Posts in category: » Self-Help

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.

—

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?

—

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.

Support Groups, Meetups, and Social Gatherings

Written in 29-1-2010 by Melody | 2 Comments

Last night, I decided to go to an Asperger’s support group. It’s for both adults with and parents of. I was 5 minutes late because we had quite the rain last night, as such, traffic was bad coming home after picking my husband up from work. But I went nonetheless.

I’ve gone to another group that I don’t feel really meets my needs. I continue to go to it, because I feel like some of the younger Aspies could use a role model, even if I’m female. But last night was different. The adults with that were there were mostly my functioning level. Though, I can tell that their major perservation is not the study of ASDs.

One of my biggest ‘obsessions’ is definitely studying ASDs, both for kids with any form of Autism and adults who are more independent. I was responding to everyone’s concerns with my thoughts and ideas. And as I explained more and more, I was drawing more attention on myself. Finally, a ‘mother of’ looked at me and asked who I was and why I was there. It was pretty scary. While I didn’t mind the attention when I was responding, the thought of having to explain myself, even for a good reason, was petrifying.

I think I looked like a typical Aspie last night. I tend to not in day to day things, but when you get me in large groups like that, I don’t exactly know what to do. So I was sitting on the floor (all the chairs and couches were taken), not making eye contact, or even face contact, rocking back and forth, and writhing my hands. When I went to speak, I did so in a stutter until I knew it was truly my turn to speak.

I plan on creating (and have a meeting to discuss this tomorrow) a meetup for ASD adults. Nothing as formal as last evening. Definitely not like the other group. But just something to get together and talk or eat or play games. I don’t have the energy to create something that was structured like last night. The event alone was overwhelming and I had to take a good 15 min after it ended to calm down enough to drive in the car.

It’s also something I’ve been working on in therapy. I was to be able to push those boundaries. Where I’m comfortable without feeling so tense. Do any of you have any tips on how you get through those events?

I will say, out of all the ‘adults with’, I was the only one that expressed having children. Quite a few expressed not being in relationships. And others were working or attempting to find a job which seemed to mean they weren’t looking for a relationship. There was a couple there with one partner that is AS. It seemed to be fairly distributed independence levels.

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.

‘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.

Growing into Adulthood

Written in 26-7-2009 by Melody | No Comments

I know I usually try to keep things parenting based in most forms. Today, I’m not because it happens to be my birthday. I’m now 27 yrs old which is no big deal, but I was being introspective.

How is it that we have grown into adults, happy overall, healthy overall? We have heard time and time again that the outlook for people with ASDs to have meaningful relationships. That we will forever struggle to meet societal acceptance. Yet here we are, for the most part, living productive lives. I doubt any of us are hermits in our parents basement. (Though, my family does cohabit with my mother.)

I think it’s a mixture of many things. We were really forced to sink or swim. It’s a Darwinism in the simplest form. I think at one point we had the guidance to realize we needed to swim, that we needed to survive. I have to thank my mother and a great childhood friend. Between my mom instilling that I could do anything, and the guidance of that friend, I pushed myself beyond my limits. I grew in ways most would never imagine.

So in celebration of my birthday, I’d like you all to take a few minutes and think of how you were helped to swim, so to speak. It doesn’t have to be people, it could easily be something inside yourself alone.

Parents with Asperger’s: Part 2 – Positive Reinforcement

Written in 29-6-2009 by Melody | No Comments

Couple watching son and daughter (9-11) swinging each other around

As much as the first part was negative, I will attempt to make this one much stronger and uplifting. While most of the links are blogs and personal websites, it is important to note that there ARE other places for positive support.

It is argued that even with support, some parents with Asperger syndrome simply may not be up to the enormous task. Raising a psychologically healthy child involves complex emotional interaction between parent and child, as well as the ability to avoid parental behaviors damaging to a child’s well-being. However it can be easily argued that many neurotypical parents have very poor parenting skills, and of course there are many parents on the autistic spectrum who have excellent parenting skills.

Some adults with Asperger’s syndrome rightly point out that many parents experience parenting difficulties as parents without being on the autism spectrum and that ‘aspies’ should not be singled out as being unable to be effective parents. Asperger syndrome parents should certainly not, be stereotyped or categorized as evil, uncaring, or intentionally abusive. If Aspergers syndrome does affect a person’s parenting skills, this would simply mean that appropriate support should be looked at, as it would be for a parent with anger management issues, depression or any other condition that could impact on their children’s lives.

That comes from Autism Help.org. If you would have looked at their site even a year ago, the negativity towards people having healthy relationships as adults would have shocked you. Luckily, due to changes in perception, this is no longer the case. Obviously, this is just a small snippet and doesn’t go into detail, but we ARE making headway.

There are sites across the web by parents who have come to discover their own Asperger’s. From Life with Asperger’s to Aspie World, you can see examples of parents talking about their lives, marriage, kids. Even some young adults just starting their journey in to parenthood are chiming in on their experiences.

There are some organizations for an Autistic convention, women, advocacy and education, not to mention, research.

It is my hope that we will be able to spread even more. To show that we can not only be good parents, but also, show that we can help neurotypicals some insightful ways to raise their children as well. (And maybe even be nationally recognized with news pieces on families like all of ours!)

Separate rooms – Separate space

Written in 19-6-2009 by Melody | No Comments

Young woman with laptop studying on bed in dorm room, side view

Before we moved back to Texas, we lived in a 5 room apartment, 2 bedrooms, two open layout rooms that were supposed to be a living room and a dining room and a eat-in kitchen. As with most parents, we kept our room somewhat off bounds to the children. I bring this up because a moment has just occurred in our new home that I don’t think would have worked out so well in the old home.

I have had a long week so really wanted some “me” time. D, my oldest, has been off because his day isn’t as structured as it would be with school. S, my youngest, is himself, but that means attached. So getting me time would not have been possible before. But instead, I am getting time right now to post this.

We have two different living areas, plus bedrooms, plus dining areas here. So while I’m in here relaxing, D is in his bedroom, in his tent, playing his Gameboy SP. Where’s S? In the other living area watching his cartoons. It won’t last for long. Someone will want some more time with someone else. But it is nice to have separate space, in separate rooms, so we can all relax a little.

I must say, this is how I imagine an Autism Independent Living neighborhood would be as well.

The Importance of Advocacy!

Written in 23-5-2009 by Melody | No Comments

Stamp

With our move, I have come to realize one big truth about myself. I must advocate for my children and myself. While I still know people that live in the Dallas area, I am required to open myself up to more than those people. So far, I have been quite lucky with those that I’ve met.

School professionals? They have congratulated me on my knowledge, order and preparation. They like the initiative I’m taking to learn about my children’s education. All around, it has been an excellent experience. They are all quite aware that I have Asperger’s and have concluded that both boys do indeed qualify for an IEP under the diagnosis of Autism.

Rehabilitative professionals? They also have noticed my keen knowledge of the boys. Surprisingly, I have learned that most parents don’t get to know the ins and outs of their children like I have. I’m not sure why, but it comes natural for me to learn every aspect and keep up to date. There was no shock this week when my oldest, now 5, was evaluated at below a 3 year old level, and no shock that my youngest, now 4, was evaluated at about a 3 1/2 year old level. We have come to grips with this and do what we can do push them further. And once again, I have let them know that I have Asperger’s.

I have now come to my roadblock when it comes to success with advocacy. I am now trying to become part of a local mom’s group. Armed with my relatively new diagnosis of Asperger’s Syndrome, I am doing what I can to advocate. I make sure to let people know about Autism Spectrum Disorders. I make them aware that my children are delayed for their age. What I seem to keep forgetting is advocating for myself. So today, I ran into my roadblock from opening my proverbial mouth. On the message board for this group, I chose words unwisely. I upset someone unintentionally. But I took that moment to explain myself when I had the opportunity. I invited the person to read more about social deficits with those Asperger’s people.

I usually don’t upset others, but I do know I make rude comments at times. This is not about making excuses though. This is a time for learning as well. Both from my side, on learning that certain comments are better left unsaid, and from the other side, that sometimes people don’t always intend to be mean.

« Older Entries