Autism Normal

As a parent of a child with Aspergers, I believe in miracles because on ‘good’ days, I get to experience them. You might take a prolonged period of eye contact from your child for granted. But I don’t. For the mother of a child with autism, eye contact is something that rarely happens, as it’s seen as confrontational and intrusive, so when it does happen voluntarily, it completely touches your heart.

You may get frustrated when the loud noise of your children’s rambunctious laughter starts at 3am during a sleepover with friends, when all you want to do is grab a bit of sleep before work the next day. Yet for me, hearing the appropriate laughter at a joke told by peers would be priceless. Traditional Humour is exceptionally hard for an autistic person to understand and often what they find amusing is not shared by others.

Imagine having a child who can not stand to be touched; who flinches from contact. As a parent all you want is to touch them, to hold them, to feel some sense of physical connection to them. It’s why when they do hug you back in a way that is truly reciprocated it brings tears to our eyes and joy to your heart.

Remember those first few months adjusting to a new born? With the sleep deprivation so severe that you discovered that it may be possible to actually die from fatigue? Imagine what it would be like if that never improved. Think about how you would feel if your child got older and yet was not capable of sleeping through the night and awoke with night terrors or decided to make breakfast at 3:30am a few times a week. Imagine never having a full night’s sleep again. When I have the privilege to sleep through the night, I am so grateful in the morning that the first thing I do is Thank God for my blessings.

A child who is on the autism spectrum can often have issues with verbalizing what they want/need/feel and without prompting, can get stuck which leads to overload and then their frustration. Imagine the joy of a parent who receives a spontaneous declaration of love or affection, even frustration or anger, because for us, it simply rarely ever happens. Having basic communication initiated by your child is a miracle.

The milestones you celebrated with your child, because they were reached and then independently mastered, will never happen in the same way for me. The miracle of having a child with autism follow directions the first time they are given, is something that occurs sporadically at best and why it’s so appreciated when it happens.

You passed the milestone of potty training and teaching toileting behaviors to your child, yet for a parent who has a child on the spectrum, a clean trip to the bathroom can become an event worthy of animated celebration. Stress and anxiety can cause accidents as does over excitement or simply being unaware of their bodily functions when distracted. It’s not as easy to deal with when your child is approaching adulthood.

When a person with Aspergers tries a new food that is not preceded by a tantrum and loud vocal complaints, the entire family is excited by it, even when the food was neither appreciated or liked. The miracle lay in all the little things like this that so many take for granted, that we simply can’t, that end up meaning so much to us.

We experience small miracles every single day because we have seen that what most people take for granted, we have had to work so hard for, just to occasionally see a glimpse of it. You may wonder how we do it or how we handle it but the reply for most parents is the same. We do it because we have no choice; we love our children and support them.

As much as we try and as much as we teach them to be independent, we know that many people will not understand the struggle we have faced and the work it’s taken us, to get them to the point where others might see ‘normal’ as we see ‘miracle’. Our vantage point was simply far too different for us to share the same view.

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21 Responses to Autism Normal

  1. Ned's Blog says:

    I nodded my head all the way through this beautifully written perspective. I also stopped to count my blessings that our son, who as you remember also has Asperger’s, has incorporated humor into his life to the degree that he has stopped instantly concluding that any joke that doesn’t come FROM him is aimed AT him. It has taken years to reach that point, and it has changed all our lives.

    And he has changed mine as well. As his “stepfather,” it was a huge adjustment coming to terms with the challenges he faces. However, over time thois moments you speak of — uninitiated affection, eye contact during conversation, trying new foods without meltdowns — has taught me the value and importance of never taking the small things for granted. I thought I was pretty good at that before he came into my life. I’ve learned otherwise — and what it means to truly appreciate the “little” moments and miracles that occur when you least expect it. Which, by no coincidence, are some of the best kind.

    And so are you.

    • rougedmount says:

      suuuuuure make me cry all unexpectedly!..lol..and I totally get the jokes From and At statement…as it’s the same in our life..for the most part..lol..and often times he will ask for clarification now when he feels it’s ‘at’ him. it has reduced tension dramatically

      • Ned's Blog says:

        That recognition is HUGE!! Getting to the point of not just instictively going on the defensive is an important first step for him. That’s fantastic! 🙂

  2. The Woman Invisible says:

    This is so well written, as all your posts are. But this touches home as I am also a mother of a child with Aspergers. I cried when you mentioned eye contact…I thrive on those moments. The laughter too. It’s so hard as a mother to accept The way an Aspie shows love. We are so desperate to have that connection that when it comes it’s like all your Christmases coming at once!
    Thanks so much for sharing.

    • rougedmount says:

      hugs and understanding. my reaction may seem like an over reaction when i he shows his love in a way thats normal for me because it may have been months or years since the last time it happened. it’s hard being a mom..even harder being a mom of a kid with issues…and it makes me grateful for how easy we have it when compared with the trials of others who have far more to deal with than we do.

      • The Woman Invisible says:

        I love the glimmer of light and love….it’s like a little miracle just for me. Hugs back.

  3. georgeforfun says:

    Thanks for sharing a small insight into the life of a family which includes children with Aspergers and Autism. My hat is off to you and the many more Families whose lives are so much more unconventional than many of us will ever know anything about personally. When my children were young, we would help a family with an autistic young boy when his mother had appointments for herself. Sometimes he never said a word but we learned to adapt and not worry or try to force him to interact. After a few years, his family moved. On the morning they left, we were all outside to see them off. Suddenly Jason walked up without a word, grabbed my hand and suddenly said “You’re punny” and walked away. This old Marine broke down like a baby. Miracles exist, yes indeed. Too many of us take our lives for granted, but need to know how blessed we are indeed. TY again for sharing.

  4. ismeisreallyme says:

    Reblogged this on is me is really me and commented:
    beautifully written and relevant in so many ways…

  5. Anonymous says:

    I really don’t know how you manage to hold it all together. You seem such a strong person and yet so feminine. From my male perspective, I can’t imagine being so tough and yet so tender. I suspect only a woman could combine these qualities so naturally. Most XYs and I certainly include myself, would struggle.

  6. I have a son with Asperger’s, so I know some of what you are going through. he’s still “odd.” He still is socially awkward. He still is not mature for his age, BUT it does get better. He’s growing out of it, slowly but surely. He goes to to study engineering in the fall. He’s juggled school (and gets almost straight A’s), marching band, orchestra, and a 30 hour a week job. He’s honest and there isn’t a mean bone in his body. I’m so proud of him. But yes, he still tries our patience at times…but it’s getting better.

    • rougedmount says:

      it’s wonderful to hear when other parents have successful stories when parenting a challenging child. abilities are so very different…and all can be inspiring.

  7. I also have a daughter on the spectrum and applaud your strength. Even more so I applaud your ongoing ability to love and ability to retain your humanity. Most would be surprised to learn how often that isn’t the case.

    • rougedmount says:

      … thank you for that. as you know, there are times when living on the emotional edge can take it’s tole. i use humor as a hand hold when i am slipping into the precipice. i am my own worst enemy and was highly critical of myself in relation to this child at times. accepting him for who he is, sounds so simple, but the reality is, it’s not. Once you can accept the lack of control, it helps to guide you towards the things you ‘can’ manage…like your reaction to everything…as you can guarantee there WILL be something to react to. Predictable Chaos has it’s own incredible beauty and if it worked for the Universe…it can work for my family.

  8. I will be reposting this soon, if you don’t mind. My son has Aspergers and while he is high functioning it is no less difficult. I teared up reading this because, gosh those moments are so far in between but they are worth it. xxx

    • rougedmount says:

      mine is as well…and while i am grateful he is, i have often thought that if he wasn’t, that if he were just a bit more obviously disabled or autistic, but not TOO much, people might understand him better. I’ve been ungrateful. I try to remember my blessings and his. But it is not easy. It is brutal at times. People like ‘us’ feel alone…and so burdened..that it becomes normal…until we are away from it…and then it shocks us at what we endured and survived

      • It’s difficult when it comes to explaining it to people we know. I’ve been told that he is just spoiled (which he is not) or that we don’t discipline him well enough (also untrue) because some people don’t accept his diagnosis. I don’t use it against him, but I eventually had to admit to myself that it does affect him and sometimes I wish others could understand that. It’s frustrating when people give their opinions without understanding the bigger picture, especially when it is friends and family members who know what the deal is. I feel like I spend more time defending us than anything else. xxx

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