I spend a lot of time writing about motherhood in an effort to empower and support my fellow moms. But somewhere along the way, the child with medical conditions and special needs is lost! Lost in the system, lost in the community, on the playground – just plain LOST – if he doesn’t have friends and kindred spirits. Sick children need support – special needs children need friends too!
I wrote an essay on the importance of finding your “Oasis” as a caregiver. For mothers of children with medical conditions and with special needs, it is imperative that we find (and cling on to) a strong support system. Whether we find our grounding forces at home, at work, or on-line doesn’t matter – as long as we have someone to lean on during the trying and tiring times. Great! – Now mom is supported and loved. She has kindred hearts to vent to and compare notes with – a place where she feels “normal”. Then begs the question, what about the child with medical conditions and special needs? Where is his community, his support – his “Oasis”?
I hear time and time again from parents with special needs children that it is so hard for the kids to find their “Oasis”. Just when they are finding their own identity, balancing the fine act of blending in and standing out all at the same time, the children with medical conditions are identified solely by their physical limitations or uniqueness – and not necessarily in a positive way.
[bctt tweet=”#SpecialNeeds children need friends too! Help your child find their #SupportSystem.”]
Thankfully we now have social media to connect people from far and wide with similar hobbies, interests and even those who share the same diagnosis. As the mother of a child with some medical conditions, I have found so much support on Facebook. I have made friends with people I have never met, but whom I rely on for support when times are tough. However, Facebook is not the appropriate platform for young children, and I know I am not alone in that opinion.
Help your special needs/ medically complex child find his “Oasis”:
- Support groups! Many local hospitals host support groups for various medical conditions. I ran a group for families affected by pediatric heart disease and defects for several years. I saw how friendships were formed and fostered there. However, in this social media driven time, it is really hard to get people off the couch, out of their homes and into a meeting room. Besides – the germs! Many of these children are immune compromised or medically frail – the last place they need to be is in a germ filled hospital for social reasons.
- Non-profit organizations for specific medical conditions! These organizations are another great way to create a sense of community around a particular medical condition. Many of the local organizations host events and social gatherings for their member families. We were never able to attend many of them due to the germ-exposure. But if your child is not under a restriction from public places, then these organizations are a wonderful way to meet your new “Oasis” and for your child to connect with other children.
- Your friends’ children! While you are able to enjoy the friendships formed within Facebook groups, you can introduce your child to your “medical mom” friend’s child. Perhaps they can connect via Skype, email or text messaging. Thankfully in this technology-driven age, you are not limited to in-person contact. Reach out to other mothers, ask for their permission to connect your children through a technology medium you are both comfortable with.
- Social workers and Child Life Specialists at the hospitals are a great resource as well for helping kids adjust to life outside of the hospital. I always recommend for families to reach out to the resources that are available to them. Due to privacy issues, doctors and other medical professionals won’t say “hey, so and so also has a son with this medical condition. The two kids should meet!” To navigate AROUND that issue, you can leave your contact information with the doctor and ask him to give it to any patients he has with the same diagnosis. I have done that on numerous occasions with great results.
I hope this list of ideas has helped you to think of new ways you can connect your child with his own “Oasis”. Remember, as much as you need a shoulder to cry on and an ear to fill with your concerns, so does your child. His needs may very well be different and manifest themselves as a tendency to withdraw or lash out.
It is my sincere hope that you and your child can find a common bond and perhaps connect with another family like yours.
You don’t want to miss my “Letter to the Mom Sitting Across from Me” (grab your tissues!)
Do you have a friend who continually pulls you through the tough times? Do you have an “Oasis“?