A lesson in friendship

 

 

Since becoming a parent of special needs children, I have found it difficult to make and maintain friendships and as a result my social life has somewhat shrunk.  It wasn’t always like this.  When I first started out on this parenting adventure with my first born, I was like most other mothers - enjoying get-togethers at toddler groups, the coffee and cake mornings at each others houses, the visits to the local park.  These opportunities gave me welcome moments in which to share my joys and worries about motherhood and to develop a network of friendships.  Later as my daughter and her friends moved into school and developed mini social lives through the abundance of school clubs, parties and out-of-school activities, there came more opportunities to connect with other parents.  It was a lovely to feel part of a community but unfortunately it didn’t last.

The arrival of my son a few years later suddenly launched me into the world of special needs, exhaustion and growing isolation.  Even as a baby, my son’s responses to the world propelled me to do things differently; to suddenly withdraw from a social situation or a public place because of my son’s reaction to something or other. And as he moved into toddlerhood and learnt to walk the challenges grew as I spent most of my time either running after him or dealing with very difficult behaviour whenever we were out and about.  It sounds ridiculous but I was never still enough, or relaxed enough, to have a proper conversation with anyone.  I was always on alert to any changes in my son’s behaviour and attempted escape missions.  Consequently mixing with other mums started to become difficult and it was sometimes easier just to stay at home and let my son become engrossed in his Lego or toy cars.  As he progressed into school his social difficulties became pronounced with very few party invites or opportunities to play at other childrens’ houses and little or no involvement in school clubs or out of school activities.  As well as the upset over my son’s social exclusion, I also missed out on opportunities to get to know the parents of my son’s class mates and I started to find myself on the edge of the school community.

Yet somehow I managed to hang on to my old friends during my son’s early years but even some of these relationships started to become strained after my son’s diagnosis and school refusal a few years later.  I could sense that they couldn’t understand why my boy was autistic and why he suddenly developed agoraphobia and couldn’t leave the house.  Conversations became stilted; no-one knew what to say.  Slowly invites started to become less and I started to find myself feeling even more isolated.  In part though, it wasn’t always their indifference or embarrassment or whatever it was they felt about our situation but also my responses to our very difficult situation.  I was exhausted and so preoccupied with my son’s situation that I just didn’t have the energy to keep up with friends or to manage a social life.  I also found it difficult to explain our situation or to ask for help for fear of putting people off even more.  If you think talking about adult mental health problems is taboo, then talking about mental health problems in children is even more taboo in parenting circles. 

Eighteen months later though and I have recently learnt how wrong I was in not keeping up communication with some of my oldest friends.  During the bank holiday weekend me and my husband became reacquainted with a couple of old friends who we hadn’t seen since my son’s agoraphobia a couple of years earlier.  It was a lovely meet up.  It was one of those where it never felt like we had had a break in our friendship; we all just slotted back to how we used to be, laughing and giggling about our exploits as parents and individuals.  And it was during this get-together that we felt  able to discuss our son’s issues with our friends to which our friends responded by offering us help.  We were both touched and appreciative of this and we are now looking forward to further social occasions with them.

But I think there is a point in this for every parent of special needs kids.  Whilst some people may avoid us because they can’t deal with our situations, others can and to those friends we must try and keep communication lines open and accept their help whenever it is offered.

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14 Responses to A lesson in friendship

  1. Aspie in the family says:

    >Hi Steph, you are not waffling at all. The struggle to socialise seems to be a common problem for both parents and special needs kids. It sounds like a good idea to contact the other class mums – it may be worth getting support from the school too and see if they will educate the other children about ASD. All the best. x

  2. Steph says:

    >I missed this post earlier but oh boy YES. It almost made me cry reading it because that's exactly how I have felt since my DD2 was about 6 months old (so for the last 3 years or so). I had fantastic coffee morning time with my first one, and took her to Dinky Dancers etc, but none of that was possible with number 2, and it did become a struggle to leave the house – things always run smoother at home. Or at least, if they don't, you don't hve to look so tired and haggled and almost teary in front of others. It has got a bit better, but even now I make sure there's always a back up/get out option wherever we go. I've been thinking about emailing all the class mums when she starts reception in September to explain what Sasha is like, as I like to get it 'out there' to help people understand. But it's sad I'm even thinking of having to do that; I never did for DD1. And I don't want to push for a social life for DD2, but then she's not going to do it herself, is she?! So much resonates. I'm sorry for waffling too!! x

  3. Aspie in the family says:

    >Hello Max and thanks for commenting. Its hard isn't it when people see our children as normal and can't understand how difficult it is for us. It is probably one of the reasons why I withdrew a bit; the problem was that I forgot that there were some friends who did care. One thing that I have done is to also join a support group and I am now making new friends who also have children with additional needs – it feels easier because everyone understands.

  4. max says:

    >This is a brilliant post. I appreciate the idea of shutting away; in fact I can see myself doing it. I just can't keep explaining, just because J 'looks' normal. My friends are few and far between. As for parties, friends etc I see where you are coming from… I keep worrying about it, but J doesn't seem bothered! However, having read this, maybe I will make just abit more effort and see what it brings…

  5. Aspie in the family says:

    >Hi Looking for Blue Sky – thank you for your very insightful comment. This is something that has happened to me, but within my family. Initially I found that it was easier to say as little as possible about my son's issues because some family members saw it as bad or disrespectful behaviour towards me. I think this is one of the reasons why I withdrew generally. Unfortunately it was only when my son became unwell and out of school that they started to realise the extent of his difficulties. Since then things have improved and I have been able to very gently reeducate them but I still feel protective of my sons behaviours because I want them to see the person first, not the behaviour. Gosh its complex isn't it?

  6. Looking for Blue Sky says:

    >I've been lucky to hang on to my friends, but they don't get it and they hate my son's behaviour and what they see as his disrespect to me. But I know that they say what say because they care about me, so I say nothing – I've tried to explain Asperger's many times, but I think that even some members of my own family think it is just an excuse for bad behaviour or that I'm a too soft Mammy. So it's great to be around other Mammies dealing with the same issues, as they understand xx

  7. Aspie in the family says:

    >Hi MWM – glad you are back and hope you are well. I agree that blogging is helpful as it brings us in touch with others in a similar situation plus I find it therapeutic to write about stuff. Will pop over to theramblingpages soon.x

    Hi Lizbeth – thanks for popping in and leaving a lovely comment. It was good to meet up with old friends and it made me realise how I need to do this a bit more often.

  8. Lizbeth says:

    >I just found your blog and love it. I'm glad you were able to meet up with your old friends and chat. That's great!

  9. MWM says:

    >Hi, I have to say I could of written your post myself but then I think I have said something similar before on previous comments. I am bakc after quite a long break, but have been catching up on your posts, as I always find them so interesting (use to be super lttle men, then MWM but things gone wrong there as well, so I am now at http://theramblingpages.blogspot.com/). Sorry for all the shunting about. To get back to your post though, I was the same due to the challenging behaviour I never relaxed enough to enjoy a social siutation and the invites soon dried up. Now we have moved to a new town I am hoping to be less isolated but I think one of my reasons to start blogging was due to a lack of a social network and people I felt I could speak to. I agree with Jontybabe, I soemtimes feel my relationships with the doctors, teachers and SENCOs are better and closer than that of friends, but it always worries me that I come across as desperate to them, in terms of needing to talk!

  10. Aspie in the family says:

    >Hi Jontybabe, thankyou for sharing your experiences (and you are not waffling on at all). Its great to hear that you built up your life again and I agree with you that we have to be a lot more proactive. Now that my son is starting to settle in his new school, it is time for me to build up my life which I am now slowly doing. x

  11. jontybabe says:

    >Gosh what feelings this blog brought up for me. I totally agree with EVERYTHING you said and could relate so much. I did the usual circuit of mums and tots etc with my son and had a whole social network built up around him. I was a stay at home mum at the time. But then when my daughter was born and her behaviours started to become very challenging I found it was easier to withdraw from life so that I could manage her better. I've had a group of friends from school that I have kept in contact with since we were teens, and always had them but I kept them at arms length. When I suddenly found myself a single parent I realised that I needed to get out of the rut I had found myself in and things had to change. I began to socialise again with my school friends and I went back to uni and therefore back into the workplace (which brings its own challenges when parenting a special needs child)!. However, I am very happy to say I now have a huge group of friends from different walks of life. Some can handle my daughter, some can't….but thats ok too. Being the parent to a special needs child is very lonely. Doctors, nurses and specialists all seem to be your social life! As parents we have to be more proactive that parents of NT kids to find our way in life! sorry for waffling on! lol. x

  12. Aspie in the family says:

    >Hi Crystal Jigsaw – thanks for commenting. It has also been a harsh lesson for me to find out that my so-called friends weren't such good friends after all. Fortunately, it seems that I do have one or two good friends remaining and I value that. But as you say, the ignorance of some people is frankly shocking – no wonder bullying is such an issue. Thanks for the offer of support by the way; its very kind of you and much appreciated. xx

    Hi Fiona – thankyou for sharing your experiences too and I'm glad you have had a more positive time of it. The school you describe for your 10 year old sounds just like my son's old school. Now he is in a special school, things are easier and I find it a lot more comfortable being in that environment. I just wish my son had had that a lot earlier in his life, but oh well we're here now.

  13. Fiona says:

    >My experience is somewhat different. We knew from very early on that J was disabled and so we didn't really have that change from 'normal' to 'disabled.' He has therefore always been easily accepted by others. Our friends also tend to be liberal, academic types and even if they initially felt unsure have always made an intellectual effort to understand, accept and include. (Problem is they all live too far away to help!) I've only had one occasion when J was not invited to a birthday party when the 10 yro was and that invite came from a child whose Mum was a teacher! I handled it by declining the 10 yro's invite. She very quickly realized I was livid. Having said that,I always feel more comfortable with the friends I have made through J's disability. The common ground we share, the acceptance and understanding. We're lucky in as much as we get the opportunity to meet other parents at J's school regularly.

    For the most part I dislike the parents I have met through the 10 yro. Pushy, end driven, full of one-up-man-ship. Complaining about disruptive children in class holding back their child's education!! (Kids with ASD's etc.,) Sometimes I feel like shaking them and shouting into their faces that they don't deserve their children. After all they aren't little puppets put on this planet to jump to their parents whims. Ugh! I can understand how you withdrew though. We do it too when we have to. It isn't easy being the parent of a special needs child. Our kids don't come complete with a manual!

  14. Crystal Jigsaw says:

    >This post makes me sad and cross at the same time. It is absolutely typical of parents of NT children who assume just because their child doesn't have special needs, they are perfect. A very deluded and ignorant view of life. Exactly the same happened to me and now I have come to realise that the mums who dwindled away were never real friends to start with. Some remained and some are very supportive but I too, lost a lot of friends because of their lack of understanding my situation. Also, some parents actually think that if they allow their "perfect" child to mix with a child with special needs, they will either catch something or fall behind in life. It's pure ignorance. I lost a few friends when Amy was growing up, whom I considered to be good friends but who's children have grown up to be no better than any other child. In fact, they are the ones who bad mouth, bully and taunt children like Amy and your son, because they see them as "different". And where do you think they get this attitude from? One just needs to look at the parents to answer that.

    I'm always here if you ever need to get something off your chest. Email me anytime.

    Take care, CJ xx

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