We had our official first transition meeting with the school district today. Hannah ages out of early intervention in just 6 months! I can’t believe it!
It was a very informative meeting. We talked about the options that we have such as putting Hannah into a school setting versus teaching her in a home setting. We talked about Hannah being able to ride the bus (yeah, not going to happen LOL). We talked about socialization, skills, and everything in between.
- Hannah has to get approval from Dr. Bernstein (her specialist) in order to be able to attend school.
- The school would be in a local school, hopefully the kids’ elementary school!
- School would be 4 days a week, 2-1/2 hours a day (10 hours a week) and would include PT/OT/ST, etc.
- They would provide her any resources or equipment she may need while she is there (wheelchair, special setup, etc.)
There is a HUGE negative for me. There is only one teacher and one assistant in the class. There would be no one dedicated full time to Hannah. I asked if Hannah’s nurse could be there, in the background even. “Something you have to discuss with the school district but most likely not because of liability issues.”
Everything sounded so exciting, so perfect. The socialization, the learning, just getting her out with new experiences. Everything I have wanted to give her for the past year.
The only one thing that is sincerely freaking me out is what happens when she has a tantrum (which she will because, let’s face it, she is spoiled), which leads to a breath-holding spell? If she can’t be calmed down by someone she trusts and feels completely comfortable with, she may end up having a seizure again or even an oxygen-depravation stroke from the breath-holding spell (same as what happened back in May).
The school district representative suggested that perhaps myself or Hannah’s nurse can ease her into the classroom setting by being there for the first hour in the beginning. As much as I would love to be that person (and probably will be at first), I think Hannah’s nurse is a better choice because, well, she isn’t Mommy. Hannah is more independent with her therapists when her nurse is there (but will not do anything unless she has someone she trusts there).
Honestly, I can totally picture myself sitting outside the school door every single day during those 2-1/2 hours….just in case.
No one else thinks Hannah will be as bad as I think. I know it is the mommy instinct in me, the protective nature over my littlest cub. I hope I am being overdramatic and overreacting. I just don’t think I am not.
We scheduled Hannah’s diagnostic testing for May. This will give us the tools we need and the tools the school district needs in order to come up with her IEP. School doesn’t start until after summer (same schedule as Ethan and Abby). Even though it is just a few months away, a lot can happen in those few months between now and May as well as between now and the start of school.
I am not going to let myself stress over it just yet. But it is definitely something in the forefront of my mind. Obviously, this is something I need to start working with Hannah on now. For now, I plan to remove myself from Hannah’s therapy sessions and stay hidden so Hannah can work with the therapist while having her nurses there (whom she just loves). That is a good first step, especially with PT and OT where she just does not like even walking in the door!
As soon as everyone left, I texted Hannah’s Texas early intervention coordinator to tell her that “this day” had come. When we first started talking about this meeting back when Hannah was just a few months old, it seemed so far off in the distance. It was one of those ‘events’ that I was scared that Gaucher’s Disease was going to rob me of. She had grown incredibly attached to Hannah from the beginning (even putting a stipulation in her job promotion that she gets to keep Hannah as a client even though she would not be working directly with kids anymore). She was so incredibly excited that we reached this milestone, this first “transition” meeting.
I will admit, I am a very proud mommy. Today was another milestone reached. Now I just have to get over my mommy fear and figure out how to get this to all work out without giving me a nervous breakdown!
This is something we can talk about in Vegas. Special ed has very specific rules. Excited for this huge transition in your lives!
Check out Wright’s Law when you have some time. That site has been invaluable to us.
ditto on Wright’s law. There are many places/districts which allow outside nursing care. It must be written into her Plan of Care –and presented at evaluation. The more documentation about why it would be great for her to be with peers at school, yet monitored by nurse–the better! It may not be easy, but hopefully Hannah will love going to big girl school!!
Double ditto on wrightslaw.com, its invaluable! If the school district doesn’t allow the outside nursing for a very medically-fragile child, be pre-emptive and hire an advocate. They will fight for her rights. In my ds’ school dist, a medically fragile child (CP & epilepsy) was provided a nurse that stayed with the child from the time she boarded the school bus, thru the school day until she got off the bus at home. It might be something to look into.
It’s absolutely within your rights to insist a nurse be on-site while Hannah is at school. Lucien is attending a smaller, self-contained class (rather than an integrated preschool class with both typical and SN students) specifically because there is a nurse on-site during all school hours. Wrightslaw is, as others have said, an excellent place to start. There are also usually difficult-to-find websites detailing special education provisions in each state; you could start just by googling Nevada special education law.
I can say that in both CO and NY, there is NO WAY a school district would allow a child with a trach to be *without* a nurse on-site. A child in a different class at Lucien’s school has a trach, and the nurse is not just in the room, but literally right next to him during meals and phys ed.
Good luck! It’s a major ordeal getting things together for school, but having all of Lucien’s therapies in one place- and the invaluable socialization he’s getting- have been a tremendous benefit to him.
AND they should be providing the nurse so your nursing for home doesn’t get eaten up by school hrs. Don’t go this one alone! Special ed waters can be hard to navigate, and besides, the energy it takes is better spent elsewhere if you can get an advocate:)
One of my favorite places to be when I was a substitute teacher was in the “special needs” classes because I actually WORKED with the learning and taking care of the children. Some things I, of course, was not allowed to do because of certification, but there was never a moment where a child who needed immediate attention that it wasn’t given. The school where I worked the longest, for most of that school year actually, had about six classes for these children and each class they were placed according to need as well as the other requirements and guidelines.
It is definitely a lot of work for just the teacher and the assistant, and each class I was in their was a child who had higher needs than others. The teachers in these classes were the best I’ve seen in schools here county wide because they have a love and desire as well as skill to help and work with these children. I do recall a nurse being available for one of the children so, as the other “experienced” moms have pointed out, is something to definitely get made available.
Concerning Hannah and being spoiled, there was a child – Asia – who I’ll never forget. She was so spoiled by her mom and knew what she could “get away with.” When her mom walked in she would act as if she was having the worse day ever, but would be such a “good girl” for the teachers. (Of course, not all the time!) The transitioning time and everything about acclimating her sounds like a good idea and I so hope it works out.
I’m excited to hear that Hannah will be going to school (Yes, “will be” … thinking positively…) … just loving the sounds of meeting milestones.