We just try to take it one day at a time - it's tough.  Sorry you are having a bad day!

  • You know last night I walked by and glanced at my sons first re-evaluation from OT, since it has been a year since he started at his current place, and I thought, wow, I never thought my life would be consumed with evaluations, therapies and such and dreamed of a life without all of that. I had a why me moment. His evaluations were fantastic, 2 out of 3 areas he has improved by at least 24 months, the other just 12 months. Yet, his age equivalencies were still between 3-3 1/2 yrs old in OT. Kind of depressing when he is 4 1/2 an his sister is approaching 3 in just 6 short months. If you look at just ds and his numbers, his improvements are fantastic, but in comparison to other kids, sighhh, well we still have a long way to go.  
  • Yes -- I do feel this way.  I wish there was something I could say to you that would make you feel better - but there isn't I am sure.

    You are not alone.  Keep positive - and dont put pressure on yourself.  You are a good mom :)

  • I remember when I was taking the parent floortime workshop (8 weeks) and it was very exhausting....a lot of info, homework, videotaping myself with my child and how we work...etc. Every time we got out of there (2 hr sessions), we were all spent. My mind literally hurt.

    Finally I asked the teacher one day how much we're actually suppossed to do this with our kids realistically and her answer was, (cheerfully): "Floortime is kind of a way of life, ya know,...so there's your answer!" .....all of us kind of looked at each other like "you have got to be effing kidding me".

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