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When my daughter was young, I used to dread the transition from her summer program to her school year program even though Elizabeth was looking forward to it! Along with the change in the New England weather from beautiful hot summer days to fall and flu season, came numerous threats to my medically fragile child’s health!

Elizabeth was blind and in a wheelchair. She didn’t speak and used a lot of medical equipment to eat and breath and well, just live. Getting ready for the school year when you have a special needs child is challenging. 

For me and so many other parents, the end of summer signaled the time when we hit the reset button on our child’s educational plan. New teachers and other school personnel come into our child’s life. There are perhaps changes in classrooms or services. Definitely, this is the time when routine’s change. It’s no wonder that this was always a time when I was anxious and losing sleep.

But I learned a lot during that time that I have turned into a back to school checklist for parents of children with special needs.

A checklist for parents of special needs children to start the new school year

As a parent and a professional who advises families every day about these issues, I wanted to give you some tips that really help start off the year with your best foot forward!

1. Review your child’s Individualized Health Plan 

It is critically important that you understand what services the school and the school district are contracted to provide to your child.

  • Does it provide for therapies?
  • Is your child entitled to a one-to-one or a nurse caregiver?
  • Who will be delivering these services?

This is the time to check the credentials of all the school personnel who will be working with your child. These people are on your team for the duration of the school year.

  • Is your physical therapist a PT Assistant or a fully licensed physical therapist?
  • Will your child be meeting with a psychologist or a school counselor?

An Individualized Health Plan (IHP) is necessary when your child requires special medical attention during the school day, such as the delivery of medication, life-threatening allergies, and special food such as G-tube feedings.

The IHP will discuss what treatments are needed when they will occur and who will administer them. If you don’t have an IHP, but feel that you should, then you need to devise one and call a meeting to discuss it.

2. Update your team with any new information about your child collected over the summer

Many families use the summertime to get new evaluations and testing done. It is a time to see specialists, have elective procedures, and try new equipment or activities.

Share any new evaluations or test results with your school team. Share summer program or camp notes too. Let them know what your child has accomplished or if there has been any loss of skills. This can happen over the summer when routines change.

It is difficult for parents to feel open about sharing information with their school or school district. They don’t always feel that they are heard and sometimes the relationship is adversarial. 

It is in your child’s best interest to always have this information in their record. Even if your team ignores the information provided, at least you have come to the table with open communication. Plus, if you ever need to have a formal proceeding to advocate for your child, this will make a positive statement for your case.

School personnel often feel uncomfortable when they think they don’t have all the information. Schedule small and less formal meetings with key staff such as the teacher and the nurse, to put everybody at ease. Open those lines of communication early!

3. Tour the school and the grounds

If you are changing placement, or just changing classrooms, tour the school or the grounds to get familiar with the setting. Look for any hidden obstacles for your child and discuss mobility issues, proximity to the nurse, and any classroom spacing issues that need to be considered. Also, do you have medicine coming in with your child every day or special food or allergy considerations?

What are the emergency procedures for the school and for your child in case of emergency or crisis? When my daughter was in a new school, I would always speak with the emergency response team in the area to be sure they had all of the pertinent information about her.

4. Communicate and communicate some more

What will your ongoing communication system look like with your team at school? Many parents favor a notebook that goes back and forth from school to home. Some set up interim telephone calls. Make a list of phone numbers to call if one is not provided to you including teachers, nurses, and therapists. Make sure you know the proper procedure for classroom visits and check-ins. Many schools say they have an open-door policy, yet there are many concerns about school safety that need to be balanced as well.

5. When All Else Fails…

Ask for a meeting to discuss your concerns. It can be a formal TEAM meeting, which you have the right to ask for at any time, or it can be an informal meeting with the teacher, the administrator, or the nurse.

Formal meetings can be very emotionally charged! Bring your spouse or a friend with you to take notes and be a support. As a last resort, you can hire an advocate or an attorney to speak for you and your child. 

Ultimately, the most important issue is to be prepared, start early and advocate, advocate, advocate. I found it challenging to find school staff that would accept my daughter and stop focusing on the liability of caring for her and providing services to her. They could not look past all of her medical issues and see the little girl sitting there in her wheelchair just aching to have a great school year.

Most days it was heartbreaking, but with good advocacy and preparation, I could put folks at ease and bring them to acceptance and comfort so that she could have a good experience – and I hope that you can too!

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