Offering Support...

Aunt Kirsten and Julia when Julia was17 months old

Last week I was asked to speak to a local MOPS (Mothers Of Pre-Schoolers) group about offering support to families who have a special needs child. The leader of the group had gotten our name from the Easter Seals corporate office. Julia is a former ambassador for ES, and is still asked to do occasional events for them.

I was nervous, but comforted by the presence of my dearest friend, Kirsten, who attended with me to hold my cold and clammy hand...even if it was only in spirit! (A word here about our friends the King family. Kirsten is my best friend, and has been for almost 20 years. We have birthed our babies together, sewed together, worked through parenting issues together, laughed and cried together and supported each other through thick and thin. They are Uncle Tim and Aunt Kirsten to my kids, and we are Uncle Dave and Aunt Beth to theirs. Tim is a source of support that we would feel so lost without...they both are extremely aware of our older children and are always "filling their cups" with positive words and loving actions. The King children (Adam, Emily, Trevor, McKenzie and Noah) are like our own...and are our kids best friends. Without the Kings we wouldn't be the people we are!)

The response from the women at the meeting was overwhelming...many do know families with special needs kids, and want to reach out to them, but just aren't sure how. This got me to thinking, and I want to post some tips on offering support to families who have a member with special needs.

I can only speak from my own experiences, so these suggestions may not apply universally!

In our case, the kind of support we needed evolved over time. In the beginning, Kirsten held my hand through everything...doctor's appointments, the geneticist appointments, Alta (social worker), therapy, and educated herself in order to "spoon feed" me info about Cri du Chat Syndrome. I was so overwhelmed by the negative information we had received when Julia was born that she was four months old before I got online to research Cri du Chat Syndrome myself. Kirsten spent a lot of time learning about CDC and giving it to me in bite-sized chunks.

How can you support the families that you know?


Be open and available...approachable. Allow the family to express emotions without having to validate them...just listen!

If you are someone who is knowledgeable about special needs, don't assume that your insights will be welcomed at first. The family needs time to acclimate to the idea that their child is not typically developing. They do not want to be told that this is the best thing that ever happened to them, or that they will love all the new things they will learn. They will eventually come to this knowledge. Right now they need time to grieve the loss of the child they expected to have, and time to embrace their baby and his condition.

Realize that the parents are going to be very focused on the new dynamics of their family. They probably will forget things like birthdays, golf dates, and coffee dates. They are very absorbed in assimilating all the new information they have recieved, and deciding how to react to it. Don't be offended if the conversation is redirected to their situation often. It is what they are thinking about, and most likely, what they are talking about too.

Don't be afraid to ask about the child, how the family is doing, the doctors reports, etc...most families, especially moms WANT to talk about this new journey they are on.

Educate yourself about the disabled child's condition...but don't repeat to the family any negative information you may glean...they have already heard it from their professionals. Try to pull out the positive things. Kirsten was so good about this. She was always trying to find a positive way to look at Julia's diagnoses. Even when all the information we had was negative, she would put a positive spin on her words..."Children with CDC can have IQ's in the 30's, they can learn to walk and communicate, they can live an average life-span, etc.)

Encourage the parents to focus on what their child CAN do IN SPITE OF their disability...not on what they CAN'T do BECAUSE of it. 'Nuff said!

Learning about the child's condition also prevents the parent from having to explain things to you...they are explaining things to EVERYONE...be the exception!

Focus on the positive...no matter how negative the attitude of the parent. Don't be a "Sally-sunshine"...be sincere, but notice the beautiful blue of the baby's eyes, or the soft hair on the back of her neck. All children are beautiful! As Julia's pediatrician told me the day she was born: "God does not make everyone alike, and God makes no mistakes!" This is exactly what I needed to hear. Another comment that was made by one of Julia's professionals that completely changed the way I looked at Julia was made by her geneticist, Dr. Eswara. He told us that "Uncertainty is not a reason for fear. Uncertainty is a reason to hope." Ponder that for a while! It is amazing!

Many special needs children require huge amounts of hands-on time. Help with this. There are many ways to contribute. Ie: taking the child to therapy, working on therapy follow-up with the child in the home, doing household chores, laundry, or providing simple meals. One family brought us KFC the during the week after Julia was born. Another had pizza delivered to our house. It was wonderful not to have to think about what we were going to eat!) Most parents of special needs kids have in inordinate amount of guilt. They feel guilty about the amount of time their special child requires, and how much it takes away from their typically developing kids. Every moment they aren't serving their special needs kid, they feel guilty about not "redeeming the time." (Often we are given a "optimal development" time-frame...get as much progress in the first 3-5 years as you can, etc.)

"Fill gaps" with the siblings of the disabled child. Take them along to the library when you take your kids, to McDonald's for a Happy Meal and a romp in the play area, take a small treat to the typically developing child (game, book, puzzle, coloring book) and take time to enjoy it with that child. Kirsten helps us by taking Julia to therapy if there is an event for one of the older children that conflicts with Julia's schedule. She and her family also babysit so we can do things with our older children that Julia may not enjoy.

Provide older siblings with a "safe" place to express how they feel. My older children all love Julia, and most of them have stated that they want to have or adopt a special needs child when they grow up and have their own families. Three of my older kids want to become therapists, and postively impact the lives of people with special needs. But I can tell you that they didn't start out this way! They ran the gamut of emotions from anger to fear, and I am glad that Tim and Kirsten always have provided them with a safe, confidential sounding board for their emotions.

Help the family maintain normalcy as much as you can. Most families long for their disabled child to have "normal" experiences. Facilitate these...birthday parties, outings, family gatherings. Work to include the special needs child.

A very special Christmas tradition we have is going to look at Christmas lights with Tim, Kirsten and their children. Julia was born on December 10, and I can tell you that the last thing I wanted to do was look at lights that year. Kirsten knew, though that our family needed to maintain some semblence of normalcy. She called me and invited us to keep our traditional outing. I did not want to go and said so. Kirsten was sweet, but insistent. She pointed out to me that my older kids needed to look at lights. That Dave needed to look at lights. That, even though I didn't know it, I needed to look at lights. And that she would be there to pick us up at 6! It was not an easy thing to do...walk and smile and laugh like everything is "normal" but you know...it was just what we needed, and it is one of our few truly happy memories of the first few weeks of Julia's life.

Be sensitive to the child's/family's needs when they visit you. Julia has sensory issues, and needs frequent time-outs from too much noise or visual stimulation. I am thankful for friends who offer us a quiet place to go (a bedroom, or den) and regroup during a gathering. This enables us to take a break and come back and enjoy the festivities. If we aren't able to do this, then Julia's behaviors escalate into a full-blown meltdown and we have to go home.

Rejoice with the family! The Bible tells us to rejoice with them that do rejoice and weep with them that weep -Romans 12:15. The Kings (Tim and Kirsten and their children) have jumped up and down with us and done cartwheels over the smallest of accomplishments...like the first time Julia was able to isolate a finger. She did this by sticking it up her nose. We were still thrilled...after all, we had been working on this OT goal for months! Or the fact that one of Julia's first words was "Puh-puh" (Poo poo.) It didn't matter that she was talking about stinky body functions...we were excited that our non-verbal child was communicating verbally! As usual the Kings handclapped with us and praised, praised, praised Julia's efforts. And, just as Romans 12:15 admonishes, they have shed plenty of tears with us also.

BE THERE...even when you're not. What I mean by this is: be someone that the family feels they can call at any time for any reason. There were many, many times I did not call Tim and Kirsten. There were many, many times that I did not go by their house. But I drew great strength and comfort from the knowledge that I could if I wanted to. Believe me...there were plenty of times that I did!


Supporting families you don't know:

Everyone is different...it's a gamble! Be prepared to be rebuffed...but understand that the good you may do in offering support far supercedes the potential for any embarassment you may experience if the family is not "open" to you.

Don't be afraid to acknowledge a disabled child. The parents are already painfully aware of their child's challenges. They already feel like their child is being noticed. Acknowledge the child in a positive way. COMPLIMENT the child. If appropriate talk TO the child, not just ABOUT the child.

Be patient with responses. Some folks may be very open about their child, others may not be.

Teach your children that God creates everyone different and we are not all the same. Questions are ok...but ask them privately. Tell them to say kind things to or about the child. (Abraham Lincoln once said "If you look for the good in mankind you will surely find it." There's always something nice that can be said!) Kids are naturally curious...it's OK!!! Some of Julia's most ardent supporters are children we know at church. It is rare for a service to go by that Julia is not bombarded by children who want to talk to her, hug her, or help her use her walker. There is no way to measure the ways this has benefitted Julia! She loves those kids!

Encourage your children to reach out to kids that are different than they are, and to value them.

Support programs and fundraisers that benefit the disabled:
Easter Seals
Project R.I.D.E.
Special Olympics...and there are many more!

Learn a few baby signs...lots of disabled kids use sign language, and are thrilled when someone "speaks" their language!

Kindness NEVER comes amiss! Every parent wants to have nice things said to and about their child!