As your child's needs change, so will his or her school experience
No matter what grade your child is about to enter this fall, you will have all the concerns of every parent — and a whole lot more because of your child’s neuromuscular disease. There are ways to make the transition to a new school year smoother — and MDA can help.
Before the school year starts, make an appointment to visit your child’s new teacher and scope out the school. Talk with the teacher(s) about your child’s specific needs and answer any questions.
You may want to give the teacher a copy of MDA’s wonderful publication A Teacher’s Guide to Neuromuscular Disease, which is available free through your local MDA office or online (Visit the MDA Publications page and select the “Daily Living with Muscle Diseases” section).
During that initial visit, introduce yourself and your child to others on campus who will interact with your child, including the principal, school nurse and security officer. Take time to check out the bathroom facilities, classroom placement (stairs anyone?), stage (for accessibility — your child may be a future star!) and play areas.
It’s best to be aware in advance of any accessibility issues, says Jackie Simcic-Becker, MDA director of health care services in Cleveland, Ohio. She recalls a situation where narrow doors on the restrooms effectively kept out a boy in a wheelchair. The school district’s idea was to have him use a urinal behind a screen in the classroom. When told that was unacceptable and that due process was going to be initiated, the school managed to get the door widened within a week — but that’s unusually fast.
If the school has two or more floors, can any needed classes be moved to the first floor? Is an elevator available? If your child uses an elevator, what is the evacuation plan in case elevators are shut down in an emergency?
Children with disabilities sometimes can become isolated from their peer group. If this is a concern, work with the teacher, suggests Diane V. Murrell, a social worker at the Blue Bird Circle MDA Clinic at Texas Children’s Hospital in Houston.
“It is extremely important that staff help your child’s peers to remain engaged with him or her socially. It will be helpful to assign rotating buddies to sit with him or her at lunch and recess, and affirm those students for their efforts.”
Before the beginning of the school year, and over the course of the year if physical abilities change, your child may need an assistive technology assessment. State and federal law requires school districts to provide necessary assistive technology (AT) to qualifying students — but parents may have a difficult time convincing their district that AT is necessary. To boost success, be sure you know what to ask for and why. (For more information, see How to Get Your Child’s School to Provide Assistive Technology or Help with Learning Disabilities, Quest, March-April 2008.)
Create an atmosphere of trust and collaboration with the school’s Individualized Education Program (IEP) team. Share information and listen and ask questions that focus on the problem: “My child has a neuromuscular disease, and he’s losing his ability to write with a pencil. How are we going to address this?” A voice-recognition computer might solve this problem, but start by looking for simple solutions that could work as well — or perhaps even better — than the high-tech ones. Down the line, the school will be more amenable to providing costly equipment if it knows less costly alternatives have been tried.
Cover all the bases. For example, if the school is providing a high-tech device, can your child take it home at night to facilitate homework or to practice using it?
Set up an IEP review meeting any time there’s a significant change in your child’s abilities or medical needs, or whenever a new piece of medical equipment is introduced.
From a mobility standpoint, is fatigue increasing? Is it time to go from a walker to a wheelchair, or from a manual to a power wheelchair? If so, is the classroom desk the right height to roll under with a wheelchair — and is it facing the same direction as the other students’ desks?
If your child now has a tracheostomy and requires suctioning, or now relies on catheterization rather than normal toileting, help make this transition easier by bringing health care professionals to the IEP meeting to help school staff understand how these new needs will fit into the school environment.
It’s best to start this process before the need is absolute, because there may be a time lag in getting necessary medical letters and mandatory training for school aides. If there’s no time to plan, try to be flexible. When my daughter Katie, who had spinal muscular atrophy, had an emergency tracheostomy in the second grade, I ended up sitting in class with her for six weeks until the school district’s mandated trainings all could be completed. She could have had homebound teachers during that time, but she really needed to be back in school and with her friends.
If your child takes medication during the day, meet with the school to go over the medication schedule and develop a dependable plan. Create a chart where personnel can note the date and time whenever they give a dose. You also may want to have your child wear a MedicAlert bracelet so, if a problem arises, emergency medical providers can follow up quickly.
Aides are a critical classroom resource for many kids with neuromuscular diseases, helping them manipulate materials, take notes and get around campus. The aide’s job is to help your child do their work, not do it for him/her. It’s likely your child will need his or her own aide, not one shared with others.
A service dog can help students with disabilities in a variety of ways.
One of your child’s aides may be of the canine variety. Service dogs can help your child in a variety of ways, from getting around, to picking up dropped pencils, to helping them develop friends at school. There are, however, some things even the best-trained service dog can’t do (like take notes or assist in the bathroom), so a human aide still may be necessary. When one school district told a 10-year-old student’s family that the student could have either a full-time aide or a service dog in the classroom — but not some combination of the two — the parents brought a professional dog trainer to the classroom. He explained the law on the use of service dogs and taught the teacher how to accommodate the dog, resolving the situation.
When conflicts arise with a school district, school personnel may be acting more out of ignorance and fear than anything else.
We who love our children learn over time to handle the special needs of day-to-day life. A teacher, school administrator — or even a school district — may have no experience like this at all and the idea of trying to fit your child’s needs into their already crowded schedule and classroom can be extremely daunting.
As you work cooperatively with the school personnel, you can develop positive relationships that will benefit your child this year and into the future.
By law, children with diabilities — whether physical, cognitive, emotional or behavioral — are entitled to a “free and appropriate education” in the least restrictive environment possible. An Individualized Education Program (IEP) is a document — created jointly by the school and the student’s parents or guardians — that contains a plan for the supports your child will receive so he or she can succeed in school.
In preparation for your child’s IEP meeting, the school district will have a multidisciplinary team of professionals observe and evaluate your child’s academic and developmental skills and status. You should prepare by talking with physicians and therapists who can describe the effect of your child’s strengths and weaknesses on his or her schooling.
The IEP meeting will include the school district team, you, your child (if desired) and any trusted advisers or experts you want to bring along, including therapists and other professionals familiar with your child and his/her condition. (If you plan to bring a lawyer, advise the team before the meeting so they can have their own lawyer present.) These meetings usually occur in a cordial, give-and-take atmosphere and can lead to helpful relationships with school personnel.
The school’s multidisciplinary team will present a tentative plan to help your child achieve measurable short-term and annual goals, and will propose supports to help your child achieve those goals. If you have questions that are not answered or concerns that are not addressed, you have a right to get those handled before signing the IEP. It does not become a binding document until you and the appropriate school personnel have signed it — so don’t sign it until you’re satisfied. Once it has been signed, the school district can be held accountable for providing what is needed to enable your child to meet the written goals.
Be careful when the IEP calls for an out-of-class service. For example, are you willing to have your child miss math three days a week to go to occupational or physical therapy? If not, state this in the IEP document. If possible, try to get extra services provided after the school day, so no academic time is sacrificed.
The progress your child is making on his or her IEP goals must be reviewed and updated no less than annually. You or the school district can call for an earlier review if your child’s needs suddenly change or if there are any problems in the implementation of the current plan.
For more detailed information, visit U.S. Department of Education OESP's Idea website. For a list of MDA publications and articles about IEPs (and 504 plans, which also provide for school accommodations), see Resource Roundup: IEP and 504 Plans, Quest, April-June 2012, or ask your local MDA office for a printout.
Donna Albrecht is a writer based in northern California. She gained personal experience with school accommodations thanks to her daughters Katie and Abby, who each had type 2 spinal muscular atrophy. Donna lives with her husband and their border collie.