The Tightrope

This post is now available in the ‘Life with an Autistic Son’ ebook available to download from Amazon.

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15 Responses to The Tightrope

  1. Diwali is approaching! I like the tight rope analogy. Thanks for sharing.

  2. Fireworks still in evidence here last night. Luckily L loves them and it is big sister M that has had a problem for years after someone let one off near her when she was 2. We had to lie in bed with her every night for a six months after that and she still, at age 9 has anxieties about going to sleep even though the original cause is long forgotten and she loves fireworks now too. And, how can you even suggest you might be bad parents?? We all have our moments of better and ‘could do better’ parenting but find any parent that doesn’t. Bing the parent of an autistic child certainly brings out our best and worst in my experience but that just allows us to see ourselves honestly. ‘ve stopped trying to live up to anyone else’s idea of ‘good’ especially when that model comes from the neurotypical world ;-) Have a good week.

  3. Richard Bentham says:

    Sounds like a tough week. We find ear defenders help. Sometimes having them close by for our 4 yr old helps reassure him. At this time of year the dreaded leaf blowers come out in all sorts of public spaces. My boy presses his hands firmly over his ears and goes to ground. The ear muffs help him regain composure and press on. The same is true for hand driers, vacuum cleaners, street cleaners etc. Hope this week is better for you.

  4. gamma says:

    For the first time ever wee got Spud to “watch”, some of the fireworks from our patio, with the gazebo still up he would run in there with his hands over his ears, at one point under the table, it was a very short display, five minutes in total, but he did seem to enjoy it,”in his own wee world it became part of a game only he was allowed to play” so much so the phrase”more fireworks please” is still the phrase of the day, he now sits at the patio doors looking for fireworks, and the battle now is to explain “every night” that the fireworks are all gone, while we took a huge step forward it saddens me that so much of what goes on in the world is still a huge mystery to this wee man, so glad to have found this blog though :)

  5. Kris Umney says:

    I gave my son some ear defenders to wear. It helped massively in combating the sensory overload he normally gets with fireworks. He used to squeeze my hand and try to bury his head in my coat.

  6. rachel says:

    I really urge you to watch this lecture by Dr Campbell-McBride.

    She describes how leaky gut (intestinal permeability) allows toxins to enter the blood stream and reach the brain. Strains of yeast and clostridium are examples of microbes that are unaffected by broad spectrum antibiotics so are allowed to proliferate after a course. The growth of these two should normally be kept in check by our good flora. When these are compromised and gut wall weakened toxins from these and others can leak out of the gut.
    The effect of these toxins can overwhelm the brain’s sensory processing system. Overwhelmed by sound, touch, light, smells and taste it becomes imperative for the brain to shut these senses out as the person just cannot cope.
    Though not autistic my daughter would react badly to sound. Cowering from any loud noise. She would shake during fireworks and while holding her I would feel her heart beat thumping such was her level of fear. Hand Dryers were also a big fear. She would cower and whimper if she saw one even if off and quiet and would refuse to go in a public toilet because of them. Her general levels of anxiety and stress just from being separated from me were also high and she was extremely clingy.
    She had multiple doses of antibiotics for ear infections before the age of 2. Now aged 5 I have seen a total reversal of these fear responses, she enjoyed a firework display this year. This is since modifying her diet and most importantly introducing probiotics (I use the brand called Biokult).
    Yes some might put this change down to age and a natural increase in confident but there were too many improvements in other behaviours and symptoms (severe constipation being a major one) at the same time for me to put it down to purely coincidence.
    As others have said none of this is your fault or through bad parenting. The care and thought you give to your son and how you are always searching for ways to make things better for both your boys is always evident in your writing.

  7. Ger says:

    B’s Dad, i do not have an autistic child, but I know “the tightrope”. One of our boys held the family in thrall for ten years; we never knew what would set off a rage. Often we despaired, and thought we could not go on. But then we would think, if we who loved him couldn’t cope, who else could do better. You are not just doing your best for your son, you ARE the best for him. This was a bad week for you, but your happy care-free boy will reappear.
    And the state of the house doesn’t matter. You are not trying to win a Good House-Keeping award, but build a life for B. With the foundation you are giving him I hope you will be amazed at how wonderfully he turns out. I know I am with my son.
    Next year, you could take a ferry at the October half-term over to Ireland, where fireworks are illegal, and Guy Fawkes is not celebrated. Noise cancelling headphones and a music player would be cheaper though.

  8. Our tightrope today meant allowing our son to eat ‘cold lunch’ because he couldn’t countenance the idea of ‘two hot dinners’ in one day. Stay strong! This post is an example of good parenting. I’d like to see anyone who could do better – I can hear the parents of autistic children up and down the country shouting hell, yeah! ;-)

  9. Al says:

    Once again, it’s like you have read my mind. Half term, Halloween, clock change, fireworks – it’s all caught up with us this week. I have been wearing that same look you have described in your wife today and its not like me but at least you have reminded me that it’s not only me! Thank you, I feel a bit better now

  10. Definitely not a bad parent. But you can add a circus skill to your CV, how impressive is that?! Bizarrely your bit about repair reminded me of my grey hair, which I’m sure has come earlier than it otherwise would have….. and the whole infant school photo, which as a governor I was invited to be part of. It now sits proudly on the school wall and every time I see it I cringe and think OMG how could I not have known that my roots needed doing??! Too much balancing on the tightrope, not enough time to think of me. Hey ho, that’s our life, gotta laugh! After bad weeks have got to follow good weeks so chin up ;)

  11. caleb72 says:

    I feared we would be in for a tough time with Halloween and Bonfire night, but Oliver did really well and somehow we got away with it. Next year may well be a different story of course and we will just have to wait and see. Ironically it was his older brother who was disturbed by the fireworks this year and he called me into his room a couple of times asking when they were going to stop.

    The look of defeat you describe on your wife’s face is one I know well at the moment too. Like you, we have good days and bad days, but more often than not most mornings, I feel guilty going to work, as I know my wife desperately does not want me to go. It’s very hard leaving her to deal with the day ahead. The school run for our older son, the never ending appointments with speech. portage, OT, and many more. Its truly draining, and we have both at times questioned whether we can actually do this, but of course, we have to do this because we love him and want to give him the best life he can possibly have with the challenges he faces. Having these feelings does not make you bad parents (although I understand how it can feel that way). It just makes you human. It certainly feels like walking a tightrope though I totally agree!

  12. Dovi's mom says:

    I chanced upon your blog via a google search (or was it swagbucks?) and I’m speechless. This is almost a mirror of my own life; I have a 4 1/2 yr old with pretty severe autism. During Hurricane Sandy I kept muttering that she was no match for Hurricane Dovi. Today is Veteran’s Day and he is off from school. My house is already in shambles and i’m barely holding it together.
    I look forward to reading more of your back entries and getting to know your story.

  13. B's Dad says:

    Thanks to everyone who took the time to respond this week. I will act upon the good advice offered. The fireworks were never ending, and B had a very tough diwali when everyone at school was dressed differently, but generally it’s been a better week. And, looking on the bright side, I’ll be saving myself a small fortune not buying fireworks each year. Sometimes they’re unavoidable though:

    We took a risk over half term, and went to see ‘Disney on Ice’ with the boys. It would be fair to say the magic was lost on B. He was unimpressed by the explosion of music, colour, costumes and breathtaking dancing going on. But, crucially, he sat through it all. Not without moaning that he wanted to leave of course, and not without serious bribery (slush puppies and smarties). But he did get through it without too much of a problem.

    Until the end. The finale of the show involved two (noiseless) indoor fireworks. He has not forgiven us yet.

  14. thebear says:

    Hi. I Once again your post really got me thinking about lots of things. The parents of kids with ASD have a unique job and i feel we do not give ourselves enough credit . We have a lot to hold together. Small Boy and i were at our first Halloween party this year , just a few slightly older kids and some nice party food . I was so excited for the both of us that we had been invited and pretty relaxed about the whole thing. After all Small Boy had been in great form all week and was excited about going .However, it quickly became our very own Halloween nightmare. Small Boy hugged into me the entire time, wouldnt look at the other kids let alone play alongside them and was petrified of the fireworks not to mention the pumpkin shaped cake.The stark reality of the isolation that autism can bring hit me like a juggernaut .Here we were at a party and not only was Small Boy on the peripheries, so was i. None of the other parents knew how best to include us so ,aside from the scant “comes as standard ” benign smile in our direction, they ignored us. It was the most “autistic” i have ever seen him and i cried the whole way home not just for Small Boy but for me. Yes perhaps it was a bit self indulgent of me but i was sad that i lost out too.
    As soon as we got home and Small Boy was out of his pumpkin costume we had a big cuddle . It was during this wee moment snuggling together that i realised i had actually wished Small Boy different. I was appalled at myself . The bond that we two have is entrusting, exclusive, eternal, isnt that exactly what every parent hopes for ? So what if Small Boy need his mummy to help him navigate his way through every social occasion , i will do it earnestly. Small boy walks that very same tightrope. I am his balance pole ,and dam good i am at it too. Just like you are too.

  15. Rhian says:

    Reading this is just like how things are for my husband and I and our son who has ASD. Thanks for sharing

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