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Home Family Parenting Advice Appropriate expectations for a child with special needs — Good Parenting

Appropriate expectations for a child with special needs — Good Parenting

Meltdown preschoolerDear Dr. Debbie,

How do we deal with expectations from others that our son should be behaving like other 3-year-olds?
He was born with some physical challenges and, we’re discovering, intellectual delays. He is just now getting steady on his feet, and with the help of sign language, is able to communicate some of his needs to immediate family members.

Mealtimes are slow and messy. Playtime is very much self-centered — he’ll do make-believe if we use familiar props and keep to a script. Our two other children have found a few fun ways to interact with him including variations of peek-a-boo. We typically have about three meltdowns per day, so outings with him tend to be short and infrequent.

I’m dreading a large family picnic that is looming on the horizon. I don’t want him to feel left out of things, but on the other hand, I don’t expect him to be included in the way my other children were at his age. I also hope to avoid intrusive questions and anything that would provoke a meltdown from him.

Third Time Around But Different Track

Don’t miss last week’s column When the oldest thinks she’s the parent — Good Parenting

Dear Third Time,

The individual needs and abilities of each child are often best known by his closest caregivers. You’ve seen your son’s development since the beginning and have the frame of reference of at least two other children to compare it to. Just as the parenting of typically developing children can have its ups, downs and unexpected twists, the journey of raising a child with special needs can bring out strengths you didn’t know you had.

You are gaining insight and skills daily just as your son is developing to the best of his abilities on his own timetable. His mobility and communication skills are as triumphant as any child’s. If you have had the support of early childhood special educators, therapists and other professionals, their expertise regarding developmental expectations for your son adds to your appreciation and wisdom. Hopefully, you have also found an invaluable network of support that can only come from other parents who are on a similar track as your family.

As for those unenlightened adults and children at your upcoming gathering, they will benefit from your family’s lead in interacting with your special child. Although the calendar says he has reached the age of 3, he may not do well for very long at a family party, especially if he loses sight of you. The ability to separate from a parent gets easier for a child who can speak for himself in your absence. Toileting and self-feeding also rely on skills he may not yet have acquired, so sitting at a “children’s table” may be out of the question for an unknown period of time.

Give the host some suggestions for seating and foods, and offer to bring your own. I am assuming your family has picnicked before and can pack the essentials that will help you to help him be part of this event. For example, a bib and baby wipes come out as a matter of course. If he is interested in the other children, suggest ways they can “play with” him that respect his self-centered nature. Rolling a ball back and forth can be a pleasant way for him to be with people he is not yet familiar. Or just hold him securely on your lap to watch the other children play. Help others recognize when your son has had enough and steer the action away, or carry him away, before he gets overloaded.

Time your arrival and departure to best suit his needs, alerting the host to save you a lengthy explanation or apology. A good host will graciously accept this and speak on your behalf to the others. You can also communicate to anyone you think needs to know what time you will arrive and how long you expect to stay, so you don’t feel forced to overstay your son’s allotment for behaving well away from home. Those with whom you’d like to spend more time can certainly make plans for a more private and less stressful visit.

One of the challenges faced by parents of a child with special needs is the barrage of inexperienced advice, or worse, criticism of your parenting choices that well-meaning family and friends, and perfect strangers, feel free to offer. It can be emotionally draining to address the ignorance of the uninformed. Someone who hasn’t walked in your shoes may only be focused on what your son can’t do and what you are doing wrong. Some may be quieted with a diagnosis label — this qualifies your actions within a body of knowledge related to your son’s particular symptoms and abilities. Or you might casually mention a teacher, doctor, speech or physical therapist, seminar or reference book in relation to your son’s abilities and your perfectly appropriate corresponding parenting tactics.

Unless this meddler’s expertise happens to surpass the professionals on your son’s team, this may give them the clue that they clearly don’t have one. A quick education on the subject of your son’s particular special needs can make what he and you are doing suddenly sound perfectly logical. For example, his siblings and parents understand his sign language so he sticks close to the people with whom he can communicate.

Everyone has different abilities. You may be pleasantly surprised to find members of your extended family who are pretty good at seeing the needs of your special family.

Dr. Debbie

Deborah Wood is a child development specialist in Annapolis. She holds a doctorate in Human Development from the University of Maryland at College Park and is founding director of the Chesapeake Children’s Museum. Long time fans and new readers can find many of her “Understanding Children” columns archived on the Chesapeake Family Magazine website. You can find her online at drdebbiewood.com.

What do you think? Leave your thoughts in the comments or submit a question to Dr. Debbie at Betsy@jecoannapolis.com

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