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Family / ??'s / Answers user banned
3rd Jun '13

So we went on a road trip and saw lots of family we haven't seen in years. And a lot of people asked about LO's hands and movements, walking, talking and general behavior. My in-laws said they didn't want to ask since they know we will tell them when we are ready- so we finally did tell them. But pretty much no one knows. We were going to wait and go with the plan we set up with his physical therapist, but now it feels like we should tell the family. Especially the family we see regularly who must wonder, but don't want to push us telling them.



Our plan was to wait until he was school aged and behind or still making odd movements to get an MRI so we don't put a permanent medical mark on his record and that is still the plan at this point. But, his PT and another doctor have both confirmed he has markers for a form of cerebral palsy. And they are both positive he has it to some extent. The only thing the MRI will do is confirm where the brain damage is and once in school help him receive services. At this point he has receive all the appropriate therapy and they are treating him as a stroke patient.



So do we tell the family or not? Obviously it is up to us. I'm wondering what others might do or like if they weren't the parents but family around the child... Kind of an outside perspective. DH and I are questioning ourselves on what the 'right thing' is in our situation. So input, please?

Buzz and Almond Joys momm 2 kids; Albuquerque, New Mexico 12593 posts
3rd Jun '13

Personally I share that sort of thing with family right away. And they have always known out concerns. Do what you are comfortable with.

[JadeLee] 1 child; Minnesota 12190 posts
3rd Jun '13

My family is close so they all would have probably known that it was a possibility right away. But do it when you are ready, I mean at this point might as well wait for the confirmation.

♥TwinsRock♥ 2 kids; Buffalo, New York 4471 posts
3rd Jun '13

Yes, I would tell them. They have to wonder/worry and it would ease their minds. I'm very open with family and friends about my sons SPD.it helps them understand him more and understand why I patent him differently than my daughter.

7 blessings so far.... Due February 3; 6 kids; Glen Burnie, Maryland 8799 posts
3rd Jun '13

Telling them sooner rather than later will help the family be able to support your family emotionally for the long road ahead. It will give them a chance to research your LO's situation so that they can interact appropriately with them.
It will help all around for others to be prepared.

user banned 3 kids; Washington 15083 posts
3rd Jun '13

<blockquote><b>Quoting [JadeLee]:</b>" My family is close so they all would have probably known that it was a possibility right away. But do it when you are ready, I mean at this point might as well wait for the confirmation."</blockquote>



We might not ever have confirmation. The PT said we could do an MRI so we knew where the damage was. But it would change nothing about the treatment receives. It would basically just show us am image of the damage. And, if he pulls through it and has no issues at school age then that would be on his record and hinder him as an adult. So that is why we aren't getting an MRI unless we have to as he gets older and NEEDS an official record and diagnosis of it.. If that makes sense.




That is one of the reasons we aren't telling anyone.
The second reason, because our middle son is special needs and has a lot going on and the family already worries about him/ us as a family and we haven't wanted to add on an additional worry.

user banned 3 kids; Washington 15083 posts
3rd Jun '13

<blockquote><b>Quoting 6 blessings so far....:</b>" Telling them sooner rather than later will help the family be able to support your family emotionally ... [snip!] ... your LO's situation so that they can interact appropriately with them. It will help all around for others to be prepared. "</blockquote>



We've known for almost a year and that's kind of where I'm at. If it is that obvious to people who are never around him- how obvious is it to those we see regularly? And it might be better for them to have an understanding.

7 blessings so far.... Due February 3; 6 kids; Glen Burnie, Maryland 8799 posts
3rd Jun '13
Quoting ♫ boobook ♫:" <blockquote><b>Quoting [JadeLee]:</b>" My family is close so they all would have probably ... [snip!] ... a lot going on and the family already worries about him/ us as a family and we haven't wanted to add on an additional worry."


If your sons issues are as noticable as you mentioned than i would think that sharing the information you have on his condition would ease your family members mind. It would be aweful for them to all be sitting around talking & speculating what could be wrong.

user banned 3 kids; Washington 15083 posts
3rd Jun '13

<blockquote><b>Quoting 6 blessings so far....:</b>" If your sons issues are as noticable as you mentioned than i would think that sharing the information ... [snip!] ... your family members mind. It would be aweful for them to all be sitting around talking & speculating what could be wrong."</blockquote>




He drags one leg when he's tired, bends the weak leg when standing so it's obvious he doesn't weight bare on the one side more than he has to and does jerky and odd finger movement bends and hand jerks and is very touchy with things- sensitive I guess. And he kind of does a jerky hand twitch in his eye. The older he's getting the more obvious it's appearing.

7 blessings so far.... Due February 3; 6 kids; Glen Burnie, Maryland 8799 posts
3rd Jun '13
Quoting ♫ boobook ♫:" <blockquote><b>Quoting 6 blessings so far....:</b>" If your sons issues are as noticable ... [snip!] ... sensitive I guess. And he kind of does a jerky hand twitch in his eye. The older he's getting the more obvious it's appearing."


please tell them so they can enjoy him how he is and learn his limitations. You need people that can help encourage him to reach his full potential w/o pushing him too hard. I myself have 2 children w/''specail needs''. DD#2 has NVLD & my son has Aspergers. Because they appear relatively ''normal'' some people push them too far :(

user banned 3 kids; Washington 15083 posts
3rd Jun '13

<blockquote><b>Quoting 6 blessings so far....:</b>" please tell them so they can enjoy him how he is and learn his limitations. You need people that can ... [snip!] ... needs''. DD#2 has NVLD & my son has Aspergers. Because they appear relatively ''normal'' some people push them too far :("</blockquote>




We got this this weekend. One of my relatives said, "you need to make him walk, he's weak because you carry him and push him in the stroller too much". He's 20 months old and he tires easily. I know his limitations and work with a specialist. I meet him where he's at and do his exercises with him, so the stroller, sling isn't really the issue. She said, the older kids are weak because muscle strength starts at this age. She has no kids and the other kids are weak because of apraxia and low muscle tone, weak joints. It's a life long thing, not caused by this or that- just happens. :roll:

7 blessings so far.... Due February 3; 6 kids; Glen Burnie, Maryland 8799 posts
3rd Jun '13
Quoting ♫ boobook ♫:" <blockquote><b>Quoting 6 blessings so far....:</b>" please tell them so they can enjoy ... [snip!] ... because of apraxia and low muscle tone, weak joints. It's a life long thing, not caused by this or that- just happens. :roll:"


my dd w/nvld also has low muscle tone and fatigues easily (she is 13 now), She really dislikes gym class because she cant keep up w/the other kids. She often pushes herself to hard and ends up hurting herself because she doesnt want to admit she cant do it. Part of her specail education plan involves her letting the teacher or aid know when she needs help w/things or a break.....she is just stubborn.

user banned 3 kids; Washington 15083 posts
3rd Jun '13

<blockquote><b>Quoting 6 blessings so far....:</b>" my dd w/nvld also has low muscle tone and fatigues easily (she is 13 now), She really dislikes gym class ... [snip!] ... education plan involves her letting the teacher or aid know when she needs help w/things or a break.....she is just stubborn."</blockquote>



Aw sad. It's good she wants to keep up, but listening to your body is important too. What is nvld?

7 blessings so far.... Due February 3; 6 kids; Glen Burnie, Maryland 8799 posts
3rd Jun '13
Quoting ♫ boobook ♫:" <blockquote><b>Quoting 6 blessings so far....:</b>" my dd w/nvld also has low muscle ... [snip!] ... Aw sad. It's good she wants to keep up, but listening to your body is important too. What is nvld?"


Non-verbal learning disorder (basically anything not related to speach or reading is very hard for her to comprehend) Facial expressions, sarcasm,tone of voice, cause & effect, basic reasoning skills are all ''foriegn'' concepts to her. She has an IQ above the 90% and the reading rate and spelling accuratcy at a college but the socail/reasoning skills of a 1st-3rd grade along w/sensory issues , low muscle tone and poor co-ordination.

......................... Oregon 14226 posts
3rd Jun '13

Personally, we share everything we can with family. So that they can know their limitations, what they can do and what they can't and so we can involve them in things they would like to do.



I understand not wanting the mark on his record. That's understandable. My son's dad fought me tooth and nail all the wait to the bitter end about getting our son diagnosed with autism, even suing the doctors who didn't preform a c section since he's technically disabled as well.



So now it sucks, I have a child who's partially disabled, and has autism. But i've never held it from my family, it's significantly noticeable, his disability and his autism, but they work with him since they know his strengths and his weaknesses, it's all we can do.