Schools and Differently Abled Children

[SereneOne]

I am new to all this and I would greatly appreciate it if any of you would share your experiences and offer advice on the best way to work with, or if it becomes necessary, work against the school system.

My daughter will be five in October. She has VATERS/VACTERLS Association, it is an acronym for multiple birth defects. She has the V-vertebrae and rib anomalies /missing and fused ribs, A-anal issues, they recently found she had an imperforate anus with fistula and when the surgeon got in there she also had Hirschsprung's Disease, which they repaired in late June, C-Cardiac, she has an 11mm hole in her heart/ASD, which will be repaired this Monday coming up, R-renal, she has one good kidney/multicystic/one dysplastic. She had tethered spinal cord which was repaired in 2005, she had hypoparathyroidism which resolved itself in 2005, she has RAD and has now gone from a nebulizer to inhalers. She takes two puffs of Flovent a day and uses Xoepenex if she gets sick, she does tend to get upper respiratory infections easily because of her rib defects (they do not support her organs such as her diaphragm as well as they should). She is also tube fed, Pediasure six times a day, eight ounces every three hours. She does eat by mouth and when we get her weight up and she eats totally by mouth, we will be able to have that removed.

My only experience with the school was that her ES that came to the house (we had OT, PT and SP that came to our home when Meg was a baby) discussed with us that when she turned three it went to the school district. Meghan was evaluated by a social worker, a school psychologist, and a speech therapist. Meghan did well cognitively, but at that point she did have strength and speech issues, also social ones because all she did was spend time in doctor offices or at home with her four teen siblings and had their attitude. They recommended a local center with a very good reputation and Meg was put in part time and then full time this year. They told us a few months ago that Meg had improved in so many areas-socially, physically, etc and being that she was down to one special service-OT (she still has strength issues, she writes very lightly,etc), and that she was not receiving the mental stimulation she needed, so Meghan graduated although she gets to continue through the summer program.

Well, someone was suppose to come from the school district and evaluate Meghan for k4. My understanding is she would be in a "normal" classroom (i hope that is not offensive, I do not know how else to word it) but with a paraprofessional that would assist her? (She is not potty trained, she did not have an opening (anus) until just over a week ago...now she poops normally and we are working on it, she has strength issues, etc) I would have assumed the para would handle the tubefeedings too...it is not complicated in the least, you "snap" the tubing with the syringe to the opening in her tummy and pour Pediasure a couple ounces at a time into the tubing, letting it go down at a slow steady pace until all of it is in and then snap her back up, she also eats by mouth) but some people have said a nurse will probably handle that. She will also still need OT because of her strength issues.

I was somewhat concerned because I can't stand the school politics that I have experienced with my older kids, however my experience with my special needs little one has been exceptional so far. Everyone has been on the ball...BabyNet, etc. and very helpful, wanting the best for Meghan. However, I have heard so many "horror" stories that I am worried.

What have been your experiences, good and bad? What advice would you have for a parent treading these waters for the first time?

Thank you all so much for your time and words of wisdom, they are GREATLY appreciated.

 

[swimlib]

In the school district I work for, the nurses handle the tubefeedings. Besides that, the para would take care of changing and assisting if needed on other problems.

Most schools have the nurses handle the feedings, but know that some schools will not touch them if they pop out. I was hauled out of a chem class sophomore year to change my sister's g-tube because the nurses wouldn't touch it.

 

[SereneOne]

This is Meghan...I always worry when I tell people who do not see her in person her issues they think, what does this child look like for goodness sake...she is small for her age--39 inches, 27 pounds but between getting rid of the Hirschsprungs and gaining an anus and heart surgery, she should begin to put on weight...

 

[SereneOne]

In the school district I work for, the nurses handle the tubefeedings. Besides that, the para would take care of changing and assisting if needed on other problems.

Most schools have the nurses handle the feedings, but know that some schools will not touch them if they pop out. I was hauled out of a chem class sophomore year to change my sister's g-tube because the nurses wouldn't touch it.

Meghan's has never popped out, I hope that never happens. So I guess she will go to the nurse twice a day for her tubefeedings, they take like 15 minutes, so that hopefully will not interfere with anything.

 

[bookwormde]

In most areas “child find” is what they call the program which identifies children with disabilities by evaluating all children before they enter K (this is theoretically) I believe with a request they will do it as young as 3.

Call the district again, sometimes using the label helps. In many areas it is actually handled through private contracts by organizations, which are familiar with a wide range of disabilities and the services that are available (both in school and in the broader community)

Sounds like you are making great progress


bookwormde

 

[belle&beast]

I am an SLP in the preschool program of the public school system, but I have worked in early intervention and elementary schools. I agree that the nurse (ours is a health aide) will give the tube feedings, but the paraprofessional and resource teacher should be trained as well in case they would need to help out. This also goes for the meds administered at school.

As far as dealing with the staff, you can always get the assistance of a parent advocate if it would make you feel more comfortable. You should be given a copy of your Parental Rights at the beginning of any meeting and they will give you the information you need if you do have problems that require further intervention.

All that said, please be open-minded with the teachers and therapists. Most of us are in our professions because we love children and want to make a difference in their lives. I sit on both sides of the table- I am a professional and a mom with a child with an IEP for speech (yes, I am an SLP ) and another child with medical issues that are not yet clearly diagnosed, so believe me, I understand feeling protective. I just think if you look at your IEP team as your partners who all have your child's best interest at heart, you may not have any of the difficulties you are anticipating. Also, maintain good communication with all of your child's teachers/therapists- having open communication often stops problems in their tracks.

 

[abarnold]

My youngest child has been incredibly lucky I would say. He was born at 26 weeks and has gone through several issues- but nothing like your dd. He has only had 5 surgeries (will probably be having another one real soon) but he has lost 20 degrees peripheral vision in each eye, he has PVL which is a form of brain damage where he has 75% damage and 75% of that is actually brain dead. He has chronic lung disease where he was on supplemental oxygen until he turned 4. he still has sections of his lungs that are collapsed. he is severe ADHD which is normal with his brain function. he has a Nissian wrap and had a G-tube until last month when he FINALLY got it removed. He has a growth hormone deficiency he is the same size as your dd and he just started on his growth hormone injections. All in all he has some issues but he has been incredibly lucky that he didn't have more.

As for him in school- he is in a class known as PPCD (preschool for Children with Diasabilities) at the elementary school where my other children attend. he has been going there since he turned 3. He will actually get to try the "regular" pre-school next year with a stipulation that if he is having a rough day he can go back to his PPCD class to unwind. At our school the teachers are the ones that give the pump feedings- however they will not replace them- have had to do MANY replacements in the nurses office. My son has been extremely lucky in the fact that his teachers are AMAZING and that we don't have any issues with the school.

Now they will want to fill out what is called an IEP which is an individual education plan (at least that is here in Texas is might be different there) and we have yearly meetings to talk about his progress. Now I know with my child he ended up missing alot of school this past year due to the fact that he has a weakened immune system due to his issues and numerous dr appointments. we fought with the school because they wanted to "hold" him back in the special classes because he had missed too many days I told them it's not like he's going to a "normal" class- they said well you don't want that on his permanent school record- well okay it's not like he's going to Harvard

For handling the school- I would let it be known to them that you would like free reign when it comes to dd's school. Get to know the teacher and find out what their plans are with your child. I have a VERY close relationship with the teachers and I go up anytime I feel is necessary especially if he's had a rough day. Let them know that you respect them but that they need to respect you as a parent that you have been the main staple in your child's life until now but that it's best that his teachers and you keep a close working relationship to help better your dd's learning experience. Most likely she will have a paraprofessional assigned to her- if that is not possible (here it isn't since we have a DOD school) then she'll be assigned to a class where there is already a paraprofessional that can take on another child. If at any time you feel that she is not getting the care that she needs feel free to let the special education coordinator know. They are there to help you but most importantly they are there to help her.
I'll quit rambling!!! Good Luck!!

 

[BeckyScott]

I was scared to death when Justin went to preschool. And he did fine. They were great with him.

I was scared to death when he started kindergarten. And he did fine there, too.

It is soooo hard to let go, even just a tiny bit.

My suggestions: Get to know everyone. Know the names of everyone so they all know you on sight. Meet the nurse and talk to her, ask if she can be at the IEP meeting. And let them know it's fine to call you, you don't mind them calling. Volunteer for everything- it's the easiest way for you to get access to the classroom and to see for yourself the dynamic there. It seems the schools around here at least, have a great deal of trouble finding moms to volunteer for parties and field trips (especially the boring field trips, LOL) and all the grunt work where they just need a warm body. If it's possible, do the drop-off and pick-up yourself, so you actually see the para every day and can ask how things went-- if you can't do that, set up a traveling check-list in her backpack.

 

[Eeyores Butterfly]

Since she appears to function at the same cognitive level as the other kindergartners based on your description, she should be in the general education classroom the majority of the day. She will be pulled-out for her different therapies (OT/PT) and her tube feedings. In most districts that I have been in, the para will assist in the bathroom, but the nurse will handle the tube feedings and any other type of treatments (nebulizers, etc.) since that is a medical issue. Paras would not normally be qualified to handle that in most districts.

Some districts have been very reluctant to provide for any kind of "nursing" care in the past, there have been some lawsuits about it. What will help is if your district has had students with nursing needs before. Many families come to our area for the Sp. Ed program, so even though we are rural our schools have handled quite a bit and it is old hat to us. Most families are satisfied with our district. The surrounding districts that do not have the same population on the other hand...

What will help is if you have a family friend who can come to an IEP or 504 meeting with you, or an advocate from an organization. They can be very overwhelming, so having somebody there who knows the case and can provide moral support is normally a huge help.