Drowning under my senses

Having heard about Paddy McGuiness and his wife Christine’s heartbreak, over their four-year-old twins’ Autism diagnosis recently, I wanted to write about it because I not only feel sad, but I can also resonate.

I can draw parallels with them through my Sensory Processing Disorder (“SPD”). I understand why each day is a battle because it’s the same struggles brought forward into a new day, that never leaves you, that can flare up at any moment. It’s often difficult to escape the feeling of hopelessness, helplessness, knowing things can never change that life will never be normal.

When my senses are out of control, I too feel like I’m drowning under the strain and stress. Not being able to rationale, or find a resolve on something that seems quite straight forward to us, can leave us isolated. The feeling of panic, fear, anxiety, the not knowing how to deal with the issue.

I am pleased they have an early diagnosis for their children because that will make all the difference. Together with their positive approach, parenting skills and united attitude will help them become even stronger. Although this wasn’t and isn’t my life, it does make a difference when parents’ and families support. Unlike my exposure, their children will be less exposed and their lives made so much easier.

Any disability can seem dark and daunting, particularly when every day is a struggle and there is no respite on what we deal with. Where Paddy McGuiness says: ‘some days, it feels like you’re slowly drowning. It’s like you’re under water desperately swimming up to get oxygen but never getting there.’ I can resonate with that totally.

Turning to Paddy’s beautiful children, life may seem like an uphill battle, but with loving parents by their side, their children will have all the help they need. That sadly, wasn’t my life.

Today’s blog is dedicated to the McGuiness family.

27 Jul, 2017

4 thoughts on “Drowning under my senses

  1. Oh wow! You know, Ilana, I could go on and on about this subject. I don’t know the story of this family, I’ll have to check it out somehow though.

    For those reading this comment that don’t know my situation, our adopted son (he’s our son in every aspect) has ‘ASD’ (autism spectrum disorder) and ‘SPD’ (sensory processing disorder) among a lot of other mental and physical disorders.

    It is very hard sometimes to understand what he needs. Mentally he is about 4 years old, but when it comes to school work and academics he is basically on task as a nine year-old, which he is. I think a lot of his actions are sensory related, like obsessing on something, but then again that is a symptom of Autism.

    The sensory issues did show before the Autism. I think he is at the point that he wonders what to do and gets agitated, I think, when he doesn’t understand us. He also self-regulates. Like if he has been over stimulated, he’ll stop what he is doing and jump up and down and spin in circles without getting dizzy. We call it re-setting.

    I’ve been around him the longest (I was his nurse for 3 years before we adopted him) so I understand him a little better, and he is very attached to me. Our biggest struggle is with the Government. For example, he needs a type of feeding therapy to teach him to chew, so he will be able to eat normally.

    His problem is behavioral related. The cost of the therapy is too much for us to be able to afford, and his insurance won’t pay for it at all.

    There are so many aspects to parenting a child with Autism to consider and it is hard for others to understand, especially when you’re out in public and they have a melt-down and you do everything to help him, to no avail and others are looking at you like your crazy cause you can’t control him.

    I could go on and on, but I’ll stop here. We love our son very much, just as much as our other children.

    1. Thanks Lisa. It’s always great to hear stories like this one. Yours too, but unless someone walks in our shoes they can never really know what we deal with. That’s both the point and problem. The sad reality is that as children age, so too do their problems.

      In my own case, as a child I didn’t know what my physical and emotional issues were, around my neurological issues, it didn’t stop me going through the struggle stage. I understand now why I held on to things. I still struggle now, but I am expected to cope because I am the adult.

      I believe that you being your son’s nurse Lisa, should help you understand a little better, more than if you hadn’t been his nurse and you just adopted him. Hopefully your nursing skills will help you parent your son.

      I agree that going out with a child who has difficulties like your son, can be difficult as you suggest, but sometimes you have to weigh up the pros and cons and balance that out.

      All you can do is what you can do Lisa. Just do as you do, your best.

  2. I hear the sentiments you mention here on a daily basis. Early diagnosis and treatment is key to understanding and arming kiddos and families with tools for success.

    It’s unfortunate how often neuro-developmental diagnoses are misunderstood by others. Community education is also necessary to promote understanding and acceptance of people’s differences on any level.

    1. Thanks LeAnna. Ditto on your thoughts. Yes, we’re given a diagnosis, but Consultants don’t go into too much detail about the neuro-developmental issues. Those are my experiences.

      Given the fact that brain damage presents differently in all of us through the Cerebral Palsy scenario, it’s not surprising, but for those of us dealing with neurological issues, not knowing how those present leaves us with so many unanswered questions.

      As you say our neuro-developmental diagnoses are misunderstood by others and that isn’t easy.

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