Child with Down syndrom in school

If you have a child with special needs, you likely will spend his or her entire school-aged life developing plans as part of an individualized education program. The process is vital — and inevitably a source of stress.

6 Tips for parents of kids with special needs

IEPs are intended to develop attainable, measurable goals for a child with special needs — which sounds intimidating already, doesn't it? But what if you could ask other parents, educators and therapists to share the tips they wish all parents knew? Cross that off your list, because we've done your homework for you!

1

Set the tone with snacks and a smile

In your quest to learn all you can before The Big Meeting, step back for a moment and consider basic survival skills: Bring snacks!

"Parents should always bring refreshments," says Kathryn Lariviere, executive director of the Down Syndrome Association of Greater Charlotte (N.C.) and mom to a son with Down syndrome. "It sets the mood for a friendly meeting — even if it isn't always as friendly as you would like."

While casual snacks can sweeten the tone, information about your child should be served on a platter. Elizabeth recommends emailing your child's IEP team ahead of time "with a paragraph about your dreams and goals for your child, as well as a list of more specific suggestions, concerns and ideas." She has been "dealing with IEPs and IFSPs for almost 19 years now, with one visually impaired child, one child with severe apraxia of speech, one medically fragile child with [cerebral palsy], and [a son with Down syndrome]." Elizabeth reports "all are thriving in their current academic setting," which ranges from university to homeschooling to public school.

"A" is also for "attitude."

"Parents are the experts about their child," reminds Nancy Higginson, senior case coordinator, Children’s Developmental Service Agency of Mecklenburg County, North Carolina. "School staff are the experts about education. Both are mutually important to the process. Bring to the team what you want from them (e.g., respect, clear communication, positive attitude)."

2

Be organized and prepared

Organization is key, and a binder will help you keep track of drafts, notes, signed releases and resources.

"I have a binder I keep with every bit of info you could ever want in tabbed sections," shares Jill, mom of a child with Down syndrome, citing examples such as past individualized family service plans (IFSPs), IEPs, progress reports, evaluations, medical information and a section of important laws and guidelines.

Organization is one thing; a basic understanding of the process, the players and the plan is essential, parents advise. "Try to get a copy of the updated IEP before going into the meeting," advises Terri, whose daughter has Down syndrome. "That way, you are not blindsided by something the school is proposing. Having reviewed the copy prior to the meeting helps the meeting move along a little faster, too."

Spend some time before the meeting writing down your key requests or hopes for the final IEP.

"My biggest piece of advice is to go to the meeting knowing your priorities of what you want for your child from his/her upcoming school year," recommends Lennie Latham, Infant/Toddler Family Specialist (ITFS).

"For example, if it is your priority that your child receive a specific therapy (PT/OT/Speech), then don't back down if it isn't initially recommended by the team, and come prepared with examples of why your child needs this particular therapy to address his/her educational needs."

3

Don't ignore the big picture

"Too many parents come to the table with the focus on just the therapy services and not the outcomes," Higginson explains. "The IEP goals 'drive' the services and give reason for therapies to be placed on the IEP. There is also a belief that more has got to be better when jockeying for frequency of therapy services.

"Frequency of therapy services on an IEP does not equate to how many times your child will have the opportunity to practice new skills," Higginson points out. "Find out how the teacher and the therapist communicate and how present the therapists are in your child’s classroom," she recommends.

4

Advocate, advocate, advocate

"While [you] need to avoid the 'us vs. them' attitude, [you] also need to know the laws and be ready to advocate and/or give a strong nudge/demand for the child," recommends Paul, who has a daughter with Down syndrome.

"Be an educated team player and have an awareness of the process before it occurs," Higginson adds.

5

Understand “want” vs. “need”

"Keep it focused on what your child needs, not on what you want," emphasizes Lynne, whose son has 6p Deletion syndrome. "If you walk in saying, 'I want this, and I want that,' then the focus is off your child. If you say, 'He needs this because it will allow him to access his academic environment and help him thrive,' then the focus is on the child."

Speaking from experience, this advice helped my husband and me better prepare for our son's initial referral meeting. We reminded ourselves that the goal wasn't about what we wanted for Charlie, but about what he needed to continue to develop and meet goals.

6

Manage the team roster

You and your partner have studied, collated, baked and prepared. Ensuring the right people are in the room with you can make all the difference between success and more stress.

  • "Insist everyone be there. Every year I get asked if [someone] can be excused… Every year my answer is no. Politely but no," explains Christine, who has a son with autism.
  • Bring a life line! "Sometimes it gets emotional," admits Kristin, mom of a child with Down syndrome. "Take breaks, bringing a friend that has been there can help here too! Review the draft with your advocate or friend in advance."

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