Do you feel isolated as a special needs family? I know there are plenty of times I do. Our family is different, and our dynamics are different. My friend Erin wrote this post and it resonated so much with me that I asked her if I could share it here.
Erin’s family consists of 2 biological boys, a little girl with cerebral palsy adopted from Ukraine (besides her CP, she also has a diagnosis of microcephaly, some cognitive delays, and falls in the autism spectrum, she also happens to be my daughter’s best friend from the orphanage) and a little girl with Down syndrome adopted from Bulgaria.
“We’d love for you all to come over for dinner! The kids can all play in the basement while we visit!”
“Would you like to meet us at the park?”
“You are invited to my child’s birthday party! It is at 6:00pm. She’ll have a blast!”
I’m sure you have had those invites. I’ve had them and accepted them with great joy over and over again in my 13 years of parenting. I love fun! I enjoy fellowship with others. I like time with my friends to laugh and have fun.
Now let me tell you why each of those scenario’s doesn’t work for our family anymore. My girls absolutely can not be left alone in another person’s house. Oksana can manage OK in some houses but she still gets into things she shouldn’t, knocks things over because of her balance issues, and trips over things, often hurting herself and/or the children around her. I don’t leave Anya unattended in my own house where I have it appropriately childproofed for a 5 year old with DS. There is no way at all I can leave her unattended in someone else’s house. I learned from experience that Larry and I have no fun at all in these situations and we leave far more frustrated than refreshed. Oh and don’t forget that now Anya is totally overstimulated and will give us negative behaviors for a couple of hours following our “fun” get together.
Birthday parties? Certainly every kid loves a birthday party. We now have to say no to every single evening birthday party invitation. Trust me, we tried it, and every single one ended in disaster. Oksana needs her sleep and when we keep her up late and then at the same time totally and completely overstimulate her it ends in a major melt down.
I don’t say this to complain. I love my life. There is nothing I have ever wanted more than to parent all 4 of my children regardless of their abilities or impact on my social life. I say this to help others understand, and to say that living with a family like this puts us at great risk of isolation. I am involved in a number of online communities and this is a theme I see come up over and over again. Families are isolated. They are lonely. People don’t understand them. I can relate….and I’m not sure what to do about it.
One solution is to have people to our house. That is certainly an option. Can I be honest about this? It takes a great deal of intention for me to do this. I know full well that while having people over is the best route for our girls, it is also the hardest route for me. Now I need to clean my house (I’m sorry if you think that is crazy but I can not comfortably have people over when they have to make a path to get through my living room), I need to consider what I will feed them (did you know I hate cooking?), and I need to give them the speech about what to do if one of my children tries to hug them, sit in their lap, etc. Then I have to give Oksana the lecture about giving people personal space, not using them to lean on, etc. Can you see why I’m not on the phone inviting people over every weekend?
We do have other options. One is that Clayton is 13 and since the girls go to bed so early we can put them to bed and then meet up with people. I’m not saying we are out of options, simply trying to show that living with kids with special needs can easily put you on a slippery slope to isolation. Does anyone else feel themselves slipping away?