“I have lost friends since finding out my child had….” “I feel alone.” “I feel like there are topics I can’t talk about with my family/friends.”
“No, you haven’t lost friends. You just haven’t kept up your side of the friendship” “My kid has tantrums too.” “You need to grow thicker skin, get over it!”
“I can only open up to my safe friends and relatives, the rest I paste a smile on my face and pretend.” “I can talk at the co-op but not at church.”
“All you want to talk about is your child’s condition and I just can’t handle that.” “Too much drama.”
Have you said or heard any of these things? Many times through the years my friends with child(ren) with special needs or myself have felt like we were separated by an invisible barrier. Many times I have gently asked why of people who moved away from us and the same refrain comes through, they are uncomfortable, uneducated, and not willing to put any more energy into the relationship then I can, so our friendships falter. Eventually these withered friendships litter the path of our journey and we have fewer opportunities to make more friends leaving us feeling separated and alone.
I asked on my support pages and groups if parents of special needs child felt disconnected with others. There was a resounding YES. Even worse out of the close to 100 responses I had 1 that felt her friends, church, and relatives had truly circled the wagons and were supporting this person 100%. I am thrilled for that 1 but how terribly sad for the 99 and the many many more that didn’t speak up. We are walking a different path. One that has pot holes, uncertainty, thorns and briars to snarl us and keep us in place for months or years of working through the same problems. A future that might not include a college, wedding, grandbabies, or even the teen years for some.
The more I looked into this situation through the many eyes of friends and readers I realized that there were few bad guys to this situation instead there was a HUGE communication, education gap that handicapped both sides.
I am actually going to dedicate several posts to this issue. Today I am going to show an interesting way to look at this problem with an analogy (thanks to a friend).
BASEBALL
Casual Audience: Those people that show up to see a baseball game once a year or catch a game on tv occasionally. They know most of the rules of the game. Cheer when happy and winning. Really don’t care much when their team is losing. There is very little of their time, energy, or life into the game of baseball.
These are the people that have a passing idea of special needs. Their history will color how they approach you whether good or bad. They can be open to education. These people can also make comments that have no basis in experience. “A good spanking will straighten up that kid!” or “His cousin can’t read either you are getting too upset.” totally ignoring the 4 year difference in ages. I find that this is most of the people you will run into. They have no hands on knowledge of special needs but they have seen a commercial from Autism Speaks, or a Medical Detective special on a disease close to what your child has. I like to think they are trying, they just don’t have the tools. I educate as much as they want to be educated and then ignore the comments that are out of line or frustrating.
Die Hard Audience: This is a tough crowd. These are hard core season ticket owners. When the team goes on the road they watch them on tv or follow. They know the names of the main players. Some even know stats and can talk your ear off about baseball. One fatal flaw is they watch from the sidelines. This group is not actually playing the game, but they have invested time and energy into the game. It can be extremely personal.
These people may have second hand knowledge of special needs. They may have driven a school bus for special needs kids….and I know…..such and such therapy or medication is a wonder drug. Or a grandma of a child with autism who is the wonderful Sunday school worker you were praying for. Perhaps a person that reads a book about how this family used vitamins, and dietary measures to treat their neuromuscular disorder. This is the group that can be the hardest to deal with. They are invested and they do want to help. Their help may or may not be clear and accurate to your specific situation. These are the arm chair quarterbacks, for the good and bad.
Casual Players: The seasonal players that have other jobs. They are playing baseball but as a hobby more than anything else.
These are families dealing with special needs issues. Their issues are less severe and not as noticeable to outsiders. Don’t think their special needs are any less. This is not a game of who is the sickest. We each deal with the unique needs and strengths we have. Being a casual player can be hard. You can be ignored by the audience (friends and relatives) as not REALLY having a problem. Also the special needs community can ‘look down’ at a family that has special needs. I have heard “but it’s ONLY dyslexia” That is not helpful. The person dealing with dyslexia has their entire life disrupted and can get the best therapy out there and still have life long adjustments and needs.
Professional Players: These are hard core players. They work out and devote huge amounts of time, energy, and money into baseball. You see them and your know they are high level athletes. Their life in season and out of season is all designed around baseball. On the down side they can not get away from baseball. They are recognized and have to deal with it in every life situation. This also removes them from the general population.
These are parents of kids that are facing serious, life altering, life shortening problems. These children have chronic illnesses like asthma, diabetes, cancer, or Celiac disease. They have a in depth everyday, every hour of the day knowledge of special needs. Often their entire life is wrapped up in care of their child. They are the most removed group of parents. They don’t have the energy to put into outside relationships, and friendships.
When your entire life schedule is based around chemo and recovery from it’s side effects. You are restricted by mobility issues. Diabetes sugar checking and care is second nature.
You have more specialist cell numbers on your phone, then friends. You know where to get the best magazines in your local hospital waiting room. When you walk through the grocery store you stop and chat with the EMT that comes to your home more then your parents.
Many dollop pity on these families for some of these issues. No, thank you. I appreciate your caring and help, especially when stretched thin. This group can be so disconnected because others make assumptions about what they can handle or their time available. Don’t assume we can’t or don’t want to help with a church project like Operation Christmas Child. Maybe that is mom’s way to get out of the house and do something good for the world.
This is also the group that will keep a smile plastered on their face and say everything is good when it isn’t. I understand the urge to keep things quiet, but how can you hope to get some help if you don’t ask? Just like others should not assume things about your time you should not assume things about whether or not friends and family will help.
The Haters: This is a very slim section of people out there but there are haters. Those that just absolutely do not like to even talk about baseball. They think it’s a waste of time and energy.
The first hater I ever met thought it was a good thing my daughter was a stillborn, because she had such a large birth defect. “It’s better for everyone.” No, it was not a good thing and I would have done anything to have even one day with my daughter. Haters in won’t acknowledge that special needs could be a good thing. Some even will blantantly disregard any type of special needs occurs. They may even turn the issue back on you and say it’s your fault as parent that your child has an issue. You sinned, you did something like drink too much coffee, you are just a bad person that is getting what you deserve. I have found nothing helpful in talking to these people. They have a serious issue in themselves and this is NOT YOUR problem. Remove yourself and your child from their influence.
**I remember every hater I have met though the years, I pray for them often.**
There is room on both sides to come together. The key for many friendships is understanding, education, time, and energy. If those dealing with special needs could try to educate when possible, ignore as needed, and pull together rather than try to point out who is in the worst situation. For those that aren’t dealing with special needs please have compassion, acknowledge that the parents have the best idea of what is happening and how to deal with it, and take that extra step out to your friend. Showing up with lunch for an afternoon chat is the soothing salve many hearts need when they are rubbed so raw constantly by medical needs.