Telling your child about 22q11.2 Deletion Syndrome: One Family’s Experience
For months our son nagged us to tell our daughter she had the deletion. He felt like we were not being honest with her about her condition. As with many things in life, we felt that in time she would ask. Sure enough, that time came one evening after she had been home sick from school a few days. We were all at the dinner table when she asked, “Why do I have so many doctors?” I looked at my husband trying to read his expression. Was this the right time? Finally I said, “When you were born, you had a little piece missing.” “Where?” she asked, looking at her hands. “Inside. That’s why you take medicine,” I answered. “Well, where is the piece?” I hadn’t thought that through, so I looked at my husband. He quickly responded, “God kept it with Him.” She said, “Well, when I get to heaven, I’m going to tell him to give it back.” We all seemed satisfied with the conversation and continued with our meal. After dinner though, I cried in my husband’s arms realizing that not every parent will have that kind of conversation with their child. I guess I should just be relieved it went well.
by Dottie Specht
You need to be an all-in-one coordinator!
Be Proactive – You are the “Professional Parent”
Keep an on-going printed copy of your child’s history
Keep a Binder
Copy of Daily Life Schedule including all your children
A Running List of Doctors’ Appointments
I have been in countless individualized education program (IEP) meetings since my middle schooler first entered the school system as a tiny preschooler. While special education is intended to make school and learning accessible to all children, I quickly learned that the process itself is incredibly complex. So complex, in fact, that I used to joke that IEP stood for “in English, please” because the jargon and acronyms went ridiculously over my head.
Over the years, I’ve gradually learned how to navigate the land of IEP meetings for my child with special needs. Sure, I’d still rather go to my annual OB-GYN or dental appointment, but I’ve learned enough about my daughter’s rights to feel comfortable as her advocate.
It doesn’t matter if your child’s IEP is three pages or 100, walking into a room of already seated educational professionals, all of whom have a stack of papers with your last name on them and become quiet when you enter, is a bit like having the lights suddenly go out.
It’s surprisingly unsettling, even as a grown-up. Perhaps it’s the endless acronyms (OMG) and procedural formalities. No matter how prepared I felt in the past, I was unsure of the best way to navigate through it when I seemed to be the only one in the dark. Then, a few years ago, a light switch flipped on in my head: I am the one person in the IEP meeting who knows my child the best, and my voice is her voice. That made all the difference to me when thinking of what an IEP means, since it’s far more empowering to think of an IEP as “I’m an Expert Parent.”
While I have no business giving advice based on my professional background, as I’m not an attorney or a consultant, my hourly rate is simply me giving you my two cents worth as a mom who has decided that we are all experts. If you have a child with special needs, I hereby grant you permission to consider yourself a professional advocate with a masters in no nonsense. We don’t have time to figure out the meaning of each acronym, let alone what exactly schools providing free appropriate public education (FAPE) looks like for our children. But, as parents and participants in IEP meetings, we do need to understand the lay of the special education land.
My daughter has 22q11.2 deletion syndrome which means she qualifies for an IEP that should theoretically help her with everything under the sun. I would love to say our experience with special education has been seamless because when our daughter entered school, we already knew her challenges required additional support. But there is a universal truth to receiving individualized education for your child, no matter when their challenges are identified. You understand your child better than anyone, but when it comes down to knowing your rights and how to help your child succeed, the truth is that participating in an IEP meeting is overwhelming and like playing a game without having all the cards, or even the rules.
The school isn’t offering a menu of a la carte items that your child may or may not benefit from. They give you, well, what you ask for. It’s a Catch-22 for someone who has never navigated the far off lands of special education.
As my daughter’s annual IEP meeting approaches, the lessons I’ve learned about special education are foremost in my mind. Here is my two cents worth:
I realized I can request a meeting prior to the IEP meeting to discuss more in-depth concerns. Since there is no checklist of potential services for parents, don’t feel badly asking for time to brainstorm ideas or to extend the IEP meeting.
In my experience, the director of student services has been an incredibly knowledgeable ombudsman who has a much easier time seeing the big picture because he or she can add additional resources or aides. Fun fact: The director is also responsible for being compliant. When in doubt (or distress), I copy our director on my emails, and the response I get back from any team member is guaranteed to be professional and expeditious.
To me, the true heart of special education law and an IEP is embodied in this quote: “Fair isn’t everybody getting the same thing. Fair is everybody getting what they need in order to be successful.” Now, the next time you’re bracing for an IEP meeting, take a deep breath and remember the true meaning of special education: infinite educational possibilities.
For Parents or Caregivers
by Donna Cutler-Landsman, M.S.
Educating children with the 22q11.2 deletion syndrome is a challenging endeavor. The learning needs for this population can be very complex and usually require a very specialized approach. While there is wide variability in cognitive issues associated with the syndrome, most often student’s difficulties really impact learning in upper elementary school when the curriculum shifts to higher level thinking applications. The vast majority of students with 22q11.2 require special education services using carefully designed and targeted instruction.
Over the last several years, researchers have uncovered several areas of cognitive weaknesses in this population. This, in turn, has led to better understanding of the challenges your child may face and possible ways to remediate or accommodate his/her weaknesses. There is every reason to be optimistic about the long-term outcome. However, it is important for families to realize that learning can be difficult and that there is a real risk of children developing significant issues if their needs are misunderstood or left unmet. Have high, but realistic expectations of what can be accomplished. Successful programs require a positive working relationship between the school, the family and the medical community. In addition, it is important to understand that, even though learning may occur at a slower pace, most children will eventually progress to a level of independence that includes work, integration into the community and a meaningful and fulfilled adult life.
Making the Most of Your Child’s Educational Program
Early intervention is a key component in helping your child succeed in school. Once a diagnosis for 22q11.2 is made, contact your local school district to have your child evaluated for special education services. This can occur immediately after birth. There are programs to address the needs of very young and pre-school age children that will focus on building strong fine/gross motor skills and developing language. Children with this syndrome are at high risk for developmental delay, so parents and districts are encouraged to carefully monitor and assess whether developmental milestones are attained within a reasonable time frame. Early intervention can include speech, language, occupational, physical, behavioral, and cognitive therapies as necessary.
Children old enough to enter the public school system should be tested to see if there is a need for specialized services upon Kindergarten entrance. In the United States, children with this syndrome typically qualify for special education services under the Other Health Impaired category with Speech and Language as a secondary concern. Early ability to decode words (often a strength for this population) can sometimes mask an underlying and severe difficulty with comprehension. In addition, basic math concepts involving time, money and magnitude can be particularly challenging. Parents can assist in supplementing the school program with additional instruction at home in these areas. It is important to embed and reinforce these concepts as much as possible in everyday activities.
Once children enter middle and high school, it is vitally important to carefully plan a comprehensive transition program. Moving to the world of work and independence can be successful with the assistance of the school and community agencies. Most children with 22q11.2 will need some level of specialized support either in a job placement or in a post-secondary/college program. It is important that parents recognize this and put the necessary assistance in place well in advance. There can be wait lists and limited opportunities, so parents are strongly encouraged to begin the dialog with the school system at age 14 and to investigate government programs that might be appropriate for your child. In the United States, each state has their own graduation and diploma requirements, so it is important to fully understand the options that are available for your child and plan accordingly. Under the IDEA law, children with disabilities are entitled to special education public school support until age 22. Many young adults with 22q11.2 do need and should take advantage of programs that can assist them after the typical graduation age of 18.
Assisting your child through the educational process begins with you, educating yourself on your child’s rights, needs, and the resources available to them. There are several places available for support. Paramount is gathering the data/testing needed to understand your child’s strengths and weaknesses and then working with the school system to design a program that meets those needs. The 22q Foundation welcomes your questions and will try to assist you on this journey.
Don’t know where to start, when it comes to bringing your child’s teacher up to speed with 22q?
We’ve created a sample letter for the beginning of the school year for you to personalize and fill in the blanks. We hope this letter will serve as a way to start the conversation and give background information on 22q11.2 deletion or duplication syndrome. —
Remember to fill in the blanks with your child’s name. Add or subtract so that you can customize your personal message.
Understanding the Difference between IEPs and 504s
by Donna Cutler-Landsman, M.S.
Almost all students with the 22q11.2 deletion syndrome need some type of assistance in school to successfully move through the curriculum at an age appropriate level. Schools can offer additional help offering a myriad of services such as: differentiating the curriculum, re-teaching/pre-teaching, providing therapy services, allowing accommodations (such as extended time on tests), changing the mode of instruction (small versus large group), etc. Usually there is the need to enter some type of formalized agreement to determine what those services are, how they will be implemented and who is responsible for providing the assistance.
by Donna Cutler-Landsman, M.S.
Thank you for visiting the International 22q11.2 Foundation website to learn more about the learning and cognitive issues associated with this syndrome. The 22q11.2 deletion syndrome is very complex and the learning needs of this population can vary substantially from one student to the next. It is therefore extremely important to thoroughly assess these students and plan comprehensive programs to take all of their learning challenges into account.