Guest Post : Autism – Who wants to be normal anyway?

Autism. A word used to describe a common disability but who wants to be normal anyway?

Autism. A word used to describe a common disability. A word which comes along with false sympathy, pity and comments of “how do you cope” and “I bet life is hard!”. Damn straight its hard, being a mummy is the single most challenging thing a woman can become. My reality is I have two amazing little boys whom I owe my life to.

The Beginning

Our journey began in 2012 when we were blessed with the tiny bundle that is Freddie. Quickly we fell into a routine. “Routine makes it all easier!”
Little did I know these routines would be forever stuck with us and deviation is the cause for a full on emotional break down. Freddie developed well, barring his speech took a while to be comprehensible. Everything was going well. Fast forward twenty months and the miracle that is Harry had arrived. A content quiet boy.

Freddie started pre-school at two, my alarm bells were ringing that there was something not quite right. That maybe his outbursts weren’t just a typical sign of defiance and the terrible two’s. I then started to notice smaller things, walking around the same area picking up flowers on the daily visit to his pre-school along with other little rituals and his genuine struggle with new occurrences or experiences. Emotions not being read how most people would recognise them or displayed effectively. Head butts done on purpose onto hard objects, starting with doors until eventually leading to harming himself by banging his head onto concrete floors. This then changed to biting his own wrists. Surely this wasn’t normal? A review with his key workers expressed that they shared my concerns. Two years later after endless assessments and paediatric appointments we had a diagnosis. Autism Spectrum Disorder.

During Freddie’s assessments, Harry’s behaviour concerned me. Super late walker, rocking and hand flapping, a disdain to anything wet to the point his gag reflex reacts. Most importantly, at 2 years old, zero speech. We’re still in the process of having the letters ASD added onto his medical records and since then other habits have developed.

Daily Life

Our day generally starts rigidly, usually by the happy cooing of Harry in a song like manner, it goes on to them having the same foods daily and their dose of vitamins to help them not be deficient because they are so self-restrictive diet wise. A trip to nursery and preschool after of course the dreaded preparation for going out using a visual time table to show them what’s coming. We don’t do surprises!  Freddie spends his day with the one or two friends that he has managed to muddle his way into making – social skills are somewhat of an issue for him! Harry usually spends his with his one to one staff member rocking and flapping, separated from others paying little interest into what is going on around him. Makaton, PECS and weekly portage visits seem to take over our lives!

Next up: bedtime!

Sleep is not even a thing I vaguely remember! We have a very strict bedtime routine: dinner, play, bath, The Gruffalo usually read twice and bed. Most nights Harry drops eventually on the floor where he’s made his own little camp, usually just after smearing a nice shitty nappy everywhere for me! Cue the second bath of the night, whilst Freddie rambles away running around attempting to tip furniture. Eventually they drop and I’m drained ready to slump into bed all to do the same things, at the same time the next day!

The Future 

My main concerns are how Freddie hurts himself. Every time he bites his tiny wrist in frustration or anger or sadness he leaves trace. A small bruise. As a mummy, your child being hurt is not something that you want to see. I wish I could somehow help him to display what he’s needing to without the self-punishment.

Harry’s worries are separate. I worry that this little boy who is beautiful, but completely oblivious to the world around him will be swallowed up and forgotten.Will either of them find that special someone and move out and ultimately grow up. What will happen to them when I’m gone. Who will take care of them?

I so badly want to hear those three insignificant words which others take for granted, come from Harry’s mouth; “I love you.”

Yes, they’re a handful, yes, my life is hard; would I change it? Not even for a second! Who wants to be normal anyway?

Autism. A word used to describe a common disability but who wants to be normal anyway?

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  1. March 27, 2017 / 7:21 am

    Thanks for sharing this post, it’s really interesting to get a better understanding of autism and how it affects daily life. Thanks for joining us for #marvmondays x

    • Samantha Crookes
      March 27, 2017 / 7:00 pm

      Glad you enjoyed my post! Thank you for your lovely comments ❤

  2. March 27, 2017 / 12:17 pm

    Who wants to be normal anyway? Exactly! My daughter isn’t autistic, but she’s never behaved like other children her age – she is more restless, more defiant, more ‘difficult’. But I’d never want her to change – with a strong personality, things are never boring! #MarvMondays

    • Samantha Crookes
      March 27, 2017 / 7:05 pm

      Certainly no boredom in my house haha! Thank you for taking the time to comment on my post. Personally I don’t think it’s the children that’s the issue, it’s the judgemental adults that are! I hope she continues to have a larger than life personality and I’m sure she’ll head onto amazing things ❤

  3. March 27, 2017 / 4:19 pm

    My friend also has two boys who both have autism (well she’s in the process of getting her youngest diagnosed) and I often think how incredible she is and how lucky the boys are. I think the same rings true here. My brother had autism and life was difficult for my parents but they would never change a second. Thanks for linking up to #MarvMondays. Kaye xo

    • Samantha Crookes
      March 27, 2017 / 7:03 pm

      This is my guest blog. Thank you for your kind words! Us mummy’s are just as lucky as the children and I agree I’ll take the good bad and the ugly any day over changing them. ❤

  4. March 27, 2017 / 5:09 pm

    Hi lovely I’ve just written a post about chewing as my son is a chewer/biter. He used t suck Hun own skin leaving a kind of love bite. We use chew buddies and that helped you can get ones on a quick release necklace or bracket ones. Hope that helps ?

    • Samantha Crookes
      March 27, 2017 / 7:02 pm

      Thank you for your advice! Unfortunately we haven’t had success with the chew buddies but just because it doesn’t work for us doesn’t mean it won’t work for others. ❤

  5. March 28, 2017 / 7:25 am

    Thank you for letting us have an insight into your day. It sounds tough but you sound strong, and I can see you will continue to be strong for them, fighting for their opportunities. #marvmondays

    • Samantha Crookes
      March 28, 2017 / 9:05 am

      Thank you for your lovely comments! ❤

  6. March 28, 2017 / 4:37 pm

    I love your positivity! And who does want to be normal, it’s overrated! #DreamTeam

    • Samantha Crookes
      March 28, 2017 / 4:41 pm

      Thanks ever so much! Have to be positive about things don’t you ❤

  7. March 28, 2017 / 8:45 pm

    Normal is very over rated in my humble opinion. The future is a very difficult thing to contemplate when you have a child with different needs but as someone who works with adults with learning disablities I can say that (despite the government funding cuts) services are getting better, more person focussed and far far less instititionalised. The future might not be ‘normal’ but it can be positive x #marvmondays

    • Samantha Crookes
      March 28, 2017 / 9:44 pm

      Thank you for taking the time to comment! Good to know that things are getting better and it’s not all doom and gloom ❤

  8. March 28, 2017 / 9:12 pm

    You do an amazing job! It must be hard but it’s your normal and I guess you just do it! Love the picture of them at the end and thanks for sharing more about autism. xx #twinklytuesday

    • Samantha Crookes
      March 28, 2017 / 9:47 pm

      Thank you! Lovely photo one of the rare ones of them together! Glad you enjoyed the post ❤

  9. March 30, 2017 / 8:44 am

    Such an eye opening and honest post. Thank you for sharing. With such a caring Mother, your boys are going have the very best of support, love and guidance xx #bloggersclubuk

    • Samantha Crookes
      March 30, 2017 / 10:46 am

      Aw thank you so much! Thank you for taking the time to read and comment glad you enjoyed it. ❤

  10. March 30, 2017 / 1:48 pm

    Oh this tore at my heart strings – my daughter has complex developmental needs too, and I often have to stop my mind from worrying about her future – who will care for her, what will she become, what will she have to endure. It sounds awful to have to watch your son biting himself. The poor thing.

    It sounds like they have a fab mummy who is going to get them through this, though, and it will make such a difference to them. You can see the love you have for them jumping out of the page! #ablogginggoodtime

    • Samantha Crookes
      March 30, 2017 / 1:56 pm

      Thank you so much for your lovely comments and taking the time out to read my post. Qudos to you as well mamma for helping either your daughter! I wish you both all the best for the future ❤

  11. March 30, 2017 / 4:18 pm

    My friend has just spent the last 6 months getting her son diagnosed and I admire how she has got to this stage. Her son sounds very similar to Freddie. Thank you for sharing a lovely post and Thank you for joining us at #SharingtheBlogLove

    • Samantha Crookes
      March 30, 2017 / 4:27 pm

      6 months sounds very quick which is amazing for your friend but most importantly for your friends little boy. I hope that they are now getting the support they need! Thank you for taking the time to read my post ❤

  12. March 30, 2017 / 5:34 pm

    Such a beautiful post. My sister in law has been fighting for a diagnosis for years and finally got it last year when her son was already 7, it’s so wrong that it should be such a hard battle. Sounds like you are an amazing mummy to beautiful little boys x

    • Samantha Crookes
      March 30, 2017 / 5:38 pm

      Thank you so much! Unfortunately children’s mental health services are extremely difficult to deal with and even then when you have a diagnosis my experience with Freddie was being handed a folder of leaflets along with a discharge from CAHMS. I’m pleased your sister in laws little boy has finally been given the diagnosis though! ❤

  13. March 30, 2017 / 7:42 pm

    My eldest son has Sensory Processing Disorder & High Functioning Autism and I can relate to so many things in your post. You’re totally right though, who wants to be normal?! #MarvMondays

    • Samantha Crookes
      March 31, 2017 / 8:11 am

      Thank you. Lots of love to you and your little man ❤

  14. March 30, 2017 / 9:44 pm

    What a beautifully written and engaging post. I love your end comment – ‘who wants to be normal anyway?’. Exactly! They are a beautiful pair of boys and obviously bring you such joy. I know you don’t want sympathy but your bedtime routine sounds bloody hard – hats off to you with that. xxxxx #ablogginggoodtime xx

    • Samantha Crookes
      March 31, 2017 / 8:12 am

      Thank you for your lovely comments! Bed times are the hardest I think! ❤

  15. March 30, 2017 / 10:20 pm

    My youngest brother is on the spectrum. He is nearly 16 now, so the daily challenges are a little different now. I cared for him for a long time when he was smaller (there’s a big age gap!) and for pretty much all of his life I have told anyone who would listen that he unquestionably one of the most amazing people I have ever had the pleasure to know. yes, he can be ‘difficult’, yes there are challenges, but he is just fantastic at the same time. the black and white nature of his personality means that he loves unconditionally (even if that’s sometimes hard to see) and his sense of humour is just perfect! Loved reading this post! #ablogginggoodtime

    • Samantha Crookes
      March 31, 2017 / 8:15 am

      Your brother sounds perfect bless him! Love is something I get in bucket loads from my two I totally understand what you mean. Thank you for reading ❤

  16. March 31, 2017 / 12:52 pm

    Thank you for sharing this with us – it is so insightful and a very enlightening read. #BloggerClubUK

    • Samantha Crookes
      March 31, 2017 / 3:38 pm

      Thank you glad you enjoyed ❤

  17. March 31, 2017 / 2:28 pm

    You sound like an amazing mum to your two boys – it’s clear you’re doing a great job! I often wondered when my son was younger whether he might be autistic, as he did have more than a few of the indicators, but as he’s grown up I can see that I don’t think that’s the case – he’s just his own kind of different. And you’re spot on, I wouldn’t change him for the world! Thank you for joining us at #SharingtheBlogLove

    • Samantha Crookes
      March 31, 2017 / 3:37 pm

      Thank you so much for your lovely comments and taking the time to read my post ❤

  18. March 31, 2017 / 11:25 pm

    Popping back again from #sharingthebloglove

  19. April 1, 2017 / 3:51 pm

    This really got me… my little man is two and a half and we too are subject to endless partake visits, speech and language therapy, paediatrician appointments and so on… we are at the stage of genetics and blood testing to rule anything out as, even though he shows some sever signs of ASD he also shows some completely opposite of those thought to be a-typical of Autism. I am too SO ready to hear him say ‘I love you’… or even just ‘Mama’ or ‘Mummy’… my heart may explode when/if he finally does! #ablogginggoodtime

    • Samantha Crookes
      April 1, 2017 / 4:11 pm

      Don’t give up hope! I literally had Harry’s genetics results last week after an awful wait. Everything was normal for us so now we have to press on with the ASD side of things. Freddie’s were luckily normal as well. I hope all goes well for you and your little man. Sounds strange but even though he can’t say I love you I see the love in his eyes when I can engage him. Keep battling through and lots of love ❤

  20. April 2, 2017 / 9:43 am

    Such an insightful post about life with autism. They are beautiful boys. Thanks for linking up with #TwinklyTuesday

    • Samantha Crookes
      April 2, 2017 / 9:58 am

      Thank you for your lovely comments ❤

  21. April 2, 2017 / 7:54 pm

    Thank you for sharing such a beautifully honest insight into autism and the day to day challenges that it brings. Your boys are gorgeous, and your love, dedication and pride in them both really shines through in your writing. Thanks for linking up with us at #DreamTeam x

    • Samantha Crookes
      April 2, 2017 / 8:48 pm

      Thank you so much! I’m overwhelmed by the response this post has had I didn’t think it woild reach as many people. Massively underestimated the power of blogging haha! I’m glad you enjoyed it! Xxx

  22. April 3, 2017 / 10:41 am

    Your boys are beautiful. Austism is not so beautiful but it doesn’t change your love for your child. My autistic children are 11 yrs and 29 yrs old.

    • Samantha Crookes
      April 3, 2017 / 10:01 pm

      Thank you so much! Love to you and your boys ❤

  23. April 5, 2017 / 1:18 pm

    What an insightful post. I know next to nothing about autism but youve opened up this world to me a little more. #bloggerclubuk

    • Samantha Crookes
      April 5, 2017 / 1:51 pm

      Thank you for reading! I’m glad it’s helped you to understand it a little better. Ultimately my goal with this was to attempt to get it to reach someone who wasn’t fully aware of autism so job done! ❤

  24. April 7, 2017 / 10:35 am

    This is such a truly beautiful post. I remember in the early days of Number One’s diagnosis, have so many worries about her future. Now she is nine, I look back and wonder with amazement how far she has come. Sending much love to all of you from a mummy who understands only too well how hard some days can be x

    • Samantha Crookes
      April 7, 2017 / 7:24 pm

      Thank you so much! Your kind words are appreciated! My two amaze me so much as well with the progress that they have managed to make, especially recently. Lots of love to you and your little girl ❤

  25. April 9, 2017 / 8:28 pm

    Life would be very dull if we just had normal. Your boys sound like hand full but blessing i am sure . Thanks for sharing #postsfromtheheart

  26. Samantha Crookes
    April 10, 2017 / 11:01 am

    Thank you for reading ❤

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