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.

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.

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.

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.

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.

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!)

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.

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.

I’m doing this quick blurb, but have more that I’m waiting on. Specifically, I have some videos that we’re editting here at home.

I’ve chosen to speak to those of you in the US. I’ve spoken at two different events at Connecticut State Capitol. We have a great bill in committee to cover evaluations, medication and ABA. While, they are looking to expand the ABA to doctor prescribed behavior treatment. I’m rather hopeful that changing it, that it will also include cognitive-behavioral therapy which can help us adults.

I’d encourage all of you to see what your state or country is doing. Get active and involved. It’ll be a great experience for you and how to speak infront of others. And who knows, maybe it’ll convince those you speak to understand a little bit there is a whole adult population that “have a clue”.

After much discussion with providers, husband and self reflection, I do believe that Change has to be the Achilles’ Heel of Asperger’s and Autism in general. No matter how much we “blend” into society, this one thing will usually be the one thing that disrupts all we have done.

I have done my best to accept change in normal every day life, and tried to adapt so that changes in schedule do not disrupt. I do not keep an hourly schedule for this exact reason. I do keep a daily schedule, as in things I need to do during a day. This ensures everything gets done.

Even a change that I’m welcoming, has turned my life topsy turvy whenever I think about it. We are moving in 2 months. Our family move is for the best of everyone involved and is a much better situation than we are living in now. Yet, the thought keeps me unnerved.

But now what I need to learn is how to deal with change that disrupts even my very simplistic schedule. So I ask those readers I have, what are your suggestions on how to physically deal with change? How do you deal with changes?