Autism Parenting: The End Of An Era

2012-09-24 23.02.15

Three nights ago, I made the excruciating decision to kick my children out of bed. My bed, that is.

To give a bit of background, my kids have always had full and free access to me, at any time of the day or night. When they have woken up in the middle of the night having had a bad dream, or feeling sick or lonely, they have been allowed to get into bed with me and snuggle up. It’s not always comfortable, being squished on both sides by children, but I have always loved it. Because what is better than hugs from your children?

As much as I love it, though, there are downsides. For one thing, my children take up an inordinate amount of space in the bed for such small people. It’s like they morph into starfish at night, and there are arms and legs everywhere, squashing my face and poking into my spine. For another thing, these little people are getting less little. George, who is ten, has reached the same height as my mother-in-law (OK, so she’s a little old lady, but still), and eight-year-old James is getting there as well.

What this means is that these nocturnal cuddles are costing me an enormous amount of sleep, and that makes it difficult for me to both function and be a human being that other people want to be around. In addition to that, George has started showing signs of puberty, and my husband and I have been feeling the need to carve out more time with each other.

We have reluctantly agreed that it is time for the kids to stay in their own beds at night.

James has accepted this with ease, but for George it is a massive change. Kids with autism do not appreciate it when the boat is rocked, and this particular change represents a tidal wave for him. It has been difficult for him, and by extension, difficult for us.

For the first two nights, James was the only person who got any sleep. My husband and I would lie helplessly in our bed, listening to George’s plaintive pleadings. He kept wandering into our room, and I kept taking him back to his own bed. I would get him settled, tuck him in and give him a kiss, and then go back to bed. And then I would do it again. And again, and again, and again.

While all of this was going on, George was whimpering, “I want Mommy. Lie down with Mommy in the bed.” And then, as he got sadder and sadder, he was simply calling my name.

I so badly wanted to cave. I so badly wanted to go to him, lie down with him and wrap my arms around him. But I knew that I couldn’t. In order to make this change, we would have to be persistent and patient, gentle and firm. We would have to just lie in bed and listen to our child being sad.


Last night – the third night – we caught a break. George went to sleep in his own bed, and he stayed there for the whole night. There was not so much as a whimper, not the slightest bit of movement. As much as I like to think that this represented an acceptance of the changes, I am realistic enough to know that the poor child was probably just too exhausted to protest. We may be in for another few nights of sleeplessness, and we will deal with it for as long as we need to.

As parents, it is our responsibility to guide our children towards independence, and this is an important step in that direction, even if, at the end of the day, it is harder for me than it is for them.

This is an original post by Kirsten Doyle. Photo credit to the author.



GUEST POST: Talking About Bulbs

Today we wrap up what’s been a great week of guest posts. So far we have heard from an autism parent, a woman embarking on a weight-loss journey, a mom who suffers from mental illness, and  an Asperger mom who runs. Today’s post comes to us all the way from Spain. Gati Presumida, like my guest writer yesterday, participated in the Health Activist Writers Month challenge. She has Lupus – a condition I knew nothing about until I started reading her blog. She’s not talking about her Lupus today, though. She is talking about her father’s battle with dementia.

Yes, bulbs.

Light bulbs.

You are not crazy. You read that.

I am not crazy. I wrote that.

And, as per mental health, no one is ever crazy.

Because, as crazy as it may sound, talking about bulbs for an hour was the thing that made my yesterday complete.

By the time you finish reading these lines I only hope you can agree with me on this: talking about bulbs can be the greatest thing ever.

My dad suffers a condition called Frontotemporal Dementia. Although God only knows when it started, he was diagnosed 4 years ago, when it was too late for many things.

Dementia has altered our life in such ways that you cannot imagine. However I am not going to tell you another of my “soap operas” today.

I would like you to see what I see. I would love to give you the key of perspective so that you can see how talking about bulbs can make your day.

My dad’s dementia has forced him retire 10 years earlier than what he planned. He is not allowed to have any money nor credit cards or bank accounts and whenever he goes out he gets 1000 questions afterwards so that my mum can be sure he hasn’t done any “crazy” thing like buying a new car or getting a loan on my behalf.

Although my dad can walk he feels under so much  control that he feels house bound.

He gets told off whenever he tries to help and does something. He feels useless and that’s unfair because he may have dementia, but dementia does not have him… yet.

Maybe next year things are different. But nowadays he can do so many good things! And he, nor anyone, should never feel useless.

You see my dad and see a “crazy” person you should not trust. But I see a person that is trying to fight. He knows dementia is meant to have him, but he knows it is up to him to slow the process down.

I know he can do it. That is why I bought him a e-book so that he can train his mind by reading. I ask him for help whenever I need. Not because I pity him, but because I really think he can help me. He is so wise and so capable of doing things and everything. He is worth more than anything to me.

Yesterday I sent him an e-mail asking for help. Do you want to know what he replied? “It comforts me that you think I am capable of doing anything”. It breaks my heart.

He would tell me things like “I am glad you don’t think I am crazy” every time we have a chat.

If I had an idol that would be my dad. Only because I know I would not be able to cope with dementia in the way he does.

Although he sometimes has moments in which he forget things or he does things he should not do without realizing (like buying a car), most of the time he is fully aware of his situation. He knows he is doomed to be defeated by dementia and yet he is fighting. To be honest, had I been in that situation, I would have never tried to fight. And he does. Every single day.

He fights dementia. He fights to show people he can do so many things, and that he can do them right. He really fights to show the world he is still capable of doing things.

People say my dad is crazy. That Dementia is getting worse… Just because somehow he bought a new car. While others see this as an act of dementia I see a gesture of guilt and gratitude. Because he buys that car for my brother as a way to say “thank you for giving up your life, your family, your job and everything to help me out”. I now guilt can be stronger than anything.

I constantly hear “your dad has one of those bad days” just because he forget things. I forget things all the time! Oh, so he is worse today because he doesn’t know which day it is? I rarely know what day is today! What for? My everyday is the same, so why should I bother about what day it is? I am happy being clueless about if it is Monday or Friday because whenever I got something important coming up I set an alarm to not forget. My dad does the same.

My dad’s dementia has got worse because he rumbled about bulbs for like an hour yesterday.

Really? Have you thought about his life?

He has no job, he is not allowed to do anything on his own… He feels house bound like I am.

To tell you the truth, I have one million Ph.D on stupid things. It is what you do when you have nothing to do and the internet is your only window to freedom. So, yes, if that day you need to look for an energy equivalence table in order to get a new bulb, you may take the chance and “surf” a bit deeper into the matter. Well, do you have anything better to do that day?

Oh, so you think you do? Maybe, if it is only one house bound day. But when you are in that cage for 4 years… What now?

Well, there you have it. Bulbs are great thing to get a Ph.D on. It is just a matter of perspective.

Dementia has given my family many reasons to be sad and worried about, but every time we have a family get together you only hear laughter, jokes and that funny teasing that my family knows to do so well. I love that. I treasure each one of those moments.

Maybe during those family get together you see my dad’s upset face at some point. You would probably think it is one of his dementia black-out moments.

I don’t see that. I see guilt and sorrow for having destroyed so many things, for having taken his kid’s lifes away without realizing. I know he wonders how he could not see all that coming…

My dad gets to my mums nerves if he talks about bulbs for an hour. Don’t judge her because we may not know what it is like to be 24/7 with a person like my dad. Like many parents that lose their nerve and smack their kids with apparently no reason, my mum probable loses her nerve. Dementia has altered her whole life, so I guess she deserves the right to lose her patience from time to time.

Light bulbs are not a crazy thing to talk about. I love, I treasure, each one of those “crazy” conversations. Firstly, because I don’t think it’s crazy. I understand my dad and each one of his sudden interests.

I love talking bout bulbs because it is my dad I am having that conversation with.

I will always be up for another bulb chat because I don’t know when that will finish and when dementia will have my dad. Because today he knows who I am, but I don’t know when that will come to an end. So, yes, I am number 1 fan of bulb chats.

You may think that my dad is crazy. I don’t. I see it from another point of view. I only wish people did the same. Not only for my dad, but with many other people that, alike him, have a mental issue.

As you see, Mental Health, from my point of view, is a matter of perspective. So why don’t you give it a go? I am sure you will get surprised by how things can change just with a tiny bit of perspective.

Don’t let yourself get carried away by words like dementia, bipolar or depression. Don’t focus on the wording but on the person you are talking to.

From a different perspective I am sure you will see so many things that were hidden behind those names.

Take this key of perspective I am handling to you today and I am sure you will also tell others how an hour bulb chat made your day.

To learn more about Gati Presumida, check out her website!

(Photo credit: This picture has a creative commons attribution license.)