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Autism: Autistic Parents

The question was:  What are the pros and cons of autistic people having children.

The pros and cons are likely different for each of us, as they are for NTs.

I had a son (at age 19 years 6 months 1 day.) I also ran a daycare for several years, and tried to adopt through child welfare (had the children in my home for 3 years, but never got finalization, and the adoption failed.)

Some pros: Good at maintaining a routine.

Good at making/keeping appointments.

Good with structured activities (reading, singing, crafts, games, cooking, etc.)

Good at teaching.

Read to my son every day (often many times a day) from birth until right before his 14th birthday.

Understood HIS struggles better than most people could, even though we are very different people.

Research! Whatever I am interested in, I research – which, when my son was little, was children. I researched so deeply that when I took my Early Childhood Education at college (when my son was 2–4 years old) everything was review, and I graduated with dean’s honours.

I took my son to playgroup, to the park a lot, to the children’s museum… I put him in soccer, swimming, cubs, youth group, had birthday parties (and I have severe social phobia, and parties are especially hard.) I made an effort like most parents do – and I absolutely loved/love all of my children.

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Some cons: It is very difficult for me to communicate well (especially long term) with other adults. I become more anxious as time goes by, which causes people to stop trusting me (I don’t trust others, with good reason.) This had a lot to do with our adoption failure (I wasn’t diagnosed until after – and it is likely they wouldn’t have allowed me to try to adopt if they knew, though I very much disagree with that.)

I research a lot, and write a lot – which overwhelmed other adults trying to work with our family (again in adoption.)

When I get overwhelmed, I shut down – like when my son was born, I was in shock for a couple of weeks. I took care of him, but couldn’t think or focus well. I could have used a lot more help there.

I get overwhelmed easily, and don’t do well at all without sleep. I could have used some help there (my son didn’t sleep more than 20 minutes at a time for his first year.) Many new parents are exhausted. Autistic people might need a lot more support to be able to cope well.

I get overwhelmed easily (I know I am repeating, but this is the struggle.) So when we had 3 high needs foster kids, plus my undiagnosed autistic son, plus myself – I could maintain OUR schedule most of the time so none of us were falling apart, but then we would have the social workers step in and ask to do several things at once because it was more convenient for them – we would all end up falling apart after. Too many appointments at once, people not understanding our need for routine (which is good for children) can cause failure. It is a con. This is on me, I see that – but some understanding in this could make all the difference between success and failure. Again – support. Someone else to deal with an overabundance of appointments/understanding to ensure not too much is asked at once…

When I am overwhelmed, I can’t do everything. I could take care of my child, but for a long time could not keep my apartment clean at the same time. Later I could take care of my home and child, but having to work on top of that was too much. Too many appointments = too much. A lot of life is “too much.” Extra help and supports are often needed for success – as well as understanding that we can’t do it all, though many parents are expected to.

Social skills. Likely someone else will be needed in the child’s life to deal with important social events. As I mentioned, I took my children to a lot of activities – in my mind. The social workers said I was isolating them. I still don’t understand that as we went out a lot – and the summer they said that, I drove across the country, and took my children to visit a lot of family, and go on a lot of outings. I wasn’t diagnosed at the time – if I had been, I might have accepted that I have a ‘blind spot’ in this area. Having someone else to plan birthday parties, play dates, help communicate with teachers and specialists, etc. would be important for the children, and helpful for an autistic parent (so as not to overwhelm them.)

Sensory issues. I have a lot, and many surround smells and foods – especially foods. Personally I could deal with changing messy diapers. I got really fast at this with the daycare, and would NEVER leave a child in a mess – but that is because I am hypersensitive. Someone who is not so sensitive might need help in keeping the children clean. For foods, there are many I can’t have around me (boxed Kraft Dinner – generic included, mushrooms, hamburger, eggs – I am allergic…) For children to have some of these experiences, it would need to be apart from me. That doesn’t mean I couldn’t be a good parent.

Fixations. Rules. Okay… especially when anxious (made worse by judgmental people who don’t understand) I have a really hard time being flexible around rules. For instance, when our children were placed with us, they had very strong attachment issues. We were told not to let other people watch our children, or give them anything (toys, food, etc.) for at least 6 months to allow the children time to settle. So that is what I did – and everyone got upset with me.

Or there is the fact that I can see connections that other people don’t. When my children had sugar, for instance, I could feel it coming off them in waves – even if no one told me they gave it to them. Sugar strongly affected their behaviour, and made things harder, so I didn’t give them sugar. Ever. The same goes for wheat (not gluten, just wheat.) I sweetened with applesauce, or rice syrup, or something. I gave them other grains – rice, millet, chickpea, quinoa… but NEVER wheat.

I got in lots of trouble for that, and others saw it as being rigid and controlling. Perhaps it was – but… understanding and support can go a long way. Understanding that many autistic people can see patterns and connections that other people are unaware of (so don’t dismiss what we are experiencing even if you don’t see it.) I requested a dietitian. Some understanding and support could have gone a long way in getting all of us through this – whether we ended up giving the children sugar and/or wheat, or they provided better alternatives. We (autistic people) tend to get ‘stuck’ in our rules. We see why they are there, and the more attacked we feel, the more ‘stuck’ we get.

It might take more outside support, and a lot more understanding for Autistic parents to succeed – but we can do very well as parents (even thrive) with the right supports and understanding. In fact, being a parent was the single most fulfilling experience of my life – and losing my children through adoption failure the single most traumatic.

In conclusion I believe people with autism can make excellent parents – with good supports and understanding in place – and having children can be such a positive, growing experience for (some) autistic people that I believe it is tragic to deny (us) that experience rather than provide the supports needed for us to succeed.

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Autism: Unwanted Dreams

As thoughts of my children overwhelm me, there is a sadness which catches within and threatens me with memories and fears of despair. My heart and soul long for their return even now, though they have been gone eight long years.

I woke up with the song “God is Awesome,” running through my head. “… there is power here for miracles to set the captives free and make the broken whole…” I am broken. I was broken before my children were taken that day, but in that moment I was shattered.

The thought of my children returning fills my mind with dreams of a future; an expansion of my heart and life where all other ‘dreams’ are of shelter, isolation, retreat. I still want to learn such things, and still think they are ‘good’ things to do – but in my children I see ‘life’ and ‘purpose.’ I see ‘future’ and ‘hope.’ And while I worry about the transition for my son that was left with us, I also see that my fears of him being alone, and even for his faith, have their answer in this.

But what is the point? This dream is a fantasy on par with my desire for teleportation and wishes that come true. It won’t happen – and this hope? It fills me with life and joy for a moment, and crashes in despair in the realization that it won’t ever happen.

The ministry would never come seeking us to take our children home – they neither saw the children as ‘ours’ (since we never had finalization on the adoption and weren’t related by blood) nor did they see us during that last year with us as a decent answer for the children.

And why would the children want us? They are settled where they are, even if it is foster care, and the girls wouldn’t even remember us, they were so young. Besides… what have I to offer them?

So the dream that shows me a life full of purpose, and healing in my heart, mind, and marriage, turns to despair as I admit to myself that it is impossible. And my heart breaks as I feel myself losing my children all over again. And again the loss threatens my sanity for there has been far too much of it.

The thought came strong after hearing the apology from my sister in law – for until that night I would have said that was more impossible than having my children returned to us, but it came. Unexpectedly, and unsought, it came. And I thought, if God could orchestrate that, having my children returned to me couldn’t be so hard.

And I allowed the thought. I fixated on it for days.

But dreams… in my life, dreams don’t come true.

And the pain that comes crashing over me when I realize again that the loss was forever… it destroys me. It shatters me all over again, and I wasn’t even healed from the first time.

I guess that there are some hopes, and some dreams that I must convince myself I don’t want. Children? That is one. My children? Never, ever, ever!

And yet even telling myself I don’t want them brings pain, and tears, and despair.

welland

 

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Autism: Best Case Scenario

The fear had been strong. The panic was growing as the time came closer and closer. I had no idea how I would manage. My therapist said I had nothing to fear, and that made my fear worse; of course I had much to fear.

We finished packing and got in the car. As we started to drive I felt calm, peace – excitement even – washing over me. It could be a good trip. Though things could end really bad, they might be okay. Still I had concern for when we got there a little over 2 hours later.

When we pulled in, I had a moment of panic. A moment of pain. Just a second really, and then from nowhere came the peace and contentment once more. They were there. I was there. I was okay. It had to be… it had to be… “Thank you, Lord.”

We had our day. I walked the dogs, went for a swim, brought ‘my girls’ closer. I looked over at them and felt… fine! Where did that come from? Thank you, Lord.

I had my supper before everyone else – I have to do that or I panic, and am overwhelmed, and fall apart; doesn’t matter who I am with – their food is more than I can handle. Their timing leaves me crashing. I ate, went to the camper to write my journal, and felt… good!

In the evening we played cards. We had a great game of ’31;’ best ever, really. Then we played ‘hearts,’ and I enjoyed that, too. It was a good evening. I felt… happy!

After cards a couple of people who don’t live too far left for the night. A couple more went down to the lake or something. We were left with this couple who brought about such traumatic pain in our lives 9 years ago almost to the day.

She began by asking about the kids and went into a very sincere apology for calling the ministry on us. It was sincere. I fully believe that. I can tell these things. They felt bad. It was all over their faces. Regret was there; I know it.

She said that she thought at the time that her heart was in the right place, but looking back, “maybe it wasn’t.” I could tell from their expressions this has been painful for them for a long time. She told me she felt sick over it, and has regretted it for a long time.

I responded that “we all do things we regret.” My husband agreed. I don’t know if they saw it, but I was sincere, too. I know regret. I know shame. I know pain. My ‘gift’ (and for good reason) is mercy, and mercy they had for their remorse was very real.

We then spent a very long time talking about the children – and I spoke to them as I speak to everyone else about my kids who cares to know. It was nothing short of amazing to be there talking to them like that. Not fake. Not forced. True and natural.

I know it was all God. I never even hoped to have anything like that experience from them, or to ever get an apology. My fear was that in being near to them I wouldn’t be able to show them the grace I knew I should give, being a child of God. I was afraid I would fail… again. I was afraid of what they could do to me, or take away from me, and was afraid that would show.

What was given was better than I could ever have imagined – and all I can say is, “Thank you, Lord.”

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Autism: Please, Not Again!

So we did go camping. I had a lot of anxiety over this through the year as I couldn’t figure out a way (that I could afford) to keep ‘my girls’ safe during the trip – and to keep others safe from them. It isn’t that they are aggressive dogs, but they are defensive, and that often looks the same; for Clara especially.

Clara is my baby. She loves to cuddle. She loves to be held. She curls up in the crook of my arm like a newborn baby as I walk, or rock, or talk to her. She is tiny. She is cute. And maybe, people think, this is why she doesn’t behave well with ‘others’ around. Yet for as long as I have had her, I have never allowed her to jump at people, nip at people, behave in negative ways. She does get in trouble for such things – and she is smart enough to know what I mean; I can see it in her eyes. But she still does it, so I warn people away.

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Clara not wanting to leave ‘bed’ to visit while camping.  July 2017

Clara doesn’t like different. She doesn’t like new. It took me three weeks, and many liver treats to fully win her over. Thirteen months since we got her, my husband still hasn’t made it that far. He can give her treats. He can hold her leash while she is wearing it, maybe. He can be in the same room. He can even talk to her. But that is about as far as it goes. My son doesn’t even get that much. We are happy if she doesn’t bark at him when he comes up the stairs.

Clara is ‘my girl,’ and she has decided that as far as people are concerned, I am enough for her.

Maybe she wasn’t socialized well when she was young (she was nearly 3 years old when I got her, and came from a house with many other dogs.) Maybe something happened before I got her that frightened her (they did try to adopt her to another home before mine, but took her back after 10 days for she wouldn’t come out of the corner where she was hiding.)

Whatever the reason, she doesn’t allow people close to her.

“She might nip,” I tell them. (Please give her space.) So far she hasn’t hurt anyone. She has scared and surprised many when she suddenly lunged at them. I don’t know that she would hurt anyone – but I also am not convinced she wouldn’t. So… please stay away.

I love my girl. She is comforting, and caring, and loving, and absolutely the one I needed to help me through and past – even if I didn’t know that when she first came to me. But she is a one person dog – and (much like myself) it will take more than your confidence that you are ‘good with dogs’ to gain her trust. In fact, nice as you probably are, it is unlikely she will ever give that trust to you.

Molly is much more laid back. Much calmer. But it is rare that Clara will give the chance to get close to her. So Molly likely wouldn’t nip – but Clara would do it for her. Best to leave her alone, too. We are her ‘pack’ I suppose, and she would quite possibly give her life to defend us (all 6.5 lbs of her.)

But she is cute – and that cuteness is almost an overwhelming temptation for dog loving children who don’t understand that not all dogs can be won over by kindness.

Such was the case with my niece’s 4 year old daughter who was up camping the same time we were. We all warned her, but she had no fear. She knew that she wouldn’t hurt ‘anyone,’ and was convinced that she would be able to get Clara to see that. After all, she was able to sit and pet Molly while my husband held Clara’s leash out of reach.

Alas, such was not to be the case.

I was sitting on a camp chair. Clara was on the ground resting. Her leash was wrapped around the arm of the chair to shorten it (there were a lot of people up at the time) and I was holding the end, also wrapped around my hand. The girl came from behind us. We didn’t know she was coming until she was there – but Clara was aware. She barked, and jumped at her before I could pull her back.

Away the girl left, in tears and badly frightened.

I took my girls, and left too; I needed alone time. Perhaps they didn’t see the tears I cried that day, or feel the fear in my heart. Perhaps they didn’t know how badly triggered I was in that moment, or how afraid of what would be done to ‘my girl.’ Perhaps they thought I didn’t care… Or maybe they saw all of it. Maybe they knew what it reminded me of. Maybe they saw me then, too – for that happened only feet away that time so long ago – and yet not long at all.

I talked with her father later that day.

“Has Clara ever nipped you,” he asked me.

“Once when I first got her,” I answered, “but so far it has just been scary, and she hasn’t hurt anyone. I don’t know if…”

“She didn’t hurt her,” he said. “She was just scared.”

But had we been there with another person – the one who was there that other time – the one who… but I can’t talk about that now. Had she been there… had it been her child… it wouldn’t have mattered that Clara “just scared her,” she would have had my dog put down.

My children stolen. My ‘baby’ murdered. I don’t think I could bare it again. I don’t think I could live – no, not even live – through such pain again.

Not again.

 

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Autism: Crates and Pens

Well, there we were; three days before my husband’s vacation started, and I was feeling particularly bad. Though I was thankful at first he understood why I thought I couldn’t go – I was also emotionally struggling with the fact that he didn’t seem to care, and didn’t seem to be trying to find a solution. Suddenly I really did want to go (mainly because I had found out his sister wouldn’t likely be able to come into town to visit; and we don’t see her often since she lives kind of far; and she has health issues; and…)

I had spent most of the morning picking cherries off our backyard cherry tree. It is north of our carport, in probably the worst possible location for it. It is loaded with cherries, but they tend to be quite wormy. After harvesting, I took them inside, and spent most of the afternoon cutting and pitting them, and removing worms. Gross.

And then the phone rang.

It was my husband. He works at the thrift store, and right before he phoned, a large metal dog crate had been dropped off. “It is 4′ x 2.5’” he told me. Did I want it?

Now, that isn’t huge, but my dogs are small. A crate with a roof meant that I could take my dogs camping, and still keep them safe from eagles, osprey, and owls that might like to eat them. It would also keep them from chasing all the people, bikes, cars, dogs, cows! And other animals they saw – so keeping them and others safe.

The phone call was brief, yet it changed all of my plans – and I was very happy!

Yet I still wasn’t sure my husband wanted me to go with him. “So we can come with you?” I asked when he brought it home. Yet his response (while admittedly it might have meant nothing of the sort) didn’t confirm to me that he was thrilled with the prospect.

Still I carried on packing.

That evening, neighbours came by. I had the crate set up (to ensure I could) and they offered the use of their hex pen as well. The hex pen was the same height as the crate (3′) and had 8 2′ sections with a door in one. Perfect!

I guess that my husband saw my excitement at that point in the idea of being able to go up to the lake – and whether it was something he wanted, or didn’t, he did accept it then.

Still I worried. I don’t want to be where I am not wanted, yet… I really do want my husband to want me there. I really do want my husband to love me. And as I packed, I was not convinced. I suppose I should be one way or another – but my husband and I were… thrown onto different wavelengths when our children were moved. I guess that is the best way to describe it. Sometimes I really believe he wants me around. The rest? I guess I am convinced he wishes we never met. I suppose it is the same for him.

We did end up going camping. We did end up having a good time. And for the most part? He seemed happy to have us there with him.

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Autism: Like Losing My Children All Over Again

The week my mom left was an especially difficult time for me. It is so hard for my mind to understand the abstract nature of this world – such that, “my mom is gone; will I see her again; and… are my memories of yesterday(s) real?”

Above the difficulty I was having with her departure, I also happened to be reading a book that led me to question my faith. It wasn’t so much in belief, but in “faith without works is dead.” So I was overflowing with guilt and shame, regret, and fear that since I seem to fail at everything. Does this then mean I won’t have ‘works’ to show my faith is alive, and therefore God will reject me?

That same week, I must have been triggered by something (perhaps the dream in which I was trying to bring my children home,) for I was emotionally re-living the loss of my (foster) children, and the attack I had experienced at that time much like it was occurring again in the present time. My pastor says that the emotional receptors of the brain don’t understand time. Therefore, when a memory is triggered from something that was emotional (and that time in my life was very much so) it feels as if we are experiencing it again. Therefore the saying “Time will heal,” is not accurate.

welland

I tend to agree with him on that one, as it is certainly true for me. I frequently relive traumatic times in my life when memories are triggered, and it really hurts as badly now as it did then. I may not be living it every moment of every day as I did when it happened – but the pain is just as intense, and the hurt just as strong, as it was in those days.

And then I had another dream. And though the dream was extremely unlikely to be a subconscious reflection of reality; and though he has never given me any reason to believe this might be a possibility; and though I have not been suspicious, or jealous, or anything in our relationship – the dream still had a very strong impact on me.

In the dream, my husband was confessing to cheating on me continuously, and was mocking me for being upset, and for being too stupid to know he didn’t want our marriage to last.

It wasn’t even a very long dream, and when I woke up, while I still acknowledged such a thing to be extremely unlikely – emotionally I was aching, and responding to my husband as if it were true. I didn’t speak to him of this – it was a particularly ridiculous dream; yet perhaps if I had I would have been able to heal, and not fall apart in ways he couldn’t understand (not knowing where such things were coming from.)

It has been hard enough living with this idea that he doesn’t want me battling in my mind for several years – but to have this added to my mind: that he doesn’t want me because he has someone else (even if I know it to be untrue, and only the result of one nightmare) brought me to a certainty that he doesn’t love me, and doesn’t even want me around.

And while it was unfair to him, since it had nothing to do with his actions, and everything to do with my dream; I still responded to him as if it were truth – and it hurt. It really, really hurt. And he had no idea.

So he fed this belief he didn’t know I had, from a source fully outside of reality, by responding to my discussions about not being able to go to the lake since I had no solution for keeping my girls safe with (what appeared to me) indifference – and as if he really didn’t want me to go with him. And then he got my gloves wet, and I fell apart, and it was like…

It was like losing my children all over again.

 

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Autism: Not A Great Chess Player

When I was a teenager, I had a friend who wanted to play chess with me. He taught me how to play, and I would look at the board, and know how each piece was supposed to be moved. I would play the game, and sometimes I would win.

For many years I would look at a chess board with longing, yet did not spend a lot of time playing with other people (or playing alone.) You see, while I could imagine myself thinking through the strategies, and playing the game well, the reality was quite different.

I don’t actually have a mind that can focus, or make logical decisions playing such a game as chess. I have a great mind for imagining, and so I am able to picture myself as a great chess player, very much focused and enjoying a game that I have a good chance of winning – but I have found over the years that isn’t actually who I am.

My mind is so great at imagining that I can frequently bring myself to believe that I would be really good at something, and/or would really enjoy doing something, and I can actually hold that belief until the time when I experience it for real only to fail. At that point, I wonder what went wrong. I was so sure that I would be good at it that it never crossed my mind that I wasn’t built for such things.

There are many things in my life that I can imagine myself to be good at:

  • parenting
  • playing the keyboard
  • crafts such as sewing, knitting, painting
  • gardening
  • farming
  • home renovations
  • woodworking

But the reality is that though I have had years of practice and even training in many of these areas, I am still not at all good at them. I suppose I just wasn’t built that way.

And the thing is, because I can imagine myself to be really good at these things that I feel I would love to do and be, I find it incredibly frustrating, and depressing, to be faced with the reality that this is not who I am.

In fact, the majority of who I have imagined myself to be throughout my life, has turned out to be things I am either not at all talented in, or dislike doing altogether. It leaves me unsure of who I am, or what I would like at all.

Four years ago I took a course in Residential Construction (a foundation course for carpentry apprenticeships.) I did really well in the theory side of the work, and well enough on the practical, that I completed the course top of my class (94% average in a class where nearly half of my classmates failed.) Because my entire immediate family (mom, dad, brothers) were really skilled in this area, I could very much imagine that I would be good in it as well. However, despite my high marks, I was not at all equipped to work in that environment. Under such stress, pressure, and exhausting work, my functioning level dropped to the point where I couldn’t do the work at all.

Had I done well, I would have been at Journeyman level at this point in my life, which I imagine would be a decent place to be.

It is the same with parenting. Throughout my childhood, while I couldn’t relate to any of the children around me, I did love children, and babies, and… I could imagine myself as a great parent with a lot of children. I loved dolls. I wanted children. I even took a 2 years Early Childhood Education course at college and graduated with Dean’s Honours.

I ran a daycare. I home schooled my son. I took and passed an adoption home study, and had three high needs children placed with me for adoption. And… I failed.

The truth was, I could imagine myself as a great parent, but most of the time I was overwhelmed. I could not relate to other parents. I could not relate to the social needs. I was overwhelmed by the behaviours. I was not relaxed. I was not calm. I didn’t even like the world enough to feel confident sending my children out into it.

My concern now is in knowing that my imagination is capable of seeing myself successful and enjoying many different things in life that in reality would not be good for me at all, how could I possibly decide what would truly be good for me?

I thought I could be a good chess player, but I am not. So who am I then?

ResCon

 

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