Denial and Young Children with Autism

So as I mentioned in my last blog post I was in a meeting with someone I respected that was more than an acquaintance and less than a friend. We were talking about mobilizing parents in our states early intervention system which is called EarlySteps. This includes children with Autism and with other disabilities.
I will take the blame for part of this because I don’t remember exactly how I said what I was trying to get across at the beginning. Whatever I said I gave this person the impression that I was talking about parents of children with Autism being in ‘denial’. Specifically children in the zero to 3 age group. I hate that tern. The only term I hate more than denial is ‘non-compliant’.

I got a little upset because I don’t believe I or many of the young parents I meet know that their child has a Autism and choose to ignore it. I realized my child had a disability but did not understand how serious it was for many years.

I believe that many of the young parents I meet are in the same situation. They may or may not realize their child has a disability. Not because they choose to ignore what is going on but because they may not realize their child is not in the range they should be in.

Other parents know there is a problem but do not realize how large of a difference there is between what their child should know and be able to do and can perform. It’s not a choice it’s a lack of knowledge and maybe even a lack of being able to prioritize the significance of what is going on in their lives.

Well later after the meeting my friendly acquaintance and I had a chance to talk. He doesn’t see denial as an action on a parent’s part to ignore what is happening. He sees denial as a situation when everyone else can see the difference and the parent cannot.

That was definitely a paradigm shift for me. The majority of the time when I hear professionals say denial it is said with what seems to be sarcasm. But…taking ownership for my role in the world maybe not all professionals mean a parent is deliberately ignoring the problem.

I’m also thinking of how many people I have been annoyed with when speaking of denial. Wow…. How about you?

Which way do you think of the term ‘denial’? Does that word upset you too?

Friends, Acquaintances, or What?

I had a conversation with a person I respect that I will get into on a later post. Right now I'm trying to figure something out. What do you call those people that are quite a bit more than an acquaintance but not really a friend? People you may meet through work or who are providers of services to your child with autism or who are providers in other areas of your life. There should be a name for that person, not yet friend but more than an acquaintance. To just call them a friendly acquaintance seems demeaning. My social worker friend tells me that's why you should have clear cut roles that should not cross. If it were only that easy... What do you think? Please comment as I'm really curious.

Autism and College

I only know of four people with Autism Spectrum Disorders that went to college. Of those 4, only 3 have diplomas. One of them was still in the process at a community college. One worked as a mental health case worker. Another one wrote articles for a living. The third was a professor at a college. I guess the point to all of this is that it is possible for people with Autism to get degrees and have professional jobs. Of course not everyone is cut out for college. Similar to all the people in the world, some are cut out for college and some are not. Of course these three people have gotten sometimes extensive support to handle the social pressures associated with getting their degrees. Of course, of course, of course…but it is possible.

Autism Sensitivities

I’m fascinated at the theory that people with autism may have been such a mainstay of civilization years ago. During a time when people had to always be on the lookout for predators or the enemy people with autism would have essentially been the look outs. Going along with this theory, people on the autism spectrum would have been sensitive enough to their surroundings and other people that they would have seen and felt things the rest of the world missed. This was a valuable skill. Now there are so many inputs into a person that it becomes never ending noise to a person with autism. Constant input is even painful. It wouldn’t matter if the input is audible, visual, something that could be felt, or a combination of any of these. It could cause pain. This so accurately describes my daughters. One of my daughters will start to cry or get angry for no reason. Typically we will be in a group of people where someone will start crying or get angry at the exact same time she does. It’s almost eerie and has happened more times than I can count. Taking this a step further, we are cluttering up the world with so many sights and sounds. This clutter is to the detriment of people who are so sensitive. To carry that a little further those people then act out with what we consider inappropriate behavior. That, at least for me, is a shocking thought.

Dear Daughter and a Nap

As promised here is one of the stories since DD (Dear Daughter)stopped the medication for headbanging. As you know this is one of the possible serious problems you may have to deal with when you have a child with autism. Not all children with autism headbang or have self injurious behavior. As I'm sure I have said way too many times my oldest daughter is my child with full blown autism. Anyway the medication DD was taking was in short supply so the doctor and I decided to try going without it. There were other medications we could try but it had been many years since we had started this one...11 years. The first thing the provider and I noticed was that she was alot more verbal about what she wanted. Now at my house and now at her own house being a verbal independent person was considered a good thing. I do understand that other peopel value being calm and controled but we were passionate and out spoken. I consider both sides to be equally useful values. Not everyone else has that viewpoint. Although the provider certainly was not complaining, they did share with me that at one point she fussed because they had not warned her that a new staff was coming to her house to train. I agreed with DD. The should be routinely checking with her when there is going to be changes. Then it was my turn. DD called me one Sunday while I was working. We were just chit chatting and I said something to the effect of 'I wish I could take a nap.' DD procedes to remind me that she cannot take a nap because the provider and I have said it wasn't a good idea. In my defence what was happening was the DSP (direct service personnel) were letting her sleep all day and she was up all night. She was up and upset during the night. So no nap. Or at least not one without talking to me or the supervisor. I explained this to DD and changed the subject. This is a technique that had worked and worked easily. DD just forgets about what she is fussing about. At least she forgets most of the time. Which is fine. Somehow we got on the subject of her sister. I told her to call her sister and talk. Maybe a half hour later DD calls me back and says her sister didn't answer. Without thinking I said 'She's probably taking a nap.' DD responded 'A NAP. Why she get to take a nap and I don't.' And on and on. Finally I'm laughing and trying to interrupt to find out who the staff is on duty today. DD tells me and lets me talk to the staff. I ask them to 'Please let her take a nap.' Then I talk to DD and tell her to go ahead. She said, 'Fine!' Considering how difficult it is to facilitate communication when someone has autism I'm thrilled. This is just one of several instances in the past few weeks that she has been easily able to tell me or someone else what is the matter. What's more she's been able to hang onto the subject and follow it through. I really wonder if this is due to the medication being removed. It was and still is more important to me that she is not hurting herself. But given that that behavior seems to be gone...I'm terribly pleased at the difference in the way she thinks. Although I talk about autism behaviors and what to do about them I want her to know what she wants and to make efforts to get it. Autism or not she deserves that.

Autism Medication

One of the medications we depend on for my daughter is in short supply. I'm not exactly sure why. The pharmacist and the doctor say it's a problem somewhere in production. Unfortunately, similar to other members of a sub-group of chidren with autism, this is the medication we have used for years to help control the head banging and self injurious behaviors. After a long discussion and much trepidation we have decided to go without it. I have been very worried. It's been a month or maybe six weeks and I am very pleased with the results. Let me explain. We have not had but one or two incidents of any banging. Even during those two incidents all she did was bang her hands on the wall. We have also seen some positive changes to her thinking that I will talk about in my next post. I must say I was really scared. She would bite herself and bang her head on the floor as hard as she could. Granted this had been years ago. She's 23 now and the last period was when she was about 12. So she had been on the medication for 11 years. I suppose I needed to talk about this because it's so important to regularly thinks about what medication our children are taking, why they take them, and how long. I can't say I would have thought of it myself or even been willing to have her take a holiday from this particular medication. I do believe in as little medication as possible though. The positive changes are definitely icing on the cake. Do you have a similar experience with medication? Please see my next post and one of the stories of positive changes.

How To Know if Autism Services Are Working

I suppose there are many ways to know if Autism Services are working correctly for a child or adult with Autism. One of my favorite ways presented itself the other day. As some of you may know my oldest daughter lives in her own apartment. She has supports 24/7 because of some of the typical Autism Behaviors and some more difficult behavioral issues. Most of the time things are ok. Unfortunately when she gets mad she gets mad quick and sometimes it's bad. DD called me excited because she had seen her oldest brother's half brother. Apparently she was at the show with her staff and having trouble getting down the stairs. The half brother helped her get down. She knew who he was and called to tell me. In turn a couple days later I told DS that DD had seen his half brother and he was helping her. DS tell me his half brother called him and told him about it too. The staff person was right there but DD was annoyed at the stairs. From this little incident I was able to surmise several things. For one thing my daughter and her staff were where they were supposed to be. Second they were together and acting like they were supposed to. Third the staff know they might bump into people that know her and me almost anywhere. Although on some level I wonder why the staff wasn't helping her down the stairs... I suppose I should be glad she figured out how to get help on her own though. She's using thous Social Skills that we have been working on for what seems like forever. Services for adults and children with disabilities do work. It is similar to the ways you might try to decode if the services in school is working. It's not always about the papers and what they say. Many times the relationships tell me more than anything. What do you think? How do you know if it's working?

Cell Phone Annoyance

DD won't leave the cell phone alone. Well, ok, she won't leave the house phone alone either. Finally we have gotten to the point that both phones were out.

DD 'fixed' the house phone so well that the company had to be called to come and fix the hardward in the wall. She says she was taking the black piece out because it was in the way. Go figure.

Anyway the provider that handles her money was supposed to pay for her cell phone. We have been working on this for 2 and a half to 3 weeks. Still I learned when my daughter came home for the holiday this weekend that she didn't have a phone.

I think, with my little know-nothing self, that not having a phone is a health and safety issue. I even had to remind the provider to do an incident report. But that's another story.

I met DD and her DSP (direct support person) at the cell phone company. The DSP said that the cell phone company could not find her account. At I was in line I called the administrator at the provider and told her that I would pay for the phone and they could pay me back.

She started to explain to me why that would not be a good idea. I must admit I was past the point of listening to another explanation. I hung up. I called back later but I hung up.

I will certainly advocate to get my money back if for no other reason than DD stayed without a phone for 2 weeks. If I don't get it back oh well.

All of this to say, DD called me on her cell phone today to tell me she is going to the parade with the boyfriend. :D I am quite happy that she called me.

Boyfriends

My DD is back to seeing the guy she was seeing before. And the same one she was seeing befor that. I think they have broken up and gotten back together 4 or 5 times now.

It's not that she hasn't had the opportunity to date other guys. She just doesn't care for them. Typically they stop seeing each other because of another girl.

I'm annoyed but she is so happy when she is seeing him. DD came for the weekend before Mardi Gras and had to go back Sunday. Sunday she was singing. We also went to work out some issues with her cell phone yesterday and she was singing.

DD did tell me she wanted to 'lay' with him. She agreed it was time to call the doctor. We had the discussion about having a baby that might cry. I just wanted to make sure she and I were on the same page.

The discussions are really simple but I want to know if her ideas on a baby have changed. She loves kids but gets really upset when they cry. DD cries too. Sometimes being the mother of an adult with Autism is complicated.

At the same time I want her to have a life with all of the richness it can have, I want her to have a life that works. I'm determined to give her the choice BUT I do remind her that babies cry. I'm just doing the best I can.

Being an Autism Momma

What were you going to be? I mean before you became an Autism momma or Autism daddy? I had gotten my notary liscense and had signed up to take a course for my real estate liscense.

When I look back I don't think I knew that she had Autism yet. I just knew that wasn't where my life was going. I mean who else but us? They can't do it at least not as children.

Now I have a little breathing space. Both the daughter with Autism and the daughter with Aspergers are grown. I don't have to be 'on' all the time. My work and my life has revolved around Autism.

I don't regret it. As a matter of fact I think I'll keep doing THIS.

Managed Care Approach and Autism Services

I live in Louisiana. The Govenor's Executive Budget presentation to the Joint Legislative Committee on the Budget says long tern personal care services in the NOW Waiver will be handled with a managed care approach.

I wonder what that means. Do any of ya'll have experience with that expression in your state? How did it go?

Posting

I haven't written in awhile. Sometimes I get so overwhelmed with my own health and making things work for my daughters that I forget. It's not fair to my readers though. I mean after all how can we learn from each other.

It was like that in the school system too. You work so hard at figuring out which different programs and techniques that might work it gets too big. I hear homeschooling families go through the same struggle.

Now I'm working on things like employment for one of the daughters. Some problems though... Anyway I'm working at it.

Autism Classes and No Child Left Behind

A lot of the parents, raising children with Autism, struggle when discussing placement in the school system. Some of the families and the educational professionals believe that the ideal placement is and Autism class.

An Autism classroom is usually in an ordinary school. The idea being that your child has access to typical classrooms and typical activities. My experience is that most children in that type of class spend the majority if not all of their day inside that class. They do not really get to experience the things going on in the rest of the school.

This makes for some interesting situations. A lot of the parents of children with Autism in these classrooms find that their child is calmer and gets into less trouble. They also feel like their child is teased less. Those things may be true.

Unfortunately your child may be missing out on a lot of important and necessary things as well. The children spend a majority of time in a classroom with other students with Autism. There are more staff in those classrooms and sometimes other people in the school just see a child that is in that classroom as those teacher and aides responsibility.

I found that the more my daughters were around other students who had processing disorders, problems with self-stimulations, and difficulty communicating they had these difficulties more. I also have spoken with other parents who in hindsight have made the same observations.

Where it becomes more critical is when academic expectations are changed because a child is in that classroom. If a skill or concept is difficult to learn many times it will be left out of the teaching process.

An important example is No Child Left Behind and children with Autism. One of the important effects of No Child Left Behind (NCLB) is that all children are being tested. After all we test and examine what is important to us as a society. That is a value that with NCLB carried over into the school system.

Unfortunately because teaching children with Autism testing skills it difficult it a lot of times had been left out of their programming. Even when a specific child had the intelligence and skills to learn the material those skills had been neglected in the Autism class.

Your child may have still gotten many other accommodations that they needed for standardized testing. Extra time and staff support routinely is provided. Unfortunately those things do not help the child with Autism understand about bubbling in those little circles. Then our children are doing poorly on the test even though they might know some of the information.

The funny thing is that ALL children are learning these skills in the typical class. As a matter of fact they generally are practicing them several times a day in different subjects. To me that was a major reason that my daughters with Autism needed to be in typical classes. It was not the only reason but it was a large one.