Who wants to think about school a few days before the school year is over in Colorado? When it comes to raising a special need’s child, it is important to always be a step ahead, to always have a plan for the next school year, and to know your rights as a parent of a special need’s child. Raising a Mitochondrial Child with a complex medical history might add complications to managing your child’s IEP and school needs.
For the last couple of months, I have been working with the school district to get a set plan in place for Jacob’s next school year. The first important thing to know is that you should not sit back and wait for someone to contact you. Proactively contact the Director of Special Education in your school district to start the dialogue as soon as you can. If you don’t know who your Director of Special Education is, go to your child’s school district’s website and find the Special Need’s department, and you will eventually get to the right person who can help you.
A first step of the process is often for the school district to evaluate your child. This can happen in many different ways. You typically will have an assigned team that will evaluate your child from different perspectives. In Jacob’s case, we have had psychologists, social workers, special education teachers, and therapists assess Jacob through observations at home and at school. Some teams might ask you to have your child take certain tests to assess their abilities.
My experience in having gone through two assessments is that the single most important thing is that you as a parent is prepared and organized. For a Mitochondrial Child, here are some of the minimum documents you should have ready to share and present to the team:
1. Medical History of your Child
2. Current IFSP/IEP or 504 Plan
3. Educational Documentation
4. Legal Documentation/Correspondence
5. Mitochondrial Awareness Materials
6. Know the Issues
Medical History of your Child:
When it comes to your child’s medical history, it has helped us to divide it into 3 sections of information.
1. Medical history – a short paragraph stating family history of the disease, any special circumstances around the birth of the child, and any major pregnancy events.
2. Summary report – review all major diagnoses your child has, current medications, and physical limitations.
3. Support documentation –health plans currently used in school, seizure action plans, and supporting letter from your key doctors.
For educational documentation, you want to bring any evaluations, goals, progress reports documented by your child’s current therapists and teachers. If you have any standardized tests, you might want to bring them as well as samples of your student’s work. If your child has a current IEP/IFSP or 504 plan, bring a copy as well.
For legal documentation, it is important to save any correspondence with school personnel. If possible, try to always get information and agreements in writing. If you are at a meeting, please make sure someone takes notes. One of the issues we are currently facing is that Jacob’s team made a recommendation to the Director of Special Education that he should stay in his current school, which is also our wish. This was only told to me in person, but not in writing. The Director of Special Education is now saying that she has not heard that from the team, so anything you can have in writing will always help you and your child’s case.
Mitochondrial Awareness Information:
For Mitochondrial Awareness, I have put together my own document about Mitochondrial Disease that I use. I have used information sources from UMDF (www.umdf.org) and mitoACTION (www.mitoaction.org). You can’t assume that the school district will know what Mitochondrial Disease is, and what it means to your child’s school needs. Know the Issues: Common IEP issues that you need to think through before the IEP meeting, and preferably put in writing are:
Medical Equipment Needs
Health Care Plan
For Transportation, you will have to consider if you will take your child to school or need the school to provide the transportation. If the school is transporting your child, is the bus driver aware of the health plan or who is responsible for that during the transportation?
For placement, the most common options will be to place your child in your school district’s home school or offer you homebound services. There might also be a school or class with only special need’s children in the classroom within the school district. You might also want to ask if the school district has a Private School funding option. In our case, a private school has been the best option for Jacob, and the school district has paid his tuition for 2 years. The second thing to consider is a combination of placement. Maybe your child can attend school in early fall and spring, but receive homebound services over the winter? Maybe a combination of partial school days and homebound services is a good fit?
One important thing to get agreement at the IEP meeting is that your child’s learning schedule needs to be flexible. Many Mitochondrial Children will need rest periods or even naps. High and low energy activities need to be combined. The learning schedule needs to accommodate “good days” and “bad days”. There needs to be reduced expectations on “bad days”.
When you talk about modifying the classroom, there are a few things you as your child’s advocate have to promote.
Promote infection precautions
o Hand washing and antibacterial soap
o Avoid contact with sick children and staff
Keep the classroom and transportation to/from school at a comfortable temperature
o You can consult your doctor for specific temperature requirements.
Resting/Quite Place o There needs to be a place where your child can rest, since Mitochondrial children will need breaks. One Mitochondrial doctor I talked to suggested 15-20 minutes activity with equal rest time. For the Health Care Plan, at a minimum the following needs to be included:
o Medications (time of day and side affects)
o Emergencies (what is an emergency for your child and what is the procedure to follow in case of emergency?)
o Equipment (what is needed, and who will provide it?)
In our case, medical consideration is the single most important thing for Jacob going to school. Jacob needs to be medically safe in the school system. A common cold always means hospitalization for Jacob. Jacob has severe epilepsy that can’t be managed by a school para. You need to know what are your child’s primary issues, and be prepared to have all facts and recommendations ready.
This is a lot to prepare, but going into an IEP meeting unprepared might not give your child what he or she needs. It also helps to have information documented in case the meeting gets emotional. You can always go back to the facts you have outlined. I also strongly encourage you to bring an advocate with you to your child’s IEP meeting. You might have a current teacher, therapist or doctor that can help to advocate for your child. The Arc (www.arc.org) has been extremely helpful for us, and we are bringing our Arc advocate to my son’s IEP meeting this week.
The bottom line is that parents, teachers, and children need to work together as partners to enable a child with Mitochondrial disease to access appropriate school services. There will not be one solution. It needs to be an individualized educational plan appropriate for your unique Mito Child, and the plan will most likely also change from year to year.
Good luck on this journey, and don’t ever hesitate to contact Miracles for Mito or me directly for help and suggestions when it comes to your child’s education.
Vice-President, Miracles for Mito
Mom of 5-year old Jacob living with Mitochondrial Disease (www.caringbridge.org/visit/jacobhallberg)