The Day-to-Day Reality

Well, here we are. Not the outcome that many of us wanted, but here we are. So let's get together, share, comfort each other....because we are not alone.

What was one of the best pieces of advice or resources that you received when your child was first diagnosed?

School is starting sooner this year then I expected (considering we got out in June!) and I am not ready for this. Our previous school year didn't have the best of experiences so I know that adding to my nerves. This year I am trying to plan out a better approach so I hopefully have a much better relationship with his teacher. I am 100% not speaking ill of his last teacher. We just didn't communicate well with each other. I do better with more direct communication and less "fluff" I know my child has behavior challenges so I rather you speak more straight forward. And on the same level I do genuinely want to know how he is doing even if he is doing well. Our school doesn'…

I would love to put together a list of recommended books for parents and caregivers of disabled children. There have been so many that have helped me over the years. Hit me with your favorites and I'll compile them for the group.

What I Think is: Supporting and caring for disabled child involves understanding, patience, and love. We can start by learning about child’s specific needs and abilities, which provide the right support. Create a daily routine that includes their needs and interests to give them structure and comfort.

My child is what I’ve heard called explosive or extreme. She (6yo, kindergarten) has an ADHD-C Dx and struggles severely with emotional regulation, self control, and impulsivity. She’s also anxious and defiant. This manifests as physical aggression - hitting, kicking, biting, scratching, pulling hair, throwing objects, tearing things up, knocking over furniture. Although we have a pretty good team at school plus her a pediatrician, psychologist, psychiatrist, and behavioral therapist, I’m overwhelmed and drowning. It’s constant, unrelenting trauma. I’m trying to prevent injury to her and myself, I’m constantly vigilant, I never relax, and I’m communicating with school dai…

The post about the extraordinary burden of IEPs on Moms got me thinking today that the biggest burden I carry is the awareness of the extent of my child's challenges. He presents typically which creates an illusion of competence. The reality is that he is falling further behind grade level at school, and further behind his peers socially and with ADLs. I am holding him together in multiple ways and if something were to happen to me I have no idea what would become of him. Given his skill set I cannot imagine him living independently or supporting himself financially. I'm not worrying unrealistically. I worked with his age group for over 10 years and can see how far outsid…

My child - in jr high - was targeted by students taking secret photos in the bathroom (while peeing; pants and underwear off) without consent and posting them online. The school knew and did not report it to Childline in PA as is required. We requested a DOE approved safety plan, which they refused to complete or allow further discussion. 2 kids confessed. The school refused to tell us what form of disciplinary action was deemed appropriate under their policies for an action of this type. They also refused to share their bullying policy. Only in juvenile court (for the perpetrators) was it revealed the discipline they chose: 1 day suspension for one student; no disciplin…

My little one is 6 years old and minimally verbal. He was denied a paraeducator in his initial IEP last month. Just this past week he’s had aggressive episodes at school with his classmates. He hasn’t really shown aggression to others since he started school. The last time was probably 4 years old at home when his sister didn’t give him any space and listen to him when he kept saying “no” so he bit her. Anyone advice at what might have triggered this sudden aggression?

One of our community members shared something that got me thinking. She's a Reading Interventionist and former Special Education teacher. A parent recently told her that another student sometimes makes comments that make her child feel "stupid" for getting reading help. Oof. First, that parent's response was exactly right. She had great advice for him, reminding him that we all have things we are good at and things we need more work on. That's true for kids and adults. But it got us wondering... What can we teach kids to say in these moments? Not every child is ready to ignore it and walk away. Some kids feel more confident when they have a …