Education
The most common manifestation of chromosome 22 disorders is developmental delay. The human brain is a very complex organ and chromosome differences do not seem to mix well with normal brain development. As a result, you will want to do whatever you can to assist or enhance your child’s brain and physical development as much as possible so that your child can grow into the best person they can be.
Early Intervention
Early Intervention is a term used to describe services and supports for infants and young children with developmental delays and disabilities. Examples of services include speech therapy, feeding therapy, physical therapy and even play therapy. These services are offered in the US free of cost or at reduced cost. In Canada each province has its own department of education and a list is provided in the links below.
In the US, children under the age of 3 can be enrolled in their state’s early intervention program either through a doctor’s referral or directly by a parent. Contact your state program through the Department of Health and Human services, state that you have a concern and that you would like to have your child evaluated to see if they are eligible for early intervention services. Note that you do not have to be able to voice a specific concern to warrant the evaluation, but you could state that your child has a chromosome diagnosis that is known to cause developmental delay.
If your child is over age 3 in the US, you would contact any local public elementary school and ask to have your child evaluated for preschool special education services. If the person answering the phone does not know of their program, ask to speak with the school’s district special education director.
It should be noted that there are often long waiting lists for these programs so do not delay or take a “wait and see” attitude. Acting early and getting the services your need in a timely manner can make a huge difference in your child’s developmental outcome. But there are also things that can be done while you are waiting. Check out the links below for milestone trackers, positive parenting tip sheets, creative play and other developmentally appropriate ideas.
Public School
Public School. Every child has a right to an education. Your child will attend school (or home school if you should choose) and there are certain processes in place to ensure that your child will receive the services they need in a safe and appropriate environment. Generally, this process begins with an evaluation. If your child received early intervention services, this can be relatively seamless. If your child did not receive early intervention, you can request an evaluation when your child is screened for kindergarten. You will want to make the school aware of the diagnosis and explain that developmental delay is often associated with the diagnosis. The school will need to contact your child’s doctor for additional information as the assessment process is extensive.
After the assessments are completed, a team, which includes the parents, is assembled to determine your child’s Individual Education Plan (IEP) also known as Individual Service Plan (ISP). This is a legal document that will govern what and how your child will learn over the next year. The IEP document lists the plan goals, how they will be met and how progress will be measured. It can be amended at any time by calling another meeting and any member of the team (including the parent) can request a meeting. The plan also determines the setting for your child’s education which can range from a regular classroom with supports to a self-contained special education classroom or even a home setting if your child has severe medical issues that cannot be safely maintained in the school setting. The IEP process is repeated year after year as your child progresses to develop new goals at least annually and follows your child through elementary, middle and high school. Plans vary greatly between school districts across the country, but the basic process remains the same.
Check out the links below for more information about special education services in the US and Canada.
https://cdc.gov/ncbddd/actearly
