r/SpecialNeedsChildren

im not sure if this is the right place to post this but im hoping that it is and that someone can help. Im a single mom of an amazing 9 year old girl who has Myelo (SB). My daughter is my world and my heart is so heavy and I’m so sad sometimes when I think about how lonely she is . She doesn’t have any real friends that talk to her and she is always on the outside looking in . I’ve tried for several years to make plans with other girls in her class and in the beginning they were all about play dates etc with my daughter . She struggles with social stuff and I’m assuming it has to do with her having hydrocephalus . She isn’t able to really hold any real convos with other kids and she pretty much does the whole “cocktail party talk “ only . its hard to explain so I hope someone on here knows what cocktail party talk means lol . Also with her afo’s , balance and mobility challenges she’s been bullied a lot . She’s been ridiculed , ignored a lot when trying to talk to other classmates , and even physically assaulted (a boy shoved her down when they were playing outside at recess-this boy also calls her weak, tells her nobody likes her and that she doesn’t matter ).

I have had her involved in things outside of school but she still never is able to click with other kids tried everything and I’ve searched online for years to find ways for her to meet other kids that have spina Bifida and other disabilities and it really hasn’t helped either . Also any special needs groups near us don’t have any kids that have physical disabilities and I really think that if she made a friend that she could relate to it would help her so much . now that she’s older she’s starting to tell me how she isnt a normal kid and that she isn’t smart and that she can’t do anything that all other kids can do . Shes so lonely and im her only playmate which of course I don’t mind being but she NEEDS a friend her own age etc.Also I don’t drive right now so i cant just hop in the car and travel out of my town and take her to any adaptive sport or special needs groups.Ifeel like im failing her. if anyone that reads this has any advice or ideas I would greatly appreciate it . Also if anyone has a child with Sb around my daughters age or evena little younger or older and if you are in Michigan please reach out to me .

My son is 7 and hes just starting on those i can see books. Like 6 pages I see balloons. I see dad. Etc

Im trying to help him over the summer get more strengthening in reading. Any ideas of books or tools I can get or even free stuff online

Genuine question because I’m stuck between skepticism and desperation here.

My autistic kid basically rotates the same 3 foods and introducing new stuff feels impossible. We started looking at those all-in-one vitamin powders like Simple Spectrum supplement because, honestly, the nutrition situation stresses me out.

But I can’t tell if they’re actually useful or if parents (understandably) just really want them to work.

Did anyone notice actual differences? Sleep? Mood? Energy? Fewer meltdowns? Better focus? Or absolutely nothing?

Also curious if there’s any real science around absorption/bioavailability in kids with super restricted diets. Like if a child eats mostly carbs + processed safe foods, are they even absorbing this stuff properly?

Looking for honest experiences, thanks!

Long time lurker.

My child has cerebral palsy, epilepsy, cortical visual impairment. She has been in ot, pt since 1.5 years and unable to achieve much.

I always thought i was strong enough with support of family and would be able to manage everything physically and emotionally.

But as time progressed, everybody backed out, which i completely understand as they have their own commitments.

Now that i know that me and my husband are on our own, i feel this life is not worth living. I have suicidal thoughts, looking at the same routine, not knowing about the future.

I dont know how to restart this different life. I was working prior to this and i dont see myself working now as she is completely dependent on me.

My son was diagnosed with a very rare genetic disease when he was 5 months old. He is our first and only. It took a very long time for me personally to be ready to have kids and then we experienced losses. When I finally got my rainbow baby I am hit with this diagnosis. His disease will affect his motor, speech, and cognitive skills. We do not know what the future looks like for him since this is so rare. On top of this news I am having a hard time day by day just taking care of my beautiful boy. When he cries I can't deal. This may be a sign of post partum depression, or new mom stress, or he's more difficult than most babies, or all the above. When he cries, for what feels like forever lately, I spiral down and think "is this going to be everyday?". I want to comfort him and make him happy but there is no one going through what we are going through to reach out to for advice. If one more person hears our story and tries to relate with "oh my baby was colicky too" I will scream. My poor husband must be tired of taking care of a crying baby and a crying wife. This is me venting but also asking out there for some encouraging words or stories of your special need kids. ❤️

What stores have needohs and squishy
toys ?