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Parents must persistently advocate for their children with disabilities


Parents must persistently advocate for their children with disabilities
By JENNIFER LAZLO MIZRAHI
www.RespectAbility.org

As someone with a disability myself, and who also knows what it means to parent a child with multiple disabilities, I’ve become an advocate for my children on so many fronts, including their education.

After all, when it comes to disability and inclusion, despite good intentions, many schools don’t even know what they don’t know.

Also, only 61% of students with disabilities get a high school degree — so it is up to people with disabilities, and their loved ones, to educate and advocate for disability inclusion and success. This is especially true when enabling children with disabilities to have full access to education.

While today on average only 1-in-3 working age adults with a disability have a job, studies show that 70% of young people with disabilities can get jobs and careers. But we have to do our part. Here are some tips I’ve used in the past that may be helpful to you:

1. Know you are not alone. Fully 1-in-5 Americans has a disability. While parenting a child with differences feels lonely at times, seek out other families with similar experiences. Peers can offer good advice, and may become your new best friends. They reside in your local community and online.

2. Research which schools in your area have real experience and success working with children with disabilities. While all public schools are required to accommodate students with disabilities, some schools may have magnet programs specifically for your child’s educational needs. In other cases, you may want to resist when your school district wants to bus your child across town to a school for other kids with disabilities, when accommodations can be easily made at his or her neighborhood school.

  • Call your local disability groups to see what resources and leads they can offer. Ask other parents of children with disabilities about their experiences with different schools.
  • Go online to look at the school’s website. Does it say they welcome and serve people with disabilities?

3. Write an “all about how to succeed with my child” letter. Yes, you should also prepare a file with your child’s Individualize Education Plan (IEP), including suggestions for success from any speech, physical, occupational, mental health or other therapists that works with your child. But don’t expect all teachers to be knowledgeable enough to understand some of the technical material. Your letter should be easy to read.

Provide a toolkit for working with your child. Put things into simple language with bullets of information that the school needs to know to make your child’s experience safe and successful.

Remember, as a parent, you have unique insights about your child that can help your child’s teacher understand his/her strengths and needs. Your candor, experience and advice will be much appreciated. Depending on the age of your child, you may want your child to help write the memo.

4. Request a meeting with your child’s teacher and team.
Yes, everyone is busy. However, if you miss out on having a real substantive conversation, you may create a situation that turns your child off to school and learning.

Additionally, it is not enough to meet with the school principal. You need to sit face-to-face with teacher who will be in the classroom with your child, as well as the school leaders who support that teacher. If appropriate, bring your child’s therapists. Depending on the age of your child, you may want to bring them to this meeting.

Before the meeting, you should send your memo about your child to all the meeting participants. Bring copies of it to the meeting as well, and have your “elevator pitch” about your child ready to go. You may want to practice it in front of someone who can offer constructive criticism. It is important to get your points across quickly so they can ask questions. Teachers will really appreciate your efforts, resources and transparency.

Once the teachers learn about your child, the school may want to put an extra aid in the classroom to support your child’s needs. Alternatively, they may want to match your child with a different teacher who is more experienced. If so, do your “elevator pitch” and Q&A with that teacher as well. The school may benefit from having your child’s occupational or physical therapist meet with them, or join the class for a day, to give the teacher some tips.

5. Ask the teacher and team about their preferred method of communication. Mutual respect and trust are important to all relationships. This includes the relationship you want to cultivate with your child’s teacher. That’s why it’s important to find out which method of communication suits them the best. Many prefer emails.

6. Be fully transparent with your child’s team. If your child has tantrums, be sure the staff understands what causes the tantrums, and how to prevent them. If your child needs notification before a transition, or has a tic or expression that they use to indicate he or she is anxious, the team needs to know, so they can best serve your child. This is not the time to worry about privacy – you need to focus on safety and success.

7. Be upbeat. Teachers want proactive parents. A positive relationship with your child’s teacher will help your child feel good about school. Before you hit “send,” look over emails, making sure they’re respectful of the teacher’s time and also of their efforts to help your child. It’s great for you to ask questions and make suggestions as long as your message conveys your trust that the teacher is performing her job ethically, responsibly and to the best of their ability. You want to be their partner. Remember that a teacher is a person first. Send thank you notes, volunteer, let them know when your child really enjoyed a particular lesson, and try to be considerate of their schedule; teachers have families too.

8. Share your enthusiasm for learning with your child. Talk with your child about they will be learning during the year, and why it is important to you. Let your child know that you have confidence in their ability to master the content, and that you believe it will be a positive part of their life. Reinforce the natural progression of the learning process that occurs over the school year. Learning skills take time and repetition. Encourage your child to be patient, attentive, and positive.

9. Slow down and take the time to do it right. Transitions are often difficult for children with disabilities. There will be a few bumps in the road. Your child will have a successful year at school in spite of difficulties. As we move into the first few weeks of school, stay calm and positive. Remember to take care of yourself. Know your limitations, and don’t be afraid to ask for help. Make sure your child has enough sleep, plenty of time to get up, eat breakfast, and get to school.

10. Familiarize yourself with the other professionals. Make an effort to find out who it is in the school who can be a resource for you and your child. Learn their roles and how best to access their help if you need them. This can include the principal, cleaning and kitchen crew, front office personnel and others who may work with kids with disabilities on a daily basis.

11. Reinforce your child’s ability to cope. Give your child a few strategies to manage a difficult situation on his or her own, but encourage your child to tell you or the teacher if problems persist. Maintain open lines of communication with the school.

12. Help your child make at least one real friend there. Arrange play dates. Try to arrange get-togethers with some of your child’s classmates during the first weeks of school to help your child establish positive social relationships with peers. Go to holiday events with other children and help facilitate actual friendships for your child. Parents of other children both with and without disabilities who are friends with your child can become your new best friends as well.

13. Listen to Your Child’s Feelings. When your child shows any anxiety about going back to school, the worst thing you can do is brush it off with a “don’t worry about it” response. Listen and be responsive to your own child and empower them to advocate for themselves as well. Show them your love. Sometimes you need to take a little step back in order to move forward.

14. Enjoy their childhood. It goes way too fast!

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