6 Ways to Combat the Loneliness of Special Needs Parenting

Loneliness is a scary part of special needs parenting.

I have been very lucky my whole life. I never really got to experience true loneliness. Even as an only child, I was usually surrounded by interesting books and interesting people. And I only really realised it (like most people) once I lost it.

Since I was a little girl I have been surrounded by interesting people, all willing to talk to me. Well, even if they weren’t that willing, I used to talk enough for both of us (or so my dad says). The great schools I went to were full of bright, interesting people. I might quote a book I was reading, and my friends would know where it was from. Sure we spent way too much time discussing the OC, but we could also talk about Tolstoy or feminism or history.

Then I went to uni and it continued – sure I usually felt like the stupidest person in the group (and usually I was). Everyone in my course had received a mark somewhere in the top 1% of the population. Yes, they were a bit intimidating but also fascinating. An intelligent, educated person can be talking about what they had for lunch and still make it amusing. Then I also found my dream job doing things that I loved. So far so good.

Anyway, becoming a mum was incredibly painful for me mostly because I lost that. Not completely of course. My husband is fantastically clever and interesting, and luckily I even understood a lot of his technical work gibberish and liked it (thank you, Finance degree). But he wasn’t home for ten hours per day and even when he was, he (very understandably) wanted to wind down, watch the cricket, and just relax. I saw my family on weekends and my friends once a month or so. Even then though I would spend a lot of my time out of the room, one on one with Michael.

It must be hard for almost all mothers. You give up everything you have worked hard for your whole life. Suddenly it doesn’t matter if you were first or last in the class, if you are a CEO or a shelf stacker. You still don’t sleep, push prams endlessly, do laundry. And you do it all alone.

I gave up on the traditional cure for loneliness – mothers groups – very early in the game. Mostly this was because Michael was too hard. I couldn’t sit still at a cafe and talk to anyone. Most of my time was spent bouncing him around. And as he learned to walk I started running after him. I have seen other mothers able to leave their little kids sitting on the grass while they watch them and have a cup of tea. My son was so hyperactive I have to spend my entire time running after him and saving him from jumping in the pond. It’s not that conducive to conversation, as you can imagine.

I did have support too, I should add. Lots of people that would take Michael for me while I rested. I needed the rest but it wasn’t really the ‘cure’ everyone thought it would be. It wasn’t really rest I needed, it was stimulating conversation of the type I used to have freely every day. No amount of getting a hair cut or catching up over coffee was doing for me what my job used to. Yes, I loved my child. Yes, every time I looked at him, stole a cuddle, or kissed him all over (many times a day) I thought that he was the best thing that ever happened to me. But anyone that tells you they don’t miss their job and that being with a baby at home is not boring, is either lying or has the IQ of a snail.

I made plans to go back to work. Much later than I thought – because my brain refused to let me until Michael was 18 months old. He was so vulnerable and he needed me so much. Eventually I said enough was enough and went to work. There was a glorious week in there when I actually did go in to prepare for my return, while my husband was with Michael. It as the best week EVER, being a working parent while you have someone at home that you know loves and cares for your child is the best experience. Every working parent that has someone like this at home should kiss their feet every day.

And then the autism diagnosis came and the grieving started. It did answer a lot of questions but it made me ten times more lonely. Because no one that hasn’t gone through this could understand me. What makes it worse is when they tried and make me feel better. Especially if their chosen way is to tell me that everyone else has it tough too (hint: they do. They really do. But don’t tell this to someone in their first stages of grief). And even though in absolute numbers there are large amounts of children with autism out there, I didn’t know anyone personally with a child on the low functioning end of the spectrum.

It’s been a year and a bit since the diagnosis now. I am still at home with my little three year old, and due to the sheer amount of support he needs, I probably will be for a while. But I don’t feel lonely anymore. Here are some techniques I have used to get there:

One: Give People The Benefit Of the Doubt

What’s the biggest enemy of a special needs parent? Comparison. Especially for the first year, you spend almost all your time comparing your child and what you think they may never be able to do, with all the other kids around you. Social media makes it a thousand times worse since other parents will share only their best moments. The way they got back in shape three months after birth, or finished a degree, or their child won five awards in assembly.

I learned to smile and nod, a lot. Ignore any idiotic ‘our children are hard too’ ramblings. I actually had one woman tell me how awful it was that her son had allergies to a few different foods and she had to take her daughter out separately sometimes so they could still eat dairy. She was very distressed about this. Life was SO unfair, she told me. This sounds minor (my son has allergies and asthma, you can’t compare) but it was major to her. And she was sharing it with me.

If I didn’t want to be lonely, I had to learn to accept that these things that seemed totally minor to me were meaningful to her. I had to sympathise with people and their own suffering and relearn my social skills. These people are still my friends, and I will eventually care about their children and their problems. They are not petty problems, just because they are different to mine.

No one around me had any idea what I was going through. This meant I would have to at least make an effort to explain what I was going through, and listen to what was happening to others as well. A two hour coffee date with a friend can do wonders. The important thing was to stop assuming the worst about people. That they wouldn’t understand or that they would be insensitive. Many times people pleasantly surprised me, once I gave them a chance.

Two: Find Others In My Position

One of the hardest things as a special needs parent is that you may not know anyone else that shares your experiences. I can read all the blogs I like about people with Aspergers but what they go through is completely different to my child. Their suggestions and experiences are often completely irrelevant for me. If anything, especially at the beginning, chatting to parents of high functioning kids made me feel even more lonely. They had no more idea of what I was going through than any parent of a typical child. We had nothing in common with them either. I could not use their strategies, I could not follow their suggestions, and there was no way I could look at autism the way they did. Especially not at the beginning.

And where were the blogs by parents of kids like mine? Every parents group, every blog I found, every book I read, everything was about high functioning kids. Out of every ten blogs, two might be about kids that were had the same kinds of support needs as Michael. The uplifting stories would talk about a nonverbal child, but when I read more closely he was the kind of nonverbal that started talking at two and a half. And even the nonverbal kids had other ways to show they understood the world.

But I did keep looking. I didn’t find much at first – so I decided to start this blog, so that anyone else that had a child like mine would have something to help them. Therapy was helping Michael so much that I wanted to make sure that these parents too had hope, could see that a child that at the beginning could do very little, could in fact learn to play and learn to learn. But I found more blogs and other parents as I went. Finding parents (and by the way adults with autism) that started out at the same stage as my child took me out of the loneliness, and made me see future possibilities that I never could have, without the Internet.

Three: Get An Interest Other Than Autism

I remember before I had a child, I was a person. It seems unbelievable now but I remember it clearly. I had interests. And a career. I really cared about the Henry Tax Review (I didn’t say they were GOOD interests) and I loved reading, and discussing those books with my friends.

Once Michael was born I tried as hard as I could to hang on to old me. I did my Masters, made plans to go back to work. Even though Michael was taking two hours to get to sleep at night and then waking up screaming every five minutes, I tried to keep a normal life going. I was actually mid-way through going to College of Law so I could be admitted as a solicitor when he was diagnosed. And of course once that happened all of these things became completely meaningless to me. Compared to my child and how much he would struggle in life (in any world) these things just became so unimportant.

I only read books about autism, researched therapies, and tried them out. The first six months were just a matter of survival.

Eventually however I started to breathe again and get myself back. My husband and I have time to talk to each other and watch silly TV shows.

And it’s important that all of us have something else. No one’s life (especially not our children’s, but not ours either) should be just about autism and therapies. There should be fulfilling work of some sort, whether paid and outside the home, or not. We have to find meaning in all the things we do and as women especially we have to stop losing ourselves in our families. It doesn’t matter if it’s reading, writing, volunteering, or working as a soul sucking tax lawyer (I can’t wait) something needs to exist in our lives.

Four: Sometimes, Just Keep Swimming

In my first year I often felt loneliest when I thought about my future. But the future is unknowable so of course what I saw in the future was just an extrapolation of what was happening in the present and had happened in the past. Maybe that’s the economist in me.

What I saw was coloured so much by my present that it changed completely day to day. One day I had no sleep, Michael was very difficult, and couldn’t figure out the simplest cause and effect toy. So the future I saw would make me shudder. The next day I would finally get some sleep and Michael would suddenly start imitating actions he couldn’t imitate before. And suddenly the future looked much more rosy.

Early childhood is always challenging, with or without a disability. With normal parenting you can expect that eventually the child will grow enough that they may move out. In fact they may look after YOU one day. If your child has a disability, depending on what kind, you may not expect that. I certainly don’t. But they do get easier, you do learn to read and help your children better, and you can move on. This will pass. It is likely you will be able to resume your career, find your lost soul and meanwhile find meaning in the life you lead now.

Five: Joint a Support Group or Counselling

There are many autism support groups out there. Some are online, others are in person. Some are just a bunch of people talking, others have guest speakers and a bit more structure. You should keep changing until you find one that works for you. Which ones are right for you will depend on what you are looking for. It can be easier to find like-minded people online because of the sheer amount of groups available, but of course you are also vulnerable to possible trolls. And whatever support group you join, there will be people there that you strongly disagree with. That’s life.

For example when Michael was just diagnosed I just needed a place where they would understand and hear my grief. Going to a group full of relentlessly positive people with (let’s face it) mostly mildly autistic children didn’t help me. Their answer to every behaviour was ‘social stories’, which was so far above my little one’s level of comprehension as to be in a whole other universe. Eventually I found a few that have helped. And as my grief subsided I changed a few times until I am now comfortable with the support I have.

Six: Find the Meaning

There is no cure for loneliness. It certainly isn’t about the number of people around you – it is about how many relationships you have that are intimate, close, and fulfilling. It is also about liking yourself and finding the new meaning in your life. I remember reading about someone with a cancer diagnosis, how they struggled to find meaning in their everyday activities. And I thought – I wouldn’t struggle with that. The meaning in my life is very clear now, and it will be forever. It is to make sure my child is making progress, has great relationships with at least a few people in his life, and that both he and my husband are happy as much as possible.

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