Do you parent kids with disabilities and feel isolated as a 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 two biological boys, a little girl with cerebral palsy and other disabilities adopted from Ukraine (she was my daughter’s best friend at 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 cannot 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 Down syndrome, so there is no way I can leave her unattended in someone else’s house. I learned from experience that Larry and I have no fun in these situations and we leave far more frustrated than refreshed. Oh, and don’t forget that Anya becomes overstimulated and we see behaviors for a couple of hours following our “fun” get together.
So what about the park? Well let me tell you about that. I once went to a park outing with a bunch of homeschool moms. I was so excited for the chance to visit with these women. What happened is that they sat together under a pavilion and talked while their kids played. I ended up on the playground with their kids because Oksana cannot navigate the equipment alone. Now that I have Anya, parks will not be happening at all without Larry. Anya could easily end up in the parking lot, or sitting on a stranger’s lap, while I am taking the 20 minutes necessary to help Oksana maneuver the slide while a gaggle of children wait behind her.
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 staying up late while simultaneously dealing with overstimulation ends in a meltdown.
I don’t say this to complain. I love my life. There is nothing I have ever wanted more than to parent all four 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 not necessary 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 disabilities can easily put you on a slippery slope to isolation. Does anyone else feel themselves slipping away?
I can really relate to this – especially the nightmare that is the park!
Do you have information on Smith Magenis Syndrome?
I am not familiar with it, sorry. Hope you find some information.
Amen!
Definately isolated with our low functioning Autistic. Pretty much we are on the outside loking in.
It is so good to know that I am not alone! I wrote that back in January and this is still a frequent discussion in our house. We are really trying to be proactive in our relationships with people but it has not been easy. “On the outside looking in”…..I understand.
I loved reading your post. I have 4 kids ages 4-13, I have 3 boys and my youngest, my only daughter, Juliana has DS. I can totally relate with this and luckily most people that we know understand and embrace Juliana; however it’s still hard. What has happened over the last few years is that we’ve become a more introverted family if that makes sense. I’m also blessed that my older kids especially my 11 year old loves to play with his sister. Sometimes I feel “guilty” that I rely so much on my older ones to help with their sister. I do wish I had a circle of friends that had a child with special needs that we were close to, but in the area we’re in, that has not happened. I guess my point is that even though I would not change this journey, it can be a lonely one at times.
This is so much like what we are experiencing. We have three adopted children from foster care. They are not diagnosed with any special needs. However, They are very special needs. The impact of loss and abandonment and neglect took its toll on these boys and now doing normal activities is next to impossible. They respond exactly like the children described in the post when expected to play unattended or when they are over stimulated.It is especially hard when people cant see a special need but I know from experience that it is there. We feel very isolated as well, and even though this has been one of the hardest things we have ever done, we wouldnt change a thing. It has also been one of the most rewarding things we have done. We are so blessed to have our boys. Reading this post was comforting to know we are not alone. Thank you for posting it.
Isolation had been a continuing saga for us as well, and like you haveing people over was not on my bucket list. It is much to hard and I also hate to cook but I do for my family. What has helped is where we live now. I live in an appartment complex which I have come to love verses liveing in a house in the south becuase at those times I was utterly alone. Haveing 4 boys 2 with significant medical issues 1 who has passed on, and my husband working 6 dyas a week, I was pitiful. Living in this complexes has really helped me have some socialization with out actually inviting people over. Of course the space is a bit lacking but I have no complaints. Everyone here has come to love my baby boy and the kids are very protective of him and they come by to visit and play video games with him from time to time. My neighbors see us struggleing just to get up an incline in his wheelchair in the mornings and they are eager to help and pitch a daily fit at the office to provide a ramp for us. lol I am indeed grateful for the socialization that I had not had in a very, very long time.
Totally agree! While my daughter has very mild CP, playgrounds are hard, social skills are hard and she doesn’t do well in groups. I find that after the other parents see/experience play dates with her, they usually don’t return our calls and invite us again. Then, she’s so sad to not be included. It’s very frustrating! I wish I had more friends/girl friends who understood her and what I need in my life.
I have no children with SN, but I do have 5 children, aged 20, 15, 14, 5, and 4. The kind of situation you describe sounds alot like taking typical toddlers to gatherings of people with no/older children. Could someone with experience comment on the effectiveness of using toddler strategies to deal with this? In other words, find peers with children on the same developmental age, or with similar SN, for social stimulation. Meet other parents in smaller, 1-on-1 settings where you can focus on your SN child between coffee sips and conversation. Use both kinds of situations to help your child learn more social skills. Would these strategies help? Why or why not?
The problem with that is (at least for my 2 kids who both have autism) is often there is a scatter in “developmental age.” Kids with autism often fall far behind even a typical toddler in terms of social skills. Also, again with autism, each child is incredibly unique. One may love the park while the other is having a sensory meltdown. Believe me, I live it everyday! Even doing things as a family of 4 all together is challenging.
We have often found its easiest to get together with other special needs parents and their kids, especially ones with autism. But even then, it’s not a play date. It’s just that the parents know and expect that they’ll be chasing the kids around.
Honestly the best way we have found to get to know other people is to have the kids with an aide or respite worker.
Once in a while some well meaning person will ask me why I do not personally take my three to the park, even with my husband with me, the park is not an option right now, each child needs a one on one adult watching over them, and we are one short. I try to answer about the difficulty of trying to do these regular family fun things to folks, I sincerely believe they think I am just making excuses…yes we feel isolated, but like you I adore my 8 children and I am content with the life we have now, my three youngest bring me so much joy. To others we do not get out enough, but we pay for it for days when we try, Amanda off her schedule, Kara wanting to sleep all day due to the stress, Meghan now, she likes getting out and we are working on an activity for her to enjoy, she is ready… Small steps.
Wendy I see you!
I can relate to this so well!!! I almost never get to see anyone other than the people in my house. I always feel so alone. I have one friend that will come out to see me as much as she can. I never get all the excuses from her like I do another friend. I miss being able to get out. But I wouldn’t trade my kids for the world!
I can so relate to everything despite my child’s special needs being a bit different. He is our only child and is now in his mid-upper 20’s in age….sadly this has been our life. As was said we wouldn’t want another child in place of our SN child who is total care, but we sadly saw the invitations dwindle, I can so remember being with good friends and having a horrible time bc they were all socializing with each other and keeping an eye on their kids while they played or swam, and I was over near all the kids holding my son, totally out of their conversation, too far to hear. It leaves a stinging feeling. Moms don’t realize how much freedom they have when they can sit and watch their child play with others. I ended up not going to these once special get togethers. But it was always the same. Looking in from the outside. Visiting others is hard. Family get togethers are hard. Having people over – I can so relate. My house is a tornado scene. Clutter, mess, so bad for my son’s SPD and other issues, yet I’m imprisoned to just getting thru the day taking care of him. Others do not understand and some family I believe even resent that we are no longer having anyone over. I would love to have control of this situation. How I miss not having family over. It hurts a lot. And it’s not how I want it to be. But our son’s demands on our time, mostly my time have increased tenfold over the years. I thought things would be easier. And I’d like to have friends stop by. I can’t and then it’s become rare that anyone asks us over either. I understand. People expect an invitation in return, in time. But I also know, so many can’t come close to understanding, let alone sympathizing or showing compassion…..Appreciated this article to hear my sentiments by someone else and to know that someone else hates cooking – (I spend so much time preparing my son’s meals which need to be ground up special too) and also has to make paths thru their living room. I hate this about me and I feel like such a failure, so to hear you say this was a bit of a comfort.
Yes! We have been isolated for years! I homeschool our kids because the public schools refused to follow their IEPs and it just wasn’t worth the hassle anymore. Just about the only contact I have with other adults is online, and I work online—it’s the only option. Our last church was not at all understanding about things, telling me, “You need to beat your kids. Then they’ll behave and all their so-called problems will disappear.” Needless to say, I was appalled. Anyone with any sense knows these conditions are real. We had one family we could go visit with, who accepted us as we were, but we’ve moved to another area now. Hopefully we’ll be able to spend time with another understanding family soon. Thank you for understanding!
I can also relate in some ways. I have a son who has ADHD, Mild to Moderate Mental Retardation, Traumatic Brain Injury, Depression,ODD, Bipolar and Anger Issues. Which he takes medication for and it is control. By looking at him you couldn’t tell there was anything wrong with him.He is really a good boy.But he has to be supervised. He loves to ride the special needs school bus and He really loves school. He just learned how to read the last couple off years with assistance. He really loves art because it helps him express himself better. He is in special oymplies, he loves to bowl run track. He gets along with his peers at school. He loves me to read the Bible to him. As his mom I have just started help him read a Bible verse.What I do is read and as I read he repeat after me. But for some reason people at church is not sure about him. They will say hello to him. But they will not shake his hand or get close to him. This really upset s me because he is part of God life and I want people to love him like Jesus does.
I have also lived the isolated life. My reasons may have been different, but my children required close supervision and had sensory and socialization issues. Some things that you hope will improve just get replaced by another issue. Before I knew it, the OCD, depression, anxiety, asthma, social awkwardness, CAPD, phobias and giftedness just separated us from “average” people and sharing life with them. Sad for them b/c my kids turned out to be great people- and they keep me laughing 🙂
i am drowning in isolation and begging for friendship/support. It’s a small town and no one is there. Slowly dying inside 🙁
Julie, I am sending you a private message and so will Erin. Sometimes having someone to talk to makes a big difference. Hang in there, you are not alone!
Oh this post made me cry because the isolation is so real. We moved from our homestate last year and we have no family, no support system, and while I do have aquaintances, I consistently get left out time and time again. I too feel like I am slowly dying inside. Someone shared your post “Confessions of a Special Needs Mom,” and I just can’t stop reading your blog. You beautifully voice the struggles of being a Special Needs Mom. My isolation also stems from the fact that I don’t know anyone who has the same diagnosis as my daughter. Thank you for speaking out about the hard things!
Yes, yes and yes. I am introverted myself, but having a classically autistic teen has compounded the social network times one hundred. We needed to homeschool also due to seizures and problematic options in our area and it was very good for him, but leaving my work took away some of the outside contact I have. Many friends and relatives with “simpler” lives just drift away. I am glad that y’all can relate. Even having a virtual friend to vent with would be indescribably helpful at times.
I can relate to so much of what you wrote. Yes, SN families can be and are so often very isolated. Our only child has significant special needs – total care. As our son’s special needs became more noticeable with age we began to notice ourselves being excluded more and more from other gatherings amongst those at our church we had always been together with. Our son, did not ‘fit in’ with these others and the other kids did not care if they invited him to their house. Parents seemed most concerned with their own children, that their kids had playmates and encouraging them to include my nonverbal, multiply disabled son was never a priority – ever. We lost many friends or basically they just excluded us totally and we drifted apart.
As far as inviting people to our home – I can SO relate, THANK YOU, to what you said about not being comfortable having guests navigating a path through your living room! I felt so alone about my inadequacies about my inability to keep up with my house and watch it just deteriorate especially in the years since my son “graduated” from school entitlement. He has been home with me, constantly, 24/7/365. I am his one on one all the time. I have no help. My house has fallen into total neglect. All of my time and energy is spent supporting my son’s daily needs – all his care, his doctors’ appts, fixing a very special diet, feeding him, taking care of incontinence issues, laundry that is at least 10 times what mine and my husband’s combined is. I am married, but my husband works a lot for little pay, we don’t make ends meet for just our basic needs and my husband is not available to helping me. I am physically falling apart as my son is big – 6’2″ and 175 pounds. He needs much physical assistance and the toll his care has taken has affected me in so many areas.
My parents were our biggest support since our son was born in 1987, but my mom became terminally ill less than 5 years after his birth and thru the next almost 20 years of her life, they would take care of him while she was doing well enough, in order to give me a break, let me get to a dr. appt, or so my husband & I could occasionally go out to dinner, but it became impossible her last decade of life and 4 years ago she passed away. They have been our only real support, the only ones who ever cared enough to take care of him. They adored him. Having never moved his whole life and going to the same church it was so sad to see how no one cared enough to really get to know him, to realize how actually cruel it was to ignore him or to not teach your children to embrace those who are different. It was so sad. Some were very nice to him, especially some middle or older age folk, but while we were in church and not spending a great deal of time with him, and again, no one ever volunteered to help us out. Are people really so blind? Or is it selfishness?
Our son never had any party invites, besides going to our own family birthdays together. Our son was never included. Ever. It was heart-breaking. When he was younger, it would have worked out really well. He would not have any issues being there. He appreciated attention from others.
When I’d get together with some of my closer friends, i remember how my friends would sit by the poolside and chat, or by the lakeside and chat, watching their kids from time to time, while I was in the water, hands never able to leave my son. This is how get togethers with even good friends would go. I would be my son’s entertainment and care taker. The other adults got to enjoy each other’s adult company. I so wanted to be able to just sit and talk with my friends. With adults. The other kids got to enjoy playing with all the other kids…all the kids, that is, except my son.
I could go on and on, but my point really was answering your questions and yes I am so extremely isolated. No one would know if we dropped off the face of this earth, except family. It shouldn’t be like this. I pray that more churches really make it a priority to include those who are viewed as different because of their special needs, embrace them, train up the church from the time the kids are little, train those who are older, embrace the need for programs involving those with SN and do something about it….it’s a real heart ache. I am so lonely, so isolated and my son deserves so much better and much more in life than this. Tho nonverbal, he is social. Yet he is mainly just ignored.
Thank you for sharing your perspective and story. I agree that the church should have been the one place where others help carry the load. It takes a village to raise a child, how much more a child with special needs. It is shameful that church has often times become a social gathering place for the healthy, and not a place of comfort, rest, and assistance for the spiritually and physically weak. You are one strong mom, and others are missing out on learning from your strength and dedication. Your love for your son is so obvious. i hope that as you continue to share your vulnerabilities, that others will surround you with love.
Yes my family is isolated. I have one child who is medically fragile and has physical and cognitive disabilities. She uses a wheelchair, feeding pump and is incontinent. It takes a lot of effort and muscle to haul all of her equipment, supplies and meds out of the house. Then I have to be sure our destination is really accessible and has some place I can attend to her toileting needs. Other times, we accept an invitation an the night before or a few hours before the event, my child becomes sick. Thus, nothing is ever definite. Eventually folks stopped inviting us. I am totally with you Ellen on the idea of “inviting you to my house is not an option”. I don’t have time to prepare and recover from the last medical crisis. Can’t entertain because I am too busy being nurse Mommy in the next room.