Finding Support When Coping with Your Child’s Learning Disability

When a child has a learning disability, ADHD, or Asperger Syndrome it affects the whole family. Parents and children deal with a host of feelings as they find their way to a diagnosis and proper services for their child. At first parents may be frustrated with a child who does not do as well in school as his aptitude would predict. Children with undiagnosed learning disabilities can have confusing academic performances. They might do quite well for elementary school and be utterly overwhelmed in middle school. They might do well in one subject but be stymied in another. When stymied, most children try to avoid the work. A parent might see this as laziness, sneakiness, or lying. Worse, there are times that well meaning but poorly informed school personnel tell parents that their children need to buckle down. Then there are arguments about homework and studying. You know the drill. These struggles affect siblings as well. I’ve talked to children who try to be “good” because they see that their parents have their hands full with another child.

In time a diagnosis is made either by the school or an outside evaluator. This can bring relief because now there is an explanation for the child’s academic and possibly social difficulties. But there may also be sadness. We all hope our children are just going through a phase, and they’ll grow out of it. Getting a diagnosis means your child learns differently and needs specialized services. I know parents who feel sad and ashamed that their child is “different”, and they worry about the future. Even though appropriate services can significantly improve a child’s school performance, parents and children may feel shame about needing the services.

Parents often compare how their children are doing with other people’s children. Like it or not, it’s pretty natural. When someone says, “How does Johnny like 6th grade?” you want to say, “It’s great”. But the truth might be, “It’s a nightmare for all of us”. What do you say at the soccer game? You might watch the neighbors taking their children to accelerated after school math and enrichment drama and wish that you could switch children. Yours has a tutor just to do the regular math. And then you feel ashamed for such a thought.

And then for many families there is the struggle with the school system to properly serve your child’s educational needs. While many schools offer excellent and appropriate services, it is still the parents’ responsibility to make sure their children are well served. Meetings with many professionals present are intimidating, especially when you feel vulnerable about your child with problems.

Parents need good supports as they raise and educate their children with learning disabilities, ADHD, and Asperger Syndrome. They need good information, professionals who can help them and their children, and other parents who have been there. I find that talking to other parents is extremely useful for the isolation and shame that parents often feel . Where can you find this support?

On the internet there are a wealth of useful websites. In my area I often recommend the website for the Aspergers Association of New England. (www.aane.org). AANE offers good information, and online support groups for parents. If you happen to live in New England you can also take advantage of face to face support groups and workshops on a variety of topics. Another very useful website is www.aspergersyndrome.org , OASIS@MAAP. This site also offers moderated discussions forums on a variety of topics as well as articles by experts in the field.
For people dealing with nonverbal learning disability, there is www.nldontheweb.org. This site has been around for many years, and it offers great information for parents. And like the other sites there is a very useful parents’ forum managed by knowledgeable parents.
A trusted source of information on attention deficit hyperactivity disorder is www.chadd.org. CHADD stands for Children and Adults with Attention Deficit Hyperactivity Disorder. Like the other sites this offers a wealth of information, online communities, and information about local support groups.

The Federation for Children with Special Needs is another excellent organization based in Boston. You can find them online at www.fcsn.org. This site offers articles about many different conditions that constitute special needs, including the ones I have discussed here. The Federation works to help parents support each other and offers support groups for parents as well. They also help parents find educational advocates to help them negotiate the sometimes difficult task of obtaining services for children.

In Massachusetts each school system is required by law to have a Parent Advisory Council or PAC. The membership is made up of all parents of children in special education in the school system. They are empowered to advise the school about the needs of children. And once a year the school system must conduct a workshop about the rights of children under the special education law. PACs can provide useful information and networking. It can be a very good place to find out other parents’ experience with programs in specific schools. And it is a place for parents to find support.

I know that on Twitter I see a great many parents of children with autism and ADHD. They are tweeting each other to share information and offer support.