r/SpecialNeedsChildren

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 ?

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.

We have a 4yo daughter with problems communicating in general and with interacting with her peers. A previous evaluation when she was just about to turn 3 mentioned "probable sensory processing disorder" . No diagnosis at this point, next week we have an intake appointment with a mental health center to begin evaluating for autism. She currently receives speech therapy once a week through Early Intervention and this summer we will be starting additional private pay services. She can communicate basic needs effectively and much more beyond that, but her use of language is quite interesting, to say the least.

Right now she's at a really great Montessori school. We chose it because the environment is similar to those she has done well in in the past and with a low student/teacher ratio. They were aware of her challenges when they accepted her. Until about two weeks ago, she has spent most of the school year quietly going about her business, learning a lot, participating in most things, not speaking much to staff until about a month or so ago and not really engaging with peers. They spend a ton of time outside, most of the time indoors is spent doing very tactile or active things.

Academically, she seems on track with other kids her age in her class (mixed aged class, ages 3-6 although almost all of the 3yos have turned 4 by now).

Now it seems she's she's ready to engage with others and, not sure how to do it properly, is being quite disruptive in class. Disrupting other kids while they're building or working on something. Throwing things, grabbing classmates when she wants attention, and shouting loudly during circle time when they sing songs instead of singing in a normal tone of voice. Until a couple of weeks ago, she was singing the songs appropriately. We had a meeting at the beginning of the week with her lead teacher and another staff member, all got on the same page about what needs to happen and what is happening, and decided that if things escalated then the strategy would be to redirect her to a room reserved for that purpose.

Things have escalated - today she threw things at a teacher. It's not great. So they'll be redirecting her to this other room. I also gave them permission to call me to come get her in the middle of the day if it seems necessary. She has cycled through a series of attention getting behaviors in the past and a firm, direct consequence usually does the job. Like not being able to go to the fun place where she's been acting out.

It's hard to address things that happen at school, when we're at home. The general consensus between us, the school, and other adults who know her is that much of what she does is attention seeking. We've told her that we know she's making poor choices at school and talked to her about what the right choices are. Her teachers think she would benefit from a 1:1 aide so I will be pursuing that via Early Intervention to see if we get somewhere but that's long process.

If we get some kind of diagnosis, the school will write her a detailed IEP separate from what she has through EI. In the meantime they are fine with continuing to help us find solutions but I don't want to wear out our welcome. This is not a school for special needs kids and as a private school, they don't technically have to accommodate special needs although their own handbook states that they will make every effort to accommodate when possible. And they have, they've been wonderful.

Next year I think we'll do 3 days/week instead of 5, giving more time for speech and other therapies. Currently she's leaving in the middle of the day once a week to go to speech.

Her diet is pretty healthy, lots of fruits, vegetables, and protein with relatively low added sugars and she generally sleeps well at night. She is generally physically healthy.

All suggestions are welcome!