Forty Things I Didn’t Know Five Years Ago

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

LWAAS 3d book cover

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26 Responses to Forty Things I Didn’t Know Five Years Ago

  1. Alan says:

    Hi, I have contacted you before and have contributed to one of your blogs. I wondered if you would help me and my wife out. She has written and recorded a song to raise money for the National Autistic Society who were very helpful and supportive to us in the early days and continue to be. Could you please tweet the following link to your followers …

    https://itunes.apple.com/gb/album/rainbows-single/id636977258

    I have tweeted you with this a couple of times but not sure how often you check it. I know this is a bit cheeky (even cheekier would be to ask you download it), but it is all for a good cause. Thanks. Alan.

  2. Ann Kilter says:

    Reading your list makes me feel a little tired again. Your brought back memories of our own travails with late potty training, calls from teachers, special visits, and fighting for our kids. But it’s worth it.

  3. 18 is the one that get’s me. I have one friend now who knew me before diagnoses. All my ‘new’ friends have children with extra needs. Write this again when B is 17! Don’t want to scare you but age 5 is a doddle compaired to age 12 or 14! Good luck and keep the alcohol cupboard well stocked!

  4. Lynn says:

    41. – Did not know the influence you would come to have on others through your blog….Thank you

  5. Lesley Edwards says:

    As predicted I laughed and cried when I read it (it took a while because of the tears in my eyes). I have a son Dylan whos 9, he was diagnosed at age 4 (even tho I knew at 18months old he was special) I can relate to nearly all of the points you mentioned, this is why I avoid reading bloggs it somehow makes it all real! Most of my days are whirlwinds, working full time so I can keep him in “treats” incase of any incidents and then discussing Thomas the tank and his numerous friends (who I have to name in a specific order and if I get one wrong I have to start again) anyway its times like this when im in bed trying to wind down that I remember that Dylan is special and after a few more tears I decide I wouldnt change him for the world, after all he is my world.

  6. Lynn says:

    oh..re the previous posting on dog/horse/elephant…
    dont know if it is possible or of interest, but ,
    years ago spent time at a horse rescue place (they rescued the horses and re homed them)…horses needed love and TLC, nothing major,
    as well
    made a visit to Birds of Prey rescue place..wow volunteers there had done major time with the birds, and amzing results

    both places, to watch kids with the animlas, was “magic”…
    imagine a three foot tall bald eagle calmly standing right beside a kid not much taller…
    imagine a three or four foot tall kid holding a two foot tall Bird of Prey on their arm…
    imagine three or four foot tall kid combing or petting a horse his own height, and then one twice as tall…
    —these places were both run by volunteers, and any kind/any age volunteer were most welcome…as much of the time spent there was making the animal comfortable…so not at all strenuous..
    –if you had any kind of animal rescue place like this within driving distance, might make an interesting visit, or an interesting weekly visit…

    • chris says:

      I still see that I have not convinced you of the merits of keeping an elephant as a pet in a top floor floor of a tower block. I agree that animals to have a great calming effect and we are regular visitors to the local animal farm. I am sure it would be possible to adopt an animal there which would give you extra cuddling rights. However I am not sure you could take it back home to meet the elephant.

      My son who is about the same age as B, joined the Reception Year last year and is now in Year 1. When he started he had just three or four words and now he has an ever expanding vocabulary. When I go to his school I am always greeted by teachers telling me how well he is doing and one even asked for photographs of himself having enjoyment at home (he plays Rugby and goes riding as in horses who are not kept in a flat on the top floor of a tower block). All the TA’s wanted to be assigned to him and were most envious of the lucky one that got the job. There have been no battlers with either the school or LEA to have them meet his needs. They have provided what is needed and got it absolutely right and hence the massive progress. I also have a daughter who has been similarly diagnosed and the story with her is very similar though with different circumstances and set-up.

      Anyway this has got a long way from elephant keeping in the top floor flat of a tower block.

  7. Al says:

    41. That reading a stranger’s blog would help me through the roughest time of my life.
    42. That I am stronger and more resilient then I ever thought I could possibly be.

    (I am older than you!!)

  8. Jo Curphey says:

    Number 26 is the one that gets me. I have lost count of the number of professionals I have come across whose job it is to work with children, and who not only know absoulutely nothing useful about Autism, ADHD, Dyspraxia, etc, etc, but are too arrogant to listen to what I have to say!!

  9. Nice one, B’s Dad. It certainly is an interesting journey that we are on. Number 7 stood out for me… we also battled with this until just recently. Now we can take our boy most places. Onwards and upwards.

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  11. Taro says:

    Thank you,

    I just have my son diagnosed with Autism. Being in a community/county that do not aware/knows about autism is quite difficult.

    Now i know what to expect as a father of an autism kids.

    Thanks.

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  13. janesherwin says:

    Reblogged this on Pathological Demand Avoidance Syndrome and commented:
    I read this and laughed out loud. I love the humor and I relate to so much, especially the bit about wondering who the fat middle aged person staring back at you from the mirror is, this is an absolute must to read. This is pure gold, fantastic !!!!

  14. janesherwin says:

    fantastic, funny, sad, realistic and honest. Whether your child has PDA, Classic Autism or Asperger’s we all go through the same difficulties, obstacles and ignorance. I have really enjoyed reading your post. Thank you for making me smile :-))

  15. lynn says:

    Lovely to read, and as with everyone else I can relate to all of these points.
    Your goals totally change with the diagnosis. You are handed this beautiful perfect baby and think life is going to be so rosy and then the unexpected, but although your goals change they mean so much more when they achieve them.
    Also the comment on friends, totally agree but on closer look, the new friends are more genuine and better people, which speaks for itself when the old ones disappear when you needed them most.
    Thanks for sharing your lovely blog.

  16. Pingback: Forty Things I Didn’t Know Five Years Ago | FC <3 WP

  17. Louise says:

    What a powerful and moving post

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  19. Sarah says:

    Sooo lovely, can totally relate to them all, no.6 i though was beautiful, well done!

  20. April says:

    May I ask a question about No.18? I read this so much, that ‘pre-diagnosis’ friendships wall by the wayside. My son is recently diagnosed with ASD and I am curious why you felt this happened – do you feel your (former) friends pushed you away and that you started to edit them out because of the new distance you found between you? Just wondering as I’m new to this roller-coaster…..
    As a newbie I also want to say what a lifeline your blog has been for me. I only wish you had time to write more : ) !!

    • B's Dad says:

      Hi, sorry for not replying sooner to this- I’ve had some time away from my blog (not out of choice) and have only just found the time to sit down and go through recent comments.
      We have found friendships dwindle over time for a number of reasons. Some are the natural process of getting older and drifting apart- it happens. But having an autistic child has meant we retreated from friendships where there were similar aged children. It was just too painful to see their children develop normally. It still hurts now when I see a chatty two year old- we didn’t have that (second time round). Friends with kids also always wanted to do stuff we could not- craft fairs and so on. We retreated from all that.
      For a period, being an autism parent completely defined how I felt about myself and there was no room in my life for older friends who simply did not have a clue what we were going through.
      This sounds bleak. I am sure it is not an inevitable experience for everyone, so don’t worry. Also, the new friendships and acquaintances that have come into our lives because of autism are highly valued.
      On a personal note, I have made concerted efforts to not be defined by my role as a father. I bought a guitar, joined a class and made some friends. Each week we get together in the back room of a pub to make an awful noise together and I love it.

  21. April says:

    Sorry, meant to write ‘OR’ you started to edit them out…

  22. veeskitchen says:

    Crying after reading this. Praying everyday for autistic children, asking God not to do this anymore to anyone.

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