Special Needs

More help, please?

I feel like I?m losing my mind. I just need some suggestions on getting through this waiting time and the early days of possible diagnosis.  My DS has been referred to early intervention for an evaluation. The waiting is killing me. I find myself googling so many times a day, looking for an answer. A definitive. Looking for something to say if this- yes, if not no.  Instead, I spend the weeks on a seesaw.  He babbles a new syllable and I think, okay he?s fine. Then he spends a day not saying much, not looking where I point, not playing with trucks, and I go, nope not fine.  I will forget for a minute and get busy at something, then I pause and my brain slows down and the thought crashes back into my head: something is wrong with your baby. 

 

I feel very alone in this encounter.  DH has a very laid back personality, don?t worry until you have a reason to worry, don?t stress yourself out looking for answers that professionals will give us soon enough.  I get that, but I'm an information seeker, I'm a "doer."  It's hard for me when there is nothing to be done. My parents just try to be positive.  "See, he?s doing this, he does that. Not all babies develop at the same time." My sister tries to fast forward to the future- "no matter what it will be okay. You don?t love him any different even if he has some challenges." Well of course not, I?m not a jackass. And my favorite- it could be worse.  I don?t want to talk to people. I don?t want them to tell me it?s going to be okay. I know ultimately it?s going to be okay, but I just want some time to feel sad about this situation and not have to be "okay" with this right away. 

 

It?s so hard to identify what is causing my pain.  I don?t feel like I?m crying for me, but perhaps I am. I?m crying for my little boy. I?m fearful he?ll never be able to tell me what he likes, or what he wants, or what hurts him.  I know I cry for future babies too.  I desperately want another baby, I?d like to have two, and I wonder if that?s reasonable considering the situation.


I will acknowledge I suffer a little from all or nothing, I can be a bit of a catastrophizer, seeing it as the worst.  It?s hard for me to get away from that.  And the appointment is so long away, and DS is so little that I?m sure this isn?t the ending but just the beginning of a giant waiting game.

 

I don?t mean to be disrespectful. I know this is the reality for you guys, I understand that some babies have more complications and that everyone here knows about fear.  I just wonder if anyone could offer some encouragement? How do I keep myself sane? How do I stop crying at work every time I turn around? Thank you so much.

Re: More help, please?

  • McRibMcRib
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    I was in a really bad place before my DS was diagnosed with PDD-NOS. I understand what you are feeling and where you are at right now. It's awful. I'm going to PM you my blog. I started it before DS was dx'ed and it helped me to get it all out. We're 3

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  • All of us have been down the path of grief before we come to acceptance. Your post made me almost cry.

    I know I took it the hardest when DS was evaluated for Early Intervention and then he was eligible. I don't think I had enough time to grie

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  • image McRib:

    I was in a really bad place before my DS was diagnosed with PDD-NOS. I understand what you are feeling and where you ar

  • Ugh, I so remember being in the place you're in. It's truly a horrible feeling. I don't know of anything that can help at this stage, honestly, except to try to keep busy with other things and distract yourself from the fear. I wasn't very good at doin

  • I have three boys, two of them have been diagnosed with autism already. That initial phase of having evaluations done is so difficult. You are being asked to look at your child in a way that is against all of our instincts as a mother.

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  • We are in the same phase right now and it is horrible. It is consuming my thoughts and all of my time. I can't wait to get through the EI process and have that portion over with. The waiting is making me literally sick to my stomach. Big hugs. 
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  • image nomadica:

    Ugh, I so remember being in the place you're in. It's truly a horrible feeling. I don't know of anything that can he

  • You just described me, my husband, my family, and my acquaintances 2 years ago (with some variations on what we were concerned about). I don't know if the worry about your child's future ever goes away.  But, I so desperately wanted a diagnosis.&

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  • We are newly diagnosed but it was a very long road. And at this point I can truly say that it is better to know than to not know. It's better to have at least some view of what you're dealing with and to have some direction that you should go. It feels be
  • image McRib:

    I was in a really bad place before my DS was diagnosed with PDD-NOS. I understand what you are feeling and where you ar

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