Lets go running

Is it going to be hard work?

In Autism, Parentingby Sean1 Comment

I wanted to start by saying these this post, this rambling is just my opinion based on the 2 and half years we have had after diagnosis. The thing is, everyone’s experience is different – but I wanted to put something out there that, at least tried, to answer the question that people may ask themselves. With that said, here are my ramblings and my opinion.

I think that one of the first questions or worries someone has after they hear a diagnosis of Autism is

Is it going to be hard work?

I think it’s a perfectly natural though as, at this point, you are wandering into the unknown.

What did we think?

Funny enough, this wasn’t the first question that popped into my head, that was more of a relief that we had a diagnosis and that we knew we would be getting expert guided help on moving our son forward, forward to a point where, hopefully, he can be as much self-sufficient as possible.

Then came the question of how hard this was going to be. As he was not our first child, we realised anyhow just how difficult it was raising children and so really didn’t think too much about the extra time and things we would need to accomplish.

The reality is…

I’m not going to keep you waiting to the end to give you my answer; I’m going to give away the game now.

The reality is, that, we find, it’s not any more difficult raising our son who is diagnosed with ASD that our neurotypical daughter. That said, our daughter is currently being monitored for possible ADHD – they said she has traits of ASD but they thought that it maybe ADHD. So, we are possibly used to a lot more work than we thought we were.

The truth is that every child; every person diagnosed with ASD is individual. They each have their own likes, dislikes, personalities – just like any neurotypical person. For many children who have a diagnosis of ASD, you have to approach things a little different depending on their needs.

For example; you may have heard of a now and next board. So, this is where you put a card with the activity they are doing now and also the activity they are doing next. This way you give an indication to them of what is coming as their next activity. When it’s time, you move the card from the next place to the now and put a different card in the next.

For us, we found that our son is fine with the unpredictable. If we choose to do something next and don’t have the now and next, we tell him and he is fine. This is fine for our son but for another child, this may not be so.

The reality is, all people are different and I know of some neurotypical children that would work well with a now and next board.

From now and next you progress through to things such as visual time tables, PECS and so on. This reality is; that it is more work that a neurotypical child.

You may have read these ramblings and thought “Jeez, that does sound like more work. We have to have this now and next board, remember to update it and so on”. Yes, this can be a lot to take on, but the benefits are that your child will always know what the next activity is and you will find them accepting this more.

What is tough is meltdowns

What can prove difficult is when your child has a meltdown; at least we find this as our son is still non-verbal. For us, we can’t just ask what is wrong. We have to try and work it out.

The truth is that this part of raising a child with ASD is hard work. Its hard work as you have to try and calm them down; have to find out what is the problem and have to deal with those other parents who just think you have a naughty child or are bad parents.

The first few things of calming down; well; you can figure this out as you go. You will get to know what is calming to your child. As to the other parents. I just ignore those that are ignorant to what could be wrong. I often see people staring and I just ignore. If parents say anything I just point out how ignorant they are to what could be wrong. They judge by their situation.

However, you also see a lot of parents who understand and you see accepting looks – looks that they understand and may have gone through the same themselves.

The truth is…

I would not change either of my kids. They are perfect as they are. For use, it was never hard work. Yes, there are extra things you may need to do to aid communication with your child. It’s not hard work though when it comes down to it; it’s parenthood.

Ok. You can never predict when things will change; if things will get harder or easier. i can’t predict what you going to have to go through. I can’t tell you what type of emotional roller coaster you will go though it will probably be different to what we have gone through. But, at the end of the day; we all do the best for our kids and that is certainly not hard work.

How about you?

Have you got an opinion on this? Have you gone through something you want to share? Please do leave a comment below and start the discussion.

 

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Comments

  1. Hi Sean,
    Your comments resonate very strongly with me, reminding me of the saying “If you meet one child with Autism, you have met one child”, they are all different and unique. My son was diagnosed at 3 1/2 years and at that time he was nonverbal. We were told that early childhood intervention was key to his future success.

    He is now 11 1/2 years old, talks his head off, is in 8th grade math class while in 5th grade, his team won the School District Math Olympiad, and he qualified for the State Chess Championships. All great successes for him, but balanced against his struggles with social interactions, lack of empathy, limited perspective taking, and diagnosed with Oppositional Defiance Disorder.

    However, he is an equal member of the family, no more and no less. His twin sister is a normally developing kiddo who has been diagnosed with ADD (attention deficit disorder), who sux at math, zero chess skills, is a wonderful artist, and is a social butterfly. In many ways they complement and help each other with their challenges and interact like most siblings their age.

    One parenting technique we follow that I highly recommend, which is the cornerstone of how we raise our kids is, “Love and Logic”. This is basically the law of natural consequences. As with many (but not all) kids with Autism, my son was VERY literal as a little guy so he understood the link between his actions and natural consequences. So this may be helpful for some.

    He still has his therapies (Behavioral therapies, speech, physical), with no sign of them ending, and there are still many challenges ahead for him and us. But looking back, the early intervention that we were able to get for our son and addressing his needs directly.

    As you note, not treating him as a kid in bubble wrap and not walking on egg shells around him fearing triggering a meltdown or negative reactions from others thinking that we were just bad parents with a willful and disobedient child. Like you, we had to learn how to get to the root of what was driving his actions, and it took time and effort but it made a difference.

    One other thing I would like to note as a critical part of our family, and that is my wife and I being consistent and in step with how we parent. These have allowed him to lead a life thus far that is as fun, challenging, and engaging as any child his age.

    Thanks for the article and evangelizing your efforts on what works for you!

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