An Interview with Bonnie Korman – Mom of Two Special Needs Kids
If you’ve done any research into special needs, you’ve probably been surprised by just how many different disorders and conditions can affect speech and language development. Like so many parents of special needs kids, Bonnie Korman and her husband Mark had never heard of Fragile X syndrome before their two boys were diagnosed with it. Fragile X can cause a wide range of symptoms, from communication issues to sensory overload. It’s also closely linked to autism. Today, Bonnie Korman is sharing her advice about parenting special needs kids and guiding them through the ins and outs of life. She’s also offered her tips on preparing kids for the back-to-school season, and notes that it’s important to customize your back-to-school preparation to your child’s unique needs. For more on Fragile X syndrome and the Korman Family’s story, head on over to Bonnie’s blog at The Fragile X Files.
SB: You’ve mentioned on your blog that the diagnosis of Fragile X was very difficult for you and your husband to cope with initially. What advice would you give to other parents who have just received this diagnosis?
BK: I think everyone copes with it differently. Some parents are already aware something serious is wrong with their child, so getting a definitive diagnosis is a relief to them. Some know about Fragile X before they get the diagnosis, so while it might still be very hard to get the diagnosis, it’s not as much of a shock. It was hard for us because we had never heard of Fragile X, and I personally still thought that it wasn’t anything serious or genetic or permanent – I still believed they’d catch up and be fine.
SB: The symptoms of Fragile X can vary widely from child to child. What does Fragile X mean for your boys, particularly in terms of speech and language development?
BK: Their speech and language development is very delayed, and they are cognitively delayed. I don’t necessarily think their receptive language is quite as delayed – meaning, I think they understand much more complex language than they can articulate. AJ speaks mostly in 2-or 3-word sentences, like a 2-or 3-year-old would, but he’s expressive and easy to understand. Zack has more trouble putting together 2-and 3-word sentences, and he has a tough time with oral motor skills – he’s a lot harder to understand. He gets pretty frustrated. Both boys have been receiving speech therapy in some capacity since they were 18 months old.
Both my boys are affected fairly typically by Fragile X; they have a great deal of anxiety, a lot of sensory disorder problems, intellectual disability, and autism (about 1/3 of people with Fragile X Syndrome also have autism).
SB: What were the IFSP and IEP processes like for your family? Has the school district generally been responsive to your sons’ needs?
BK: Our school district has been marvelous with our boys and really our whole family. The Early Childhood Special Education services were so helpful, because we really didn’t know what to do at all, when we first got the diagnosis. They taught me how overstimulation affects the boys, and the sensory brushing technique, and got me connected with county social services. And they have been just so great with the boys – they really love going to school, and I can feel good about putting them on that bus every morning. I know their teachers and therapists treat them well.
SB: Most of the school day, your sons are in a special ed classroom for children with autism. What types of speech therapy/occupational therapy techniques are helpful for them?
BK: Right now both boys are working on answering questions, like “What town do you live in?” and “What’s your favorite food?” They are also working on concepts like my turn/your turn, and over/under/behind/in front of placement of items. They need lots of time for sensory breaks, or they get overstimulated, so they spend time rolling and swinging and getting their wiggles out.
SB: You also have a daughter who does not have Fragile X, but is a carrier of the gene mutation. Has she ever had difficulty adjusting to life with special needs siblings?
BK: Well, she’s never known anything different. For the most part she deals with it very well. I’m constantly amazed at her level of understanding and empathy. She does have moments where she says she wishes her brothers were more like other people’s brothers, and wishes they could play with her more, but like I said, she’s never known them, or our family, to be any other way.
As far as being a carrier of the Fragile X gene is concerned, she knows she is a carrier but she doesn’t grasp what that will mean for her quite yet. We’ll tackle those issues when she gets older.
SB: Any tips for other parents of special needs kids for helping them adjust to back-to-school time?
BK: Talking about it is good, but too much talking about it can backfire. My boys need to know what is coming up, so we talked about school some, but not until just a few days before, and just a few times, because too much talking about it would have been stressful for them too. It’s important to know your child and know what he or she will respond to best.
Giving the teachers and therapists an outline of your child’s personality, likes and dislikes can help make the transition easier too. I try to give my boys’ teachers a one-page sheet telling about each of them, their strengths and where they need extra assistance. I try to keep it brief and make it memorable with bullet points, as I know they don’t have time to read a novel, nor would they remember it as well.
Back to School Tips for Families with Special Needs
By Bonnie Korman
1. Give the teachers and therapists an outline about your child. This is especially important if your child is nonverbal. Bullet points, just the things that stick out, and maybe just one page of memorable and important characteristics, strengths, and things he or she will need help with. It goes a long way toward helping the school staff feel like they know your child, and they’ll relate to him or her better.
2. Talk about it beforehand. Prepare and familiarize your child with what will be happening. Kids with autism deal with change much better if they know what to expect. They don’t like surprises.
3. At the same time, don’t talk about it too much. Some kids can get overwhelmed and have increased anxiety if too much preparation is done. There may be a fine line between just enough and too much. Know your child well enough to know where that line is.
4. Consider going in to talk to your child’s class about his or her disability. It’s important to make kids aware of the fact that kids with disabilities are first and foremost, kids. Point out the ways in which your child is like the other children, and identify what your child struggles with and why. Give them pointers on the best ways to interact with your child.
SB: School can definitely be particularly stressful for children with special needs like Fragile X syndrome. Easing the transition by helping your child’s classmates become better informed can help prevent negative interactions. It’s also important to balance your child’s school schedule with extracurricular activities and speech therapy lessons. Children with Fragile X are prone to sensory stimulation. Bite-sized speech therapy lessons at home can help, such as using Speech Buddies for articulation.
Thanks so much, Bonnie, for sharing your family’s story and your advice for other parents with special needs kids!