How Can I Support My Friends With Special Needs Kids? Do's and Dont's

As the mom of a four-year old girl who is physically disabled, I get asked a lot of questions about special needs kids.  People want to do the right thing, and most people are well-meaning.  So over time I’ve put together a kind of mental list of Do’s and Dont's.  The usual caveats apply --  I’m just one mom, and everyone has their own feelings and own style.

The question I get asked the most is usually something like “How can I support my friend who has a special needs child?”  Sometimes that friend has a newborn and has received a stunning and unexpected diagnosis.  Other times there is an older child for whom there are worries and fears in some physical or behavioral realm.  There can be a profound disability or a sense that something’s just not quite right.

Do’s

• Celebrate the birth like any other birth, and approach the child like any other child.  Send cards, clothing, strollers, baby wraps, baby plates, age-appropriate toys and birthday presents, and just about anything else you would buy to meet a new baby or a child’s needs.  Acknowledge the birth and the child; use the child’s name.  Ask to visit him/her like you would any child; if there are restrictions on the baby or child’s activities the parents will let you know.

• Drop off meals for the family; offer to babysit for older children.  There are a tremendous number of appointments and transportation arrangements involved with special needs children.  Early Intervention, physical therapy, neurologists, geneticists, speech therapy, developmental pediatricians, occupational therapists…these are just a few of the specialists a special needs child may see while under the age of 2.  It’s almost impossible to keep up with all these appointments and get hot meals on the table and manage other kids.  Family life may fall apart temporarily.

• Let the mom and dad process their feelings of grief and anger.  Depression and negative feelings do not mean they do not love and adore their child fiercely.  David Cameron, the British Prime Minister described this process with his severely disabled child, Ivan “You mourn the difference between the child you thought you were going to have and the reality [and eventually] you realize that you have a wonderful child.”  I love this, because it so closely describes my experience with my own daughter.  Of course, everyone deals in their own way.

• If you want to give gifts that support the special needs parenting process, or you want to read up yourself, a couple of books that I have personally found helpful are:  You Will Dream New Dreams by Stanley Klein and Kim Schive, and My Baby Rides the Short Bus by Yantra Bertelli, Jennifer Silverman and Sarah Talbot.  They reflect the process that special needs parents go through, and also have great humor.  

• Continue to include this family and the child in family-style events and age-appropriate events like children’s birthday parties, swim parties, etc.  Assume that the parents are the best judge of the child’s capabilities and have experience at tailoring fun to their child’s capacities.

• Assume that, unless told otherwise, the special needs child is on track to do, and interested in, most if not all of the same things your kid is interested in – from bike-riding, playing with toys, dolls, and computers, to starting preschool, reading, and eventually going to college and/or having a career.  Even children with severe limitations are invested in and proud of their interests and the things they can do.

Don’ts

• Don’t gush or excessively compliment.  Special needs parents can smell phoniness a mile away.  We don’t need to hear for the millionth time how special our child’s smile is and how bright his/her eyes.

• Icky-sticky clichés like the child is a “blessing” or an “inspiration” or “Special parents for special children,” “God doesn’t give you more than you can handle;”  “God chose you for a reason” or “God has a very special plan for --- (child’s name)” really aren’t helpful.  They may help YOU make sense of the world, and cheer YOU up, but to us they tend to be tiresome and irrelevant.  Similarly, most special needs parents don’t find the “Trip to Holland” yarn and “Footsteps in the Sand” very illuminating, and we’ve heard them before, thanks.

• Don’t tell a special needs mom or dad “I couldn’t do it,” or “I don’t know how you do it.”  First of all, you could and you would do it.  What is the alternative – leaving your precious child by the side of the road?  This is also a very isolating statement for a special needs parent to hear, as if you are drawing a line separating yourself from the special needs parent.

• Try to avoid medical inquiries, requests for the child’s diagnosis and prognosis, and anecdotes about miracle cures.  Many special needs kids have no clear diagnosis and for many their prognosis is entirely unknown.  If the parents want to talk about it, they’ll tell you.  Similarly, questions like “Is he walking yet?” or “Is she over her delays?” are really anxiety-provoking.  If the child has a major breakthrough in either skills or diagnosis, we will be the first to shout it from the rooftops!  And I’m really glad that diet worked for your cousin’s friend, but I’m not trying it.

• Other not so great things I’ve heard that I recommend you avoid:  “They’re cute when they’re young, but then they grow up.”  (As opposed to other children, who stay little and cute forever?)  “I was only willing to bring a child into the world if that child could take care of itself” (Oh, so your child is completely self-sufficient?)  “I had an amnio to insure that I wouldn’t have a child with birth defects” (Really? So did I!”) 

• Avoid generalizations like kids with Down Syndrome are loving and want to be hugged or kids with autism are anti-social and withdrawn.  Don’t assume that a special needs child is anything other than a unique, whole, thriving, child with his or her own interests, hobbies, activities and his or her own distinctive personality.  My daughter is still learning to walk and talk – she has cerebral palsy – but currently loves babies, is dying for a little brother, wants to be Dora for Halloween, can’t wait for school to start, and this month is planning to be either a librarian, a scientist, or a firefighter when she grows up. 

Well, these are MY thoughts and experiences.  I hope that other special needs moms and dads will chime in and that everyone will also feel free to ask questions.  I’ll be glad to share what I know.