About Me

A couple of years ago, I found my autistic child locked in a small cold cement cell at his school. The cell had no windows, no furniture, and was slate gray with low lighting. The cell was also sound proofed so parents and teachers outside wouldn’t hear him crying. I am writing this blog as a campaign to change the way these children are perceived and treated in our society.

Tuesday, November 23, 2010


After today, after I had to rush to school to help my child, I find myself on the verge of tears.  It has been a few hours ... but I still want to cry.

Most days, I am good ... I am not really the crying type.  But today, I just feel overwhelmed.  The teacher sent me an email asking me my thoughts ... I am so glad that I hit delete and didn't tell her what I was really thinking.  About how, even though it was a different school that locked him in a cell, I cannot help but blame them, all of them.  They work for the school district, they know what goes on ...  And I just get so frustrated with them when they act so surprised that he becomes emotional so easily ... of course he is stressed out at school, who wouldn't be if they went through what he did? 

I want to cry because I want to tell them what I really feel, but I hold it in because I know it won't be productive, I will just alienate them ... but my son is under so much stress ... and I don't know what to do.  So I just want to cry, because it seems like all the professionals that I go to, all of the help that I have searched for, it just seems like none of it works, none of the diets, none of the treatments ... I feel like not only do I not know what to do, but that nobody does.  Today is a bad day, most days aren't like this ... but right now, I just want to curl up on my bed and sob.

Do parent's of autistic children cry more, I wonder? 

Monday, November 22, 2010

Finding a Care Giver for Your Autistic Child

The initial step in finding someone for your child is to place an advertisement for the position.  There are places, like Craig’s list, that you may do this for free.  Also, there may be websites that focus specifically on people in the health care industry.  If your child receives state assistance, ask the social worker if they have a website or any resources available in your state to help you find a care giver for your child.
After placing an ad, you may have several calls about the position.  I find it best to put my email address in the advertisement instead of a phone number, and then respond with a standard email that asks the applicant questions that will help me screen them before I set up an interview.  Please look at this post as an indicator of the possible pre-interview questions that you might want to ask.
Over the years I have found that there are many people who love children, but simply don’t do very well with my autistic child.  It seems that even if someone has experience working at a daycare or babysitting children the same age, they still may have difficulty handling a young child with autism. 
There are several reasons that this type of experience simply isn’t enough of an indicator if they will be a good match.  Essentially, they will expect your child to behave a certain way based on their other experience.  As an example, my son has had difficulty dealing with some of his care givers because he would lock into a decision.  When listening to adults deal with children you often hear “Would you like to go for a walk?”  And sometimes the child may say “no.”  At which point the adult would continue to try to persuade the child, “But a walk would be soooo much fun, I’ll bet other children are going for a walk!”  And this would normally work.  With my son, once you ask him if he wants to do something and he says no, trying to talk him into it is a waste of time.  In other words, if you need him to go on a walk because you believe that he needs some exercise, you have to say “we are going to go on a walk in five minutes.”  If the care giver had just said this from the beginning, he would have been fine.  Instead, he is now angry that you asked him what he wanted to do, he told you, and now you are forcing him to do what he told you he didn’t want to do!  From his perspective, this is mean.  As I have said before in my post Communicating with an Autistic Child, autistic children simply view the world differently than we do so communicating with them is different.
Although experience with children may not be a sufficient indicator if the care giver is going to be good with the child, there are other indicators that have helped me find good help.
1)      If the person has spent time dealing one on one with another autistic child.
2)      If the person has experience in the health care industry dealing directly with patients.
3)      If the person is open minded and somewhat philosophical in their dealings with people.
4)      If the person is not easily offended in social situations.
5)      If the person has taken any classes involving health care or social services.
6)      If the person shares any interests that the child has.
7)      If the person is perceptive and will pick up on some of the small cue’s that the autistic child uses to communicate.
With my son, I have found someone who is upbeat and laughs easily does really well with him.  This is because my son loves to laugh.
During the interview, I will ask them questions that will help me determine if they have the qualities necessary to be a good fit for my son.  I also found it beneficial to have my son there so that I may introduce them to him after the interview was over.  I would look to see if they seemed offended if my son didn’t really respond to them when they would say hi.  Especially important, is how they watch him.  Some people are very perceptive and would watch him closely to try to understand his body language and how he communicates.  I have found compassionate and highly perspective people to be the ones that my son most enjoys spending time with.
Please leave a comment and let me know if you have any advice in finding a good care giver!

Friday, November 5, 2010

Sample of Screening Questions For Care Giver

This is the document that I would email to potential care givers before I would set them up with an interview. 

Thank you for your interest in watching my eleven year old son with Aspergers.  I am looking for someone who is a caring, loving and compassionate person.  Someone with an open mind who realizes that we are not all the same and also realizes that others may have very different viewpoints of the world.  If this sounds like you, would you please take the time to read the following information and answer a few questions to help determine if you are a good fit for the job? 

My son is a wonderful child, but he takes a while to get to know someone.  He may not say more than one or two words to someone the first time that he meets them.  The longer he is with someone, the more open he becomes, and a healthy, positive relationship will begin to develop.   This is the reason that I am asking you to take the time to answer these questions:  I am hoping to find someone that will be a good match for my son for a couple of years.
How long are you looking for this position to continue? 
How long were you at your last couple places of work?

Shifts are typically 2 to 5 hours long. 
Where do you live? 
How long will the commute to Barrington be for you?
 Is this commute too long to justify working for 2 hours?

Many of the hours that you work would qualify to be paid by the State under the PASS program or Respite program.  Depending on your experience, they pay between $11 to $14 per hour.  They take into consideration your experience in the health care industry and time spent dealing with children with special needs children.  They also consider your educational background.
Do you have a problem receiving a check and having income taxes taken out? 
Would you pass a criminal background check?
What was your last hourly rate?
What hourly rate are you looking for?
What experience do you have working with children with autism?
What was the highest level of education you received and what was the name of the degree/ diploma?
And what school was this at?

The times that I may need someone to watch my son are Monday to Friday, after school from about 3:30pm until 6:00 pm.  Additionally, there are sometimes I may need someone on Friday night, Saturday afternoon, or Saturday night.
What hours are you available?
Are you always available at these times, or do you have other work/ family commitments?
How many hours per week are you looking for?
Is there a time that you would prefer to be home by on a Friday or Saturday night?

Because it takes my son a while to get to know someone, I was hoping that the three of us would be able to spend a few Saturday afternoons together before you watched him on your own.  
Are you able to start off with only a few hours a week and then gradually increase the number of hours per week as you get to know him?

Are there any questions you have about the position?  Is there anything else that you would like to say about yourself?

I really appreciate and respect the time you took in answering these questions!   I will be getting back to you a couple days after  you respond to try to set up a time to meet with you.

Thank you again!! 

Thursday, November 4, 2010


Over the years I have found the most difficult thing about parenting a child with autism is teaching them to listen to you.  Thankfully, as my son continues to grow and develop with time, the better he understand and listens to what I am telling him.  Unfortunately, even now, I sometimes have a hard time keeping his attention.
As I described in Communicating with an Autistic Child, there are difficulties in connecting with your child that go far beyond improving their vocabulary.  Not only is it difficult to understand where they are coming from, it is excruciatingly difficult to capture their attention long enough to convey what you so desperately need them to hear.  If he is talking about a particular subject, it can be difficult to have him focus on what I am saying and have him listen to me. 
Often, as a parent, I am concerned about all of the things that I need to teach my child: How can I teach him when he doesn’t listen to me?  What do I do when he is so distracted by the book he is reading that he doesn’t hear what I am saying?
As the saying goes, communication is a two way street.  As I tried to find ways to truly connect to my son, I have found that by taking the time and opening my mind to really listen to him, I find that we communicate much better.  For the past few days, he has been refusing to where his jacket into school.  He would only wear it in the car, and then take it off to run into the building.  Since it is getting colder outside, and he has had the sniffles, I tried to insist that he wear it.  He was giving me all of these reasons that it was not necessary to wear the jacket.  How it isn’t that cold out yet, how the walk from the car to the school isn’t that far.  Finally, I said that he could go into the school this morning, but that we would discuss this tonight and he was going to have to find a jacket he will wear.  And, believe it or not, I finally found the real reason:  he thought the jacket was a women’s jacket.  I wore it once or twice, so therefore it must be for women, and he doesn’t want to wear women’s clothing. 
A simple misunderstanding that is finally cleared away may sound normal, but for the parent of someone as unique as my son, the fact that we found the underlying reason, to me, is simply wonderful.  How many times when he was younger did I flat out insist that he do something simply because I didn’t know what was going on?  In my post Sensory Deprivation, I describe a particularly harrowing experience where I later discovered why he was fighting so hard not to go to school.  At the next school he attended, when he was having difficulty riding the bus into school, I later found out it was because another special needs child on the bus was making noise.  When I understood what was going on, I was able to fix his concern with noise reduction headphones, and he no longer has any problems riding the school bus.  (For a list of other ideas about riding the school bus, please read my post 10 Ways to Help your Autistic Child Ride the Bus)
As time has passed and I look back at the strides that have been made in teaching my child to listen to me, I realize that the improvements he has made are tied to my own improvement in listening to him.  I wish that I had simple advice to give to the parents of young autistic children, or parents of children who are on the more severe side of the spectrum, but all I have to offer you is hope.  I wish that when he was younger, that I had known that eventually the two of us would figure out a way to understand each other.  All of the frustration and angst would have been so much easier to handle – so please believe, things will be better  J