Dear friend …

Dear friend

Thank you for the Christmas card. It was nice of you to send me one though I couldn’t help but wonder if your card was just a polite response to the one I sent you.  I don’t know why we do it; this business of sending cards to each other when we hardly see one another.  I guess it’s just part of that silly card-swapping nonsense that happens at Christmas time.

I read your comment about “catching up in the new year” but I don’t think you mean it and even if you did, I’m not sure I have anything to say to you anymore.  Ever since we were new mums you were always the one who said you would call but never did or who would turn up out of the blue when you said you couldn’t make it.  It didn’t bother me back then.  I went along with your relaxed attitude because I enjoyed your company and we got on.

Life was also easier back then while my daughter was containable in her pushchair and my son was hanging off his toddler reigns.  Only just manageable though.  It didn’t take long before the challenges of autism and aspergers started to impact on my life and your ‘relaxed’ nature started to become a problem for us.

You see my children thrive on routine, particularly my son.  Any change upsets him greatly as it did that time when we had arranged for you and your family to visit us.  My son was so looking forward to it.  He was so excited.  I rang you to confirm things but you claimed to know nothing about our get together and reassured me that we would get together in the future.  So vague as usual.  I was disappointed in you and sad that you could be so flippant with our friendship.  I was sad for my children too; they used to love you and your family.  It was too much for my son to bear; he had a meltdown.

You probably don’t understand what I mean by meltdown because you know nothing about autism.  A meltdown is not a tantrum or bad behaviour.  It’s when my son’s brain doesn’t function well and he is unable to reason and communicate properly.  He becomes inconsolable and destructive and a risk to himself.  Watching my son’s distress is terrible.  I can’t look at him, talk to him, hug him or even hold his hand which goes against all the things I want to do as a mother.  Ordinary motherly love does not work in this instance; my love for  my son comes from knowing that I have to wait for him to calm down, a wait that can feel agonisingly long.  As it was, it took the whole weekend for my son to recover.

I suppose I ought to sit down and talk to you about our challenges but you have proven that our friendship isn’t strong enough for that.  When I bumped into you and your friend the other day your aloofness confirmed to me how you only want to be friends with mums whose children are playmates with your children.  Of course my children aren’t one of those playmates because they don’t know how to play with other children.  There again, you don’t give my children a chance to practice do you?   You never invited my children to your children’s parties did you?  You never invited them to sleepovers or play dates either?  I wonder why that was.  Did we not fit in with your cosy group of mothers and children?  Were my children too ‘different’ for you?

As it is, I am too tired to talk to you anymore.  My days are a whirlwind of dealing with my children, a vocation that absorbs so much time and energy that I cannot work outside the home.  I know you’ve been puzzling about that for a while now.  You’ve asked me so many questions about my ’career’ (or rather the lack of it) that it’s obvious you’re having great trouble understanding why I continue to stay at home.

I can understand it in a way.  You probably think that because my children look ‘normal’ they do not need any more care than your children but the reality is that they both have an autism spectrum disorder,  a lifelong disability that affects my children’s ability to communicate, to interact with others and to cope with a change in routine.  It means I have to communicate to them in ways that they will understand.  Their social difficulties mean I have to take time to teach them the social rules but even then there is no surety they will learn them and apply them.  Their inflexibility means I have to prepare for every change so we can’t just get up and go out.  Then there are the sensory issues that accompany ASD; how things look, feel, taste, sound, smell – they all affect my children in different ways and at different times.  Do you know how much distress raw carrot can cause my daughter if she gets the slightest sensation of the vegetable on her tongue?  Do you know how brushing my son’s teeth can cause him pain, such is the sensation?  These are just some of the things we have to deal with on a daily basis.

It’s exhausting and overwhelming and leaves me little time and energy for myself let alone to catch up with friends.  Maybe one day in the future when life (hopefully) gets a bit easier I’ll catch up with you then.  There again, maybe not.

Yours

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16 Responses to Dear friend …

  1. Pingback: Mumsnet’s #thisismychild campaign – my thoughts | For Special Needs Children

  2. Em says:

    Found yo through loveallblogs

    I have written similar letters in my head time and time again. My son isn’t autistic but his complex medical needs and my fears for him are not understood by tehe people I thought were my closest friends. I have pleaded, shouted, begged, cried, explained, but they just don’t seem to get it and I wonder sometimes if they even want to try. My aim for 2012 is to try not to get so upset by this, not to lose their friendship entirely but to see them for who they really are – fair weather friends – and to rely on the people who have really provided the support I’ve needed, much of which, to be honest has come from the online community.

    I look forward to reading more posts from you in the future and catching up on the previous ones I have missed.

    • Aspie in the family says:

      Hi Em and thanks for reading and commenting. I’ve realised that many of my friends are fair weather friends too but that the ones who do accommodate my family are very special indeed. Like you, the online community has also been fabulous and a great way of sharing experiences. I look forward to chatting with you again.

  3. h0pefulmummy says:

    your post has me in tears. so, so true…
    the diagnosis of my daughter with sma has brought out the best in some of my families and friends and the worst in others. some have “survivor guilt”, some don’t know what to say, some don’t want their children run over by your daughter’s powerchair. I certainly only really have time for those friends who can stand by me, no matter what; who can support me; who know that when i say “i’m fine” that i’m truly not; who see eilidh for who she is – a beautiful little girl who fills our hearts with joy… i look forward to reading more about you and your family. take care

    • Aspie in the family says:

      Hi HopefulMummy, thanks for reading and commenting as well. I can never understand why some people turn away from those with disability; I wonder sometimes if disability challenges them in that they don’t know what to say or do and so its easier for them not to become involved. Its no excuse; I wouldn’t mind if people admitted that did not understand my son’s ASD or my daughter’s aspergers as long as they take time to learn about it and give my family a chance. Like you, I now only make an effort with those who have time for me and my family; I’m not going to waste any more energy on those that don’t care. Getting to this point (and writing this unsent letter) feels quite liberating.

  4. Blue Sky says:

    Oddly enough this is starting to happen to me now. All the Mums I knew through my 19 yr old NT dd are starting to drift away, I guess because they’ve ‘got their lives back’ and I haven’t. Perhaps they feel awkward around me. According to my dd, they all think I’m amazing but they would rather do that from a distance it seems x

    • Aspie in the family says:

      I understand what you’re going through. The people I met through having my eldest daughter have been drifting away too and developing their own careers and lives. I feel left behind. x

  5. Scottish Mum says:

    How thoughtless and shallow of your friend. I have sadly had experience of mums like that too and they tend to drop off in time which is even worse, but I’ve come to realise that I am better off without friends like that in my life.

    I can’t understand people who let our kids down, but I guess that means they probably wouldn’t think twice about anyone letting down their own kids. Really sad, and sorry for your son that he had to be so upset. I can’t say much more than we’ve been there and probably both of us will again in the future.

    x

    • Aspie in the family says:

      Like you I’m now realising that I’m better off without people like this in my life but it is sad that people can be so shallow and uncaring. Deb x

  6. Galina V says:

    A great post, as usual. I can totally relate. We have “lost” so many pre-autism friends, who just disappeared out of equation, and good riddance, i say.

    • Aspie in the family says:

      Hi Galina. Losing friends seems to be a common experience for many of us with special needs children but as you say, good riddance to those who can’t deal with it. Deb x

      • Baltazar says:

        I knew. Doctors told me I most likely could not have a child. I had four suirerges and a lot of scar tissue. My husband and I submitted and let God take over.I knew the day Christopher was concieved. I knew that God had a plan for someone like me and my husband to love and take care of Christopher.He is our miracle. He changes everyones’ lives who meet him. His smile is a great blessing. I am humbled by this experience, however rough it has been. I knew that while I was working as an ER nurse, someday I would work with children with special needs. I had an affinity to them and here we are with an autistic child. I knew I would advocate for them and become a loyal warrior for other parents perhaps suffering and needing help to cope. It’s a gift, you see.We have met the most wonderful people too. What could be a greater gift than to be around such caring people who find ways to help and support each other.I will leave this Earth, someday, knowing I was given a gift and not a burden.What the hell is Normal anyway???? You are all my heros. The parents that don’t give up. God bless you all. Love, Holly

  7. Suze says:

    Well, now I’m in tears! Your wonderful post encapsulates so much of what I felt when our Aspie DS was younger (he is now 13). When he started primary school and all he – and we – wanted to do was make new friends and fit in.
    It also reminded me of my former best friend, whom I would trusted with my life and who adored DS.
    When her daughter had a birthday party, she invited all the children in the girl’s class…except a boy with special needs. “He’s a horrible child, really noisy and disrupts everything,” she told me.
    “Oh really,” said I. “Just like DS then.”
    “Oh no, he’s awful – spoils it for the others. He’ll be there over my dead body.”
    And there our friendship ended.
    Some months later, we met the child at one of DS’s SALT sessions. Nice kid, I thought. Still, each to their own – her loss…in so many ways.

    • Aspie in the family says:

      Hi Suze, sorry to hear about your experience. I think so many people don’t understand that what appears to be disruptive behaviour on the outside is actually a symptom of an underlying disorder or disability. Its awful that people have to be so judgemental but as you say, in the end, its their loss because they miss out on some very special and unique children. Thankyou for commenting. Deb

  8. Lizbeth says:

    This sounds like a mom I knew a long time ago. Pre-Autism. I was ditched like a hot potato when my son would act up or be different. I was so hurt. But then realized our friendship was superficial at best. Still didn’t take away the pain of being rejected though.

    Your kid can play with mine any day. We may spend it allocating computers and electronics and lego’s but I think it would be fun.

    • Aspie in the family says:

      Hi Lizbeth; I agree with you. It is very hurtful being rejected like this even if we do come to realise we are better off without such shallow people around us.

      I’m sure our children would have a great time enjoying lego, computers and electronics!!! I can imagine it now LOL. Deb x

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