So – your child has received an IFSP (individualized family service plan) or the IEP (individualized education plan). They are now going to start receiving services. You receive copies of reports and now have to absorb in black and white what your child’s difficulties entail. These are very hard for a parent to read. Maybe you need some support in understanding the disability, learning how to help your child. Does this sound familiar? This is now your life and your child’s life. You have to look the problem right in the face, just as the people in the picture above are doing to something that is unknown to us, but in the distance. You are not sure really what it is but as the figure moves closer, a new reality takes place for you and your child.
Good news is that those who work with infants, toddlers, older children and adults with disabilities or learning differences can act as invaluable supports. They can help advocate for your child and aid you as a parent in understanding the nature of the problems with which he or she lives. Professionals can help you learn how to teach your child about compensating for the difficulty that they have so that they develop into functional and safe adults.
There is an important key here – we are talking about your CHILD. Parents do a disservice to your child if this is not something that is not openly discuss at home, from the time that your child is young. You may readthis and wonder how in the world do you talk to a child about the problem that they have and at what age?.
Preschool aged children with disabilities are in classrooms with typically developing classmates, depending on the severity of the problem. At younger and younger ages children are consequently becoming aware of differences in others. This concept mayy already be discussed at school before you have gotten around to it. Your child deserves to hear about their personal situation from their parent or other primary caregiver first. So – here are a few jumping off points for you.
With a child as young as preschool age, you might start very simply at pointing out things that a child may see around him or her. Perhaps you pass by a person who is blind and walks with a seeing eye dog. Talk about what the dog does. A family member wears glasses, a person is in a wheelchair, the universal symbol for handicap accessibility. Discuss theese situations.
Your child’s teacher, school director, religious leader and/or the pediatrician might able to guide you in recommending books that describe the disability specific to your child. They may also know about books that describe children in general, who may have disabilities or difficulties in learning.
Television shows such as “Dora the Explorer“, “SpongeBob Square Pants“, “Little Bear” and “Sesame Street” have episodes in which the children have disabilities. You may choose to watch these shows with your child and discuss this if the situation presents itself.
Talking to your child, especially as they are young adults of what they have to do to keep themselves safe. For example, if they take medication then perhaps they should not be drinking alcohol. If they have a physical disability and want to drive a car, they may need to be guided in terms of adapting the vehicle. Again – be guided by professionals treating your child for especial significant points to discuss with them.
Part of maturing as a person is understanding who we are. If we do not truly do so, then how can we take care of ourselves as we grow. Consider this true story. A young man who lives with ADHD at his Bar Mitzvah (a right of passage into adulthood; typically at the age of thirteen, within the Jewish religion) prepared a discussion about the Torah portion for that week. He presented it to his family and friends. The discussion was striking. The young man said that he thought that the Biblical character, Moses, had difficulty controlling his anger and had an impulsive side to him. He illustrated that within the Torah reading for that week. Further, he related this to himself. He was able to openly discuss his own disability, having recognized it in someone else.
The next day, the same teen-ager left for school and by the end of a year demonstrated some ability to calm himself down in moments of anger more efficiently so that he was not physically hurting other people. In this particular case, it is an ongoing process – but his awareness of the problem is ultimately what is enabling him to compensate for it. He has taken ownership for this particular aspect of his personality.
Resources are out there to help parents as well as adults. Here is a sample of a few that might be meaningful for others reading this post but you can generally find this information by just typing into a search bar the name of the disability, illness, problem and information for parents, children and adults generally are found.
Sensory Processing Disorder Foundation www.sinetwork.org
Autism Society of America www.autim-society.org
Stuttering Foundation: tips for parents www.stutteringhelp.org
American Speech-Language Hearing Association: www.asha.org has a link for “self-help groups for speech-language and swallowing disorders” and “resources” which links you to ways to help a child or adult understand a hearing disorder
American Psychiatric Association www.ParentsMed.Org provides resources about medication for children as well as adults
Epilepsy Foundation www.epilepsyfoundation.org
If you go into either www.pbsparents.org or www.nick.com and type in a search for information, programming related to children with disabilities a number of resources are loaded and provide assistance for both parents and caregivers.
If anyone reading this has more information that they think would be useful for others, please comment so that others can benefit. Thanks.