Posts in category: » Parenting

Hodge Podge #1

Written in 10-3-2010 by Melody | No Comments

Three things have happened in the Autism world. Parenthood started airing on NBC last week. Last night was the second episode. The episodes are also available to watch online if you’re like me and don’t want to admit you’ve watched it. One of the three families has a son that was diagnosed with Asperger’s in the first episode. A lot of parents of Asperger’s kids said they really identified with the parents. What became apparent was that Asperger’s children are still seen as not having acceptable ‘behaviors’ to stay in their placement. The boy was being kicked out of a private school in the same episode. Just another place where Asperger’s is not accepted and accommodated.

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Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.

It does leave the question, why would he do such things?

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Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.

But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:

Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.

To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!

This is very displeasing to many. To try to work from within is a noble cause, Mr. John Elder Robison, but the naivety that just one man can change the whole of a community so rooted in fear, anger, deceit and hate could be damaging for us all.

Being Articulate, Mature and the 2/3s ‘Rule’

Written in 28-2-2010 by Melody | 2 Comments

Do those of you with Autism and parenting find yourself not meeting the 2/3 rule? I’ve been attending a support group for parents with Asperger’s kids and for adults with Asperger’s. It has been stated more than once that maturity level of people with Asperger’s is 2/3 their chronological age. I’m 27 now, so I according to this rule should have the maturity of someone that’s 18.

Now, without a doubt, I have met people that meet this rule. I just find myself not. Then again, I don’t think it has anything to do with neurology. I know some people I went to college with that are still maturity wise at a 20 yr level. I attribute a lot of it to the fact that I have kids. My own instinct was to mature with the birth of each of my children. This does not hold true for everyone. Again, I know someone who has a child that doesn’t have maturity.

Also, does being articulate change your perceived maturity level? I was complimented that I am one of the most understandable of the ‘Aspies’ that attend this support group. I’m sure it doesn’t hurt that I am raising Autistic children. So I can understand where the parents are coming from as well as the adults in the group. Have any of you witnessed this phenomenon? Especially those of you raising Autistic kids as well?

I think the 2/3 Rule is very subjective though. It really depends on the circumstances with your life.

Explaining. Perception.

Written in 6-2-2010 by Melody | 3 Comments

Today, I came across a casualty of ‘Autism is evil.’ campaigns. My oldest, who is more affected by Autism, was invited to a birthday party of his classmates. It’s a huge step forward that parents and kids alike are able to invite him knowing his differences. He even was withdrawn, sprawling and very noticeably upset within 5 minutes of coming in, but my little guy just wanted to stay. We stayed.

Parents avoided our gaze, for the most part. Not those that have come to know our family, but some of the others. I tried to keep him away from others because he was flailing and I didn’t want anyone, including him, to get hurt. Every so often, he would rejoin his classmates/friends for a little while.

The older brother of the birthday girl (here forward pseudonym ‘John’ will be used) was very interested and kept trying to talk to myself and my kiddo. He reassured me. He reassured my boy. After a little while, I decided to go ahead and tell him that Daniel has Autism. We haven’t put a word to it with the boys yet because within our household, they are pretty ‘typical’. John said in an instant, ‘I thought so after he came inside the house.’

John went on to explain the horrible things that Autism does. He was describing a boy he knew at school. And by the sounds of it, the boy he was describing was non-verbal and possibly violent. He didn’t seem to feel the same way about his classmate as he did about my son. After a little while, I told him I have a lot of the same problems, but with age have overcome them.

He was instantly confused, I think. He started asking me questions about how I overcame it. What was it like to be Autistic? How did you overcome it? I tried to explain that large crowds still are difficult, and that for some issues I have to take medicine. But this little boy, no older than 11-12, had never heard of being able to help some of the disabling aspects of Autism. In an instant explaining I had Autistic characteristics, it was like his world changed. I was there, with my Autistic son, being Autistic myself.

The part about this that is most complicated, how do we change the perception of these kids? When adults, parents, are showing them the ‘bad’ parts of Autism, that is what they’re learning. We may be combating the parents, but I think we also need to help these NT kids understand Autism isn’t a bad thing. We will be fighting against this message for generations to come because they don’t hear anything else.

Now We’re Cooking…

Written in 27-1-2010 by SicherndeSeele | No Comments

Until about 18 months ago,  I never cooked.  My repertoire consisted of breakfast foods & I was lovingly dubbed “The Frozen Food Queen” by my family.  I could bake up a storm, but if it wasn’t microwavable or came in a box that required nothing more than opening a can of tuna…it was not going to appear on anyone’s plate.

The reasons for this were many:

  1. My grandmothers both made me baker’s helper from the time I could walk.
  2. My mother always shoo’ed me out of the kitchen while cooking.
  3. My mother was terrified of us kids even making a sandwich with a butter knife.
  4. My mother’s OCD tendencies did not allow for us to leave a crumb in sight.  (Funny, I married her male counterpart, huh?)
  5. I could not possibly conceive of having more than one thing “going” at a time.  It seemed like utter chaos to me.

I should mention that the chaos thing follows me.  I have the Chaos Arrows tattooed on my right arm.  It is ever-present in my life.  I can NOT function in chaos.  I shut down.  I need order, but I have a hard time keeping order.  The minute I get a hint of things (house, work, kids) getting out of order, instead of fixing it, I shut down and then it becomes a mountain.

But enough about all that…That’s just background.  Here’s what I REALLY wanted to talk about.

What Do You Do When Your AS Munchkins Start Cooking – Unsupervised?

About 18 months ago I started cooking.  The kids were coming to Germany.  I got re-married.  I wanted to take care of everyone.  Turns out, I’m kinda good at it.  I treat it like a puzzle.  I LOVE puzzles.

So does Max.  Max and I are very much alike in many ways.  The whole order/chaos thing.  Well, there are a lot of parallels…

From the time he was born, Max was always very deliberate.  When he was 2 & Madison was 3 1/2 we went to the swimming pool at our hotel.  I would not let go of Madison, but Max didn’t worry me.  He watched every step and I knew he wouldn’t accidentally fall in.  Madison, on the other hand, would watch everywhere BUT where he was going.  (He still does!)

Max has started cooking.  He’s a regular Egg-Aficionado!  He’s woken me up to a plate full of delicious eggs.  I’ve asked him not to cook while Mommy isn’t there to watch, but tonight I realized he’s still been doing it.

I went to get eggs for the dinner I was making and we were out.

I am completely overcome with pride and absolute fear at the same time.  Pride because he loves doing it and feels good about it.  Absolute fear because if something went wrong – Max would shut down.  Just like when the TV comes on too loud on a static channel.  Suddenly, he can’t find the remote.  He can only clamp his hands over his ears and rock.

I want to foster EVERY SINGLE THING he is good at.  I don’t want him to get hurt.

Is my own need for control stifling him?  Or am I just being a cautious parent?  Thoughts?  Ideas?  Compromises?

*NOTE: I realized halfway through that I had neglected to state the ages of my kids.  Morgan is 14, Madison is 13 and Max is 11.

Hi, Hello, Greetings & Salutations

Written in 26-1-2010 by SicherndeSeele | One Comment

My name is Holly and I’m an addict OOPS!  Wrong room.

In all actuality, I am an addict of sorts.   I am addicted to the world I live in.  It is one of constant surprises and amazing wonder.  Sure, I spend a couple of months a year ready to move to a cave and never see the light of day again, but those are just moments.

I am a mother, a writer, war veteran, dog lover, wife, soon-to-be student (again), medic, housekeeper, music nut…Are you getting the general picture?

I have resisted my own dx for years and will likely continue to do so.  I like me.  I don’t want to change me.  Even when me, myself and I are at complete odds with one another.

I followed a very interesting path via Twitter and found this site.  I answered the Call to Arms and perhaps my life can (if nothing else) give YOU some comedy, me some catharsis and “them” some insight.

Without further ado – here are the players in this world of mine.  I like to call it Schizamore.  Crazy Love.  It works for us.

Holly – Me.  I am all over the map.  I love a lot of things, but I lack the patience with most everything in the world.  I am terrible in a crowded room, loud noises and I cannot talk on the phone if there is any outside stimuli.  My friends have often referred to me as having “a lot of layers”.  Even I haven’t figured them all out.

Kris – Husband & Stepdad (OCD, ASocial, Borderline…Anyone else wanna scream it with me?  SPECTRUM!!!)  Kris has no filter and doesn’t play well with others.  He won’t come up a lot as he’s still in the Army and, well…it just isn’t a good idea.

Morgan – Daughter (Artist, actress, sweetheart who has no problem being her own person – closest thing to NT we have here)

Madison – Son (In process of dx but verified Oppositional Defiant Disorder)

Max – Son (Aspie with a lifelong love affair with science.  Sound & touch sensory input issues…Best friend is the dog)

Loki – Our Siberian Husky.  Works hard at keeping us together and functional.  Has a nose for oncoming meltdowns and reacts like you might expect a trained service dog to.

This is my immediate family.  These are the people I can’t live without – Even when we think we can’t live with one another.  It’s all a matter of staggering our “moments”.

Nice to meet ya!  Pull up a chair and get comfy, ya hear?

A Call to Arms

Written in 25-1-2010 by Melody | No Comments

Partners Hands

Ladies and Gentlemen readers,

ASParenting was started with the idea that all parents with Autism Spectrum Disorders could find a place of support and strength. What I have found, though, is that I’m not supporting all ASD parents. I’m only one person with one set of experiences. I know nothing of raising NT children, or a mix of NT and AS children. I know nothing of the perspective of a father. Nor do I know what it’s like to be a parent with adult children.

So today I’m asking those of you who peruse this site,  if you or someone you know would like to help blog on this site, to send an email. No matter your background, whether self-diagnosed or professionally. I would like to give the chance for other parents to blog about things we all could benefit from.

If you or someone you know is interested, please send me an email. You can use the contact form, or email directly to melody@asparenting.com. Just a little introduction is all that’s needed. I will also make a post on the forum if you’d like to drop your info there.

Potty Training

Written in 17-1-2010 by Melody | 3 Comments

What I’ve learned…

  1. ‘All children are different.’
    • This one seems pretty self explanatory. But in my case, my son seems to be different than ALL children.
  2. Peer pressure is not always a bad thing.
    • We’ve discovered that my youngest will go potty at school, but not at home. So I explored this. What was different? We use the same methods. We have same premise of First-Then. Then it dawned on me when his SLP from school was here. She said he realized he got to go back to centers faster if he just pee’d.
    • She also said that they didn’t have anything as eye-catching as Super Mario Kart Wii. It turns out they have something even more so. They have his friends. You can pause a game. You can take a game with you. But friends? They keep going whether or not you’re there.
  3. Reinforcement only goes so far.
    • He LOVES the idea of a potty party. He LOVES stickers. He LOVES edible treats. Combining these together and it still doesn’t help him go. Though, I wonder if I had a big gift wrapped box with party hats, stickers and candy just out of reach if that’d work.
    • Tomorrow will be the test on this. I am going to create a sticker chart tonight. In the morning, there will be a ziplock baggie of skittles. He knows we have cupcakes and party supplies waiting, but they will go into a big box. Everything will be right in front of him waiting for him to go pee.
  4. You don’t actually WANT to know what everyone else has done to potty train their kids.
    • This ends up being an off-shot thing I’ve learned. Many parents seem to think abuse is the way to go. No wonder some kids don’t train for years. I’ve been told to stick my son in a cold shower. That I should spray him with cold water when he goes poop in his pants. IE torture.
    • I should only buy one pair of underwear. And each time he makes a mess in them, he has to watch the washer and dryer until they’re done. IE seclusion.
    • Some things you just don’t want to know about people. I know that there are abusive parents out there. But these suggestions came from people who in every other area treat their children well! Parents will go so far as to abuse their child to get them trained.
  5. ‘Positive Practice’ may be the sure fire way to train.
    • But I will never ever EVER use it again. I’m sorry, but the use of aversives on Autistic or any disabled or non-disabled child should be outlawed. This goes right along with Restraint and Seclusion to me! Apparently, conditioning is not only used for dogs, but for CHILDREN as well. I’m sorry, but there is something wrong with the practice. Why reduce a child to the level of an animal, or sometimes below? They are living human beings with emotions and awareness.
    • What does it say to them when parents and clinicians and professionals of all sort say that everything they do is wrong? No wonder there are some Autistics that believe in no intervention if they were subjected to these methods. No wonder there are people who mentally break and end up in facilities. It is a sad thing, aversives.

‘Bettering’ Ourselves, Helping Others

Written in 13-1-2010 by Melody | One Comment

I love being a mother, a wife, and all those things entail. There is also a part of me that says I could be doing ‘more.’ I do this site to give back to a community I see as needing some camaraderie. I’m sure there are some of my visitors who feel the same way.

What are some ways we can better ourselves and give back a little? I think a really big step for those that belong to our specific community is to find a way to bridge a gap. There is a gap between Non-Parent Self-Advocates (ASD non-parent adults), Parent Self- & Child-Advocates (ASD parents of ASD children), and Parent Child-Advocates (NT parents of ASD children).

I don’t see the two outer groups at being so different in what they want. But the message gets to messed up. ASD adults do want all of us to be accepted. Acceptance is only a piece of it. Accommodations and intervention are still key for maximum independence. NT parents want the kids to be happy and healthy. There are many who see their kids as damaged, yes. But in reality, they just haven’t been shown that their kids can get past that sometimes. Other times, the parents don’t have the support needed to help their children and are scared for their futures.

For those of us who are ASD parents of ASD children, we know how well our kids can do. At some point, we had to meet someone to become a parent. We know we were able to hold a relationship at least at one point. Some of us never had those early interventions and see some after effects of it such as mental health issues. So we can see what could have been done with ourselves and we try to do those for our children. Yes, there are sometimes that we will not be able to help our children be completely independent. But we have sometimes seen the abuse that can happen having experienced it ourselves. We know how to safe guard our children even if we have to lobby for it.

I hope that by the time my kids are my age, there will be a system in place to let ASD adults live on their own with accommodations. And I think if we bridge the gap between NT parents and ASD adults, we can get things to help all of us. Those dealing with the issues now, and our children that will deal with them in the future.

Understanding Grief

Written in 11-1-2010 by Melody | One Comment

I’m thinking about this because of a discussion that started on a listserv I’m a member. What does it mean to grieve? Should we not grieve because it’s illogical?

I have 3 instances in my life that I have grieved. I’m going to explore each one in this post. All were illogical as there was nothing I could do about it.

My first big grief was when I initially found out I was pregnant with my now 5 yr old son. My boyfriend had just broken up with me. I was being evicted from my apartment. How could I possibly raise a child? I was fearful that I’d have to give him up for adoption. Obviously now, I know that my family and friends supported my choice in keeping him. Should I have had those feelings? Probably not, but that does little to help someone in that situation.

My next big grief was when my now 4 yr old was diagnosed with Autism. My older son had suffered so much from his Autism. He couldn’t talk at that point. He constantly had meltdowns. Our house was a constant wreck from the tornado of rage my son felt. I was fearful that it would be the same for my little boy. It hasn’t been at all. In fact, we still get constant comments of how happy and cheerful he is, that they both are. We moved past the grief to actually doing all we could to help our children. But it doesn’t change those fears, the grief.

My last and biggest grief was when my father died. He would be 50 this year, so was 47 at the time. He had a heart attack. At the time, we were estranged from my parents because of his alcoholism. I was filled with anger and fear. I was angry that he couldn’t stop drinking. If he had, would he still be here? If he had gone to a doctor, would he still be here? And biggest, why didn’t I forgive him? These are all unresolved fears and so I still grieve over the death of my father.

It seems to me, that if you can come to grips with what has happened, you can move past the grief. You will be able to help yourself and the matter at hand. The grief will all but disappear. But for those initial instants, the grief is very real and comes from a fear of the unknown ahead.

The Floortime Approach

Written in 5-1-2010 by Melody | No Comments

We are looking into starting a floortime/DIR approach with both of our boys. I have been thinking about it and feel this is the best way for our family. But as I look more into it, the more I realize the approach may be just as much for me as it is the boys.

As I think about it, I wonder how well this approach would work for ASD parents of NT kids as well. The fundamentals are getting down on the child’s level to get meaningful interaction. I’ve been told that this modality will be difficult for me because I inherently, through my Asperger’s, have a hard time with interaction. While I don’t agree that all people with Asperger’s have this problem, I do know my playskills are quite limited. I never did much typical play as a child.

Could this be a way to help an Autistic adult learn to give the interaction many children crave? I’m not talking about all adults, but those who want to learn, it seems like a viable outlet. I will think on this more, but wanted to put my musings out there.

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