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Old 07-24-2014, 06:00 AM   #1
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Reality check!

I just got the results of developmental testing on my daughter back. This was done by Boston children's and they sent me a very well done report detailing each category of skills with her score and equivalent age in months of where she is at. They used 2 different scales and followed up each section with a paragraph of explanation. Very thorough. But ouch! It's tough to see it spelled out like this. We knew she was behind. We said to each other "she is a little behind" but she is actually a lot behind in some areas . She is 2 and scored as low as 6 months in some areas. She has gross motor skills at 16 months and is very active so her deficits don't seem that obvious. But they are labeled as below avg, poor , or very poor in every category. Husband says we are doing all we can , she is in speech and about to start ot and cognitive therapy. So why be upset . To me it's going from the mindset of she just has a speech delay to she has a cognitive disability that she will always have. Big difference in thinking imo. She has a genetic disease with epilepsy so I was well aware of the potential for learning disability but it still just sucks to have it actually be realI want to be positive and ok with things but damn I'm not just sad , I'm downright angry! Angry at the situation, god, and all the powers that be. Trying to keep moving forward one foot at a time.....

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Old 07-24-2014, 06:07 AM   #2
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So sorry! There are great therapy options. Our neighbor girl is 9 and has global delays. She's doing awesome. Speech is the only obvious one. For me it helped to focus on what I can do to help ds. I'm pretty sure I had a mad/sad period but it didn't last too long. I still have smaller bits of it but I can get past it faster. Find therapists you really click with. Hang in there!
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Old 07-24-2014, 06:28 AM   #3
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Re: Reality check!

Sorry. The good news is you know early. She'll have a much better outcome since you are able to start therapy earlier. My dd didn't have cognitive delays but significant gross motor delays because of a food intolerance. Talk about anger- at 4 months old I started asking her doc about food allergies because something was wrong and they blew me off. we didn't get help until she was 1- still young but she was so far behind at that point. She had been in pain her entire 1st year and had issues with malabsorption. If we had been in the same state as her doc that blew me off over and over again when we finally got some help I might have went to jail. I was mad at myself too for letting her blow us off. we went through OT and PT for 2 years. My dd will always be physically behind because of it and still has the option for PT. Our doc thinks as long as we have her in something like gymnastics or dance that we can get away without additional PT so she left that up to us, unless she starts really falling behind again then it will be back to PT. She is never going to be at the same level as her peers. My daughter also has a very severe peanut allergy in addition to a few others that are not so serious.

Anyway, I have not dealt with your situation but I do understand that feeling your feeling now. Even though very little is actually changing- everything has changed. I understand the anger, sadness and guilt. Terrified (this one for me is related to the peanut). I think about the future and what it will all mean- worse case scenarios and the best scenarios. Its ok to be angry at everyone, even yourself. But be happy that you are able to intervene and give her the best possible outcome. You get through it because thats your baby and she needs you to get through it.
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Last edited by jbug_4; 07-24-2014 at 06:34 AM.
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Old 07-24-2014, 07:11 AM   #4
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Re: Reality check!

It is hard to hear your child is behind, I know. I felt the same way you do and asking the question why? It is hard emotionally but stay strong and things will get better.
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Old 07-24-2014, 04:14 PM   #5
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Re: Reality check!

yes it is hard emotionally but you are doing what you can by way of seeking resources for your daughter and going thru that process to accept what is reality.

Last edited by doodah; 07-24-2014 at 04:15 PM.
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Old 07-25-2014, 07:24 PM   #6
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Re: Reality check!

Thanks for everyone's replies. It does help to hear from other moms going through the same stuff.
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Old 08-01-2014, 06:58 AM   #7
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Re: Reality check!

She may have some impairments, but that doesn't mean that she can't be a happy, healthy, functional little girl and eventually adult. Now you know what you are dealing with and can work with it. She might not be able to breeze through things like someone else might be able to, but I'm sure she'll learn everything she needs with a little extra help and lots of love.


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Old 08-03-2014, 07:25 PM   #8
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Re: Reality check!

I think that it's totally normal to feel that way. I remember knowing my daughter had some issues but what I saw a diagnosis in black and white I was sad. Take the time you need to process those feelings. Then learn to embrace her strengths instead of focusing on deficits. That too is a process. It takes time but you will get there. I would suggest maybe finding a support group for special needs parents. Knowing that you are not alone on this journey is a huge help
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