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Old 09-26-2007, 02:13 PM   #11
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Re: Special needs mamas, ? for you...

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Heh. My DS has had a diagnosis since he was 10 days old (he has an actual brain malformation, so its a concrete thing, kwim? You can see it on MRI!). But, my family still loves to say that there's nothing wrong with him. They're just in denial. It pisses me off because its like it cheapens what he is able to do, ya know?
OH ME TOO! My DD has PVL which is brain damage that shows up on an MRI and still certain people in our lives would say "Oh she's fine!" or "That's normal" or "she'll outgrow that" and it drove me nuts. You expressed exactly how I feel with that.

I would go with you and your DHs feelings and try to believe in yourself as the best judge of your kid. I think it's really uncomfortable for people who aren't involved in special needs kids lives to admit and talk about it.

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Old 09-26-2007, 02:13 PM   #12
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Re: Special needs mamas, ? for you...

Trust your inner voice.

I dealt with this for years with my sons father and his family. They believed there was nothing wrong with my now 9 year old son. Even though he regressed after a year and continued to do so.

When he was diagnosed formally, no one would listen. Everyone said "Oh its just a phase, he will grow out of it..."

And he never did.

We're also dealing with this, with my now 13 year old son - because they are slowly moving towards a diagnosis of high functioning autism - and my ex is swearing up and down that I am just trying to get a doctor to say he has problems. But the boy HAS problems, he is not a normal child - well for the most part he is. But his delays come through and then you can tell...

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Old 09-26-2007, 06:40 PM   #13
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Re: Special needs mamas, ? for you...

Yep, and people still say it today, even with his diagnosis. Kearnan has PDD NOS, SID and speech delay but everyone insisted he was normal. He's just a late talker (um no he spoke till 18months and then quit talking and regressed). He's just being a boy, he's just shy ect ect. BUt I knew we needed to do something for him, so I pushed.

Talk to your pedi, trust your instincts. Ask for referals. A developmental pedi can probably help you. Or ask for an evaluation from an occupational therapist to see if she qualifies for services. They won't give you a diagnosis, but they will help her if she needs it, and that is more important anyway.

I wish I could tell you what to do about the nay sayers, but there are always a few. Just try to ignore them, and do what you think is best for your child.
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Old 09-26-2007, 06:45 PM   #14
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Re: Special needs mamas, ? for you...

My mom (god bless her...I love her dearly) always told us that there was nothing at all wrong with Zachary. Was vehement about it.

I stuck to my guns (after being told by our ped that they won't diagnose at 3...then getting shunned by a neuropsychologist becasue our insurance won't cover testing)...anyway, he's been tested and has ADHD and early onset mood disorders (basically bipolar) and possible asperbergers (even though that has not been fully explored as of yet...but he has the sensory issues of autism).

Anyway, I guess my point is keep trying to find someone to get help. Zachary is 5 now and just started kindy and we are working to get a plan in place for him, but I so wished we could have that all done before school started.

My mom totally sees what we see now after repeatedly talking to her about it and giving her information. It helps that his preschool teacher also saw it and now his kindy teacher.

My husband's parents still deny there is anything different with Zachary. But then again they deny there is anything wrong with my ADD, bipolar husband too. They said he was just a bad kid.
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Old 09-26-2007, 07:22 PM   #15
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Re: Special needs mamas, ? for you...

YES!!!! I thought I was the only one that thought this way. Madeline's OT has said she has SID aswell as the other thearpist she has seen. She went for her Feeding Clinic Evaluation this past Monday and they want to see her 2 times a week for OT, Speech and Feeding. They also mentioned to use of getting her into a developmental pedi and possiably a neruoligist (for night terrors and some other things). When I called my mom & told her all she said was that's a lot of testing for such a baby and she does eat and starting to talk....basically implying that it was not needed (or that's what I thought and felt). MIL said that DH was a picky eater and she saw nothing wrong with it either. It makes me doubt myself that what I am seeing (and apparently all her specilist, my DH and her thearpist) is really there. I was in tears after talking with both my mom and MIL about this due to the lack of emotional support from both of them.

Anyway, I am so glad I am not the only one out there experiancing this emotion.
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Old 09-26-2007, 08:06 PM   #16
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Re: Special needs mamas, ? for you...

i have

DD was behind and i knew she was and my mom kept telling me "shes a preemie, shell catch up"-- i knew she wouldnt- something was wrong. I got her evaluated and sure enough my DD was as far behind in all areas of development as 6m!!!! now a program called Help Me Grow works with her in our home 1x every other week and she is only 2-3m behind in gross motor and now we found out speech...

even the Pedi said DD was "just a preemie, shell catch up" when i finally said no she needs evaluated, something isnt right.
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Old 09-27-2007, 10:49 AM   #17
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Re: Special needs mamas, ? for you...

We got the same thing too. Dh told me not to even talk to my mom about Aspergers anymore because she just shot me down. We are pretty sure ds has it, and he is in the process of getting eval'd (did our phone eval last week, and will be doing our face to face soon). In learning about him, I learned that I have Aspergers...and boy does that explain a LOT. I think my brother has it too, and I think my Dad and his two sisters have some SID stuff a the very least. So my mom thinks we're all just normal and nothing is wrong with any of us. I think my mom has some issues too, but she'll never believe that.
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Old 09-27-2007, 12:19 PM   #18
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Re: Special needs mamas, ? for you...

Oh yeah... my step-mom actually argues with me that there is nothing wrong with him and walks away saying "Gee, they'll say anything is wrong with your kids to get your money and you buy it." UGH!!! Generally, I ignore it and just keep on doing what I know is right. You can't tell anything is "wrong" with him by being around him for one hour a month.

Of course, I'm guilty of "hiding" his issues as well though. I avoid the battles, the melt-downs and the fits when people are around so a lot of my family members never even saw it... but worse, thought I was a bad parent because I didn't "handle" him but I always knew what would come from my "handling" it so I avoided... now that most of my family knows, I don't do that anymore and they see that how he reacts to a lot of things is not normal. My step-mom still gets all in a huff if I say anything about it so I just don't talk about it around her anymore... but I hate doing that.
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Old 09-27-2007, 02:00 PM   #19
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Re: Special needs mamas, ? for you...

Mommy follow your mommy gut. My ds(almost 8) has downs we did not know until his birth. My ex inlaws would not even look at him once they found out the he has downs. And did not want me to ever get preggo again. Thank god they are my ex's.

I was told by my 1st ped not to worry about the downs dx(Jakob has mosic downs not all his cells carry the triple 21st) So doesnt have a ton of markers. He walked at 15 months and talks up a storm. But that could also be I got him into EI at 4 months of age. even thou I was told to wait till he was older to have an eval done.

J is now in the 1st grade with only OT pull outs 4 times a week.
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Old 09-27-2007, 03:56 PM   #20
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Re: Special needs mamas, ? for you...

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Oh yeah... my step-mom actually argues with me that there is nothing wrong with him and walks away saying "Gee, they'll say anything is wrong with your kids to get your money and you buy it." UGH!!! Generally, I ignore it and just keep on doing what I know is right. You can't tell anything is "wrong" with him by being around him for one hour a month.
Exactly
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