Tears

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? 

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!

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!! 

Listening

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

The Cause of Autism

The reason I am discussing this is to give something for parents with a new born to think about.  For parents who have a child who has already been diagnosed with autism, please don’t perceive this as encouragement in any way to try some of the dangerous cures that are floating out there on the Internet.

There is much disagreement on the subject of the cause for autism, so I will try to clear away some of the smoke.

There has been some evidence that autism is a genetic disease.  They asked me many questions about this when they first diagnosed my son, eventually checking that he had a family background of autism, even though NO ONE IN MY NOR MY HUSBANDS FAMILY EVER HAD AUTISM.  They did so, because I mentioned that my father was unusually intelligent.  He not only has a medical degree, but he also has a masters in aeronautical engineering.  I find this funny, as if my father has autism, then I want it too.  Neither my father, nor anyone else in our family has had any kind of debilitating sensory issues like my son.  My father does not have trouble with communicating, speech, or languages, but has, in fact, studied sixteen languages.  But the professionals, for their epidemiology studies, check off that my son had a history of autism in his family?  Why did they do this?  I don’t know, other than it is true that people often find the answer that they are looking for, and the current assumption in the medical community is that autism is a genetic disease, so that is what they look to prove.

Because so many have concluded that autism has a genetic component, I will acquiesce on this point … although I firmly believe that there has to be a very strong environmental trigger.  If my father was autistic, like they marked down, and I am also genetically predisposed, why didn’t either of us panic in the classroom when we were five years old?  Why didn’t we get up and start dancing around and completely ignore the teacher?  If there is a genetic trait that made my son more susceptible, it was a trait that never manifested in any of his other family members.  So the question remains, what was the trigger?

Additionally, they have shown a significant rise in the cases of autism in the main population of some of the developed countries, Unites States of America included.  There are many of these studies, easily found in a web search, all with slightly different numbers.  Over forty years ago, 1 child in 10,000 was diagnosed with autism.  Now, 1 child in 150 (some papers show 1 in 100, the numbers vary by study).  Whatever the paper you look at, the number of cases is on the rise.  One crazy explanation that they have for this is that the professionals are better at diagnosing these children now.  I know everyone likes to pat themselves on the back, but I have never heard a more silly explanation, as many who have an autistic child will tell you.  When I was younger, there was a special needs program at our school, but none of those children’s symptoms followed the pattern o f my son’s.  My son cannot understand what you mean when you give him a simple direction, but then he will memorize all of the planets in our solar system, as well as their atmosphere and the weather patterns on each planet.  I would have been blown away if one of the special needs children that I knew when I was my sons age was able to do that.  Furthermore, the number of overall children entering the special needs program is mushrooming and the school systems are having a very difficult time handling all of the autistic children that are being enrolled.  If it was simply better diagnosis on the part of the professional community, then there would not be an overall increase in the number of children with special needs.  Essentially, my son never would have been able to attend a “regular” classroom like I did, so he would have been diagnosed with something, so there should not be an overall rise.  Finally, if you have cases where there are identical twins and one has autism and one does not, there has to be an environmental trigger.

The main point that I am trying to show is:  There may be a genetic predisposition for autism, but there is also an environmental trigger, and this trigger is increasing over the past couple decades in our modern industrialized nations.

Now, what is the environmental trigger?  Unfortunately, they don’t know.  There has been speculation that it is vaccines.  This makes sense to me as my son received twice as many vaccines by the age of two as I did.  Many do not believe it is vaccinations because the epidemiology studies that were done suggested that there was no link between thimerosal and autism.  Other studies show that there is no link between the Measles Mumps and Rubella shots and autism.  My suspicion is that it is not one vaccine in particular, but rather an overloading of the immune system that causes autism.  Perhaps that is the reason that they are not able to link it to one particular vaccine.  Additionally, some in the medical community are starting to regard autism as an immunological disorder, putting the vaccines back on top as a list of suspected triggers.  I would be interested to see an epidemiology study that shows the frequency of autism in children who receive all of these shots by the age of two versus children who receive the shots over a longer period of time.  There is a higher amount of children who are afflicted by autism in the Northern part of the United States than in the South, a possible explanation for this is that the culprit could be the combination of vaccines and another illness at the same time.  In essence, an overload of the immune system is caused not by the vaccines alone, but by the other illnesses that the child comes into contact with.  If most children acquire autism by the age of two years old, why not give them the MMR shot at the age of three?  When one considers how just a few decades ago there were studies that showed that smoking cigarettes was good for you, it is reasonable to question the assertion that the epidemiology study proves that autism is not triggered by having too many vaccines and that overload the young child’s immune system could be the cause.

So, in summation:  The evidence suggests that there is no link between autism and high number of vaccines received by the age of two, but it is not conclusive.  Therefore, it would be advisable to 1) Try to have your child immunized during the summertime when their immune system will not be fighting off as many other infections.  2) Under advice of doctor, ask about postponing some of the immunizations.  Simply see if it is possible to have that shot at age of three rather than back to back with the booster that they just gave your child.  I would not recommend forgoing the vaccines all together, as this would be exposing your child to other very real illnesses.

Are there other possible triggers besides vaccines?  Yes, of course.  I would be suspicious of anything that has surfaced in industrialized societies in the past two decades.  As crazy as it sounds, if I could go back in time, I would keep my son away from cell phones, microwaves, and food warmed in plastic containers until he reached the age of three and was out of the danger zone for developing autism.  And, until they find conclusively what in our environment triggers autism, I would recommend that anyone with a baby does the same thing.

Seven Ways to Help Your Autistic Child to be More Comfortable at School

1)      Ensure that you have given the teacher a complete change of clothing for your child.  Many autistic children have sensory issues and would have a hard time coping if something spills on them and they are unable to change.

2)      See if you can find some foods that have long shelf lives, and keep them as a back-up lunch.  My son does not like school lunches and has panicked before when I forgot his lunch in the morning (I know, bad Mommy award).  He likes trail mix and juice boxes, both of which stay good for a few months.  So, now I have a back up “lunch” in his back pack, just in case I forget his lunch, or he doesn’t like what is in it.

3)      Make a list of things that upset your child and send them into the school.  Although special needs teachers have extra training, they may not have had special training for autistic children.  Or, there may be a teacher’s assistant or a bus monitor that has received no special training with autistic children and doesn’t understand your child’s needs.  It is always better to have a list that mentions things like, my child will become upset if you touch their stuff without asking, so the adults are aware of your child’s needs.

4)      Make a list of all of the things that your child loves and give it to the teacher.  Include all the little things, like bouncing a ball against the wall.  The school will have you fill out many, many forms and more than one of these forms will ask for this information.  You will be better off having a list that you can reference on your computer at home as this list can grow and develop over time.

5)      Have the teachers send a list home of all of the “rules” of the school.  These rules should include things like:

a.       Don’t chew gum in school.

b.      No cell phones.

c.       No hand held computer games.

d.   No special blankets or stuffed animals.

e.   The child should not try to leave the room without having an adult go with them.

f.   The child should not stand up without raising their hand.       

       These rules are important to know so that you don’t send your child into a situation where you have told them “don’t lose this!” and then they have a teacher’s assistant try to take it away.  You would be amazed at the number of rules these school’s have – and your child will probably have a hard time communicating with them to explain their point of view.  Then they may become intimidated and cry.  Put in writing a letter to the school explaining to them an autistic child’s difficulty with communicating and the need for you to have all of their rules in writing.  Also, request that the rules that impact your child are not changed without first discussing the changes with you.  Review all the rules with your child at home.

6)      Understand the power of the IEP.  If your child does not have an IEP, request one.  If you feel that your child has a need that is not being meet, request an extra IEP meeting.  If the meeting doesn’t go the way you would like, search the Internet for special needs parents support groups in your area.  There are many non-profit groups set up to help the parents navigate the special needs system … you want to find one and work with someone at this charitable organization that also has a special needs child of their own.  Think of them as a mentor, as a guide to finding out what programs are available for your child.

7)      Try to bring cookies or pastries to meetings that you have with the teachers.  If they do something nice, be certain to send a thank you note.  Although you may need to push the school to make proper accommodations for your child, you want to stay on a really positive ground with the people that deal directly with your child.  Since your child may have a hard time communicating with them, you want to make certain that you communicate really well with them.

      The factor that will have the greatest influence on your child's comfort will be your ability to communicate with the teachers at the school.  It is really good for you to be on the same page with them, even from before the time you enroll your child in the school program.  Please look at my post Sensory Deprivation for some important questions to ask before you choose a school for your child.

10 Ways to Help your Autistic Child Ride the Bus

1)      Try to follow the same pattern every day. If you normally get on the bus and escort your child to his seat, continue to do that. If you normally stand and wave good bye, continue to do that. Any changes that you need to make, let the child know ahead of time. “I will no longer be able to get on the bus with you, so today you will have to carry your backpack to your seat.”

2)      Many autistic children are sensitive to noises in their environment.   One of the best, albeit expensive, purchases that I made for my son was a noise reduction headphone.  One of the nice ones, one that cover the ears.

3)      Ensure that your child has a seat to themselves.  If the bus drives says that they don’t have it available, then request an IEP meeting and have it included as part of their plan.

4)      Purchase a hand held computer game, or a hand held DVD player, or find several books from the library that they really like so that they have entertainment on the bus ride.

5)      Transitions can be difficult for an autistic child.  To help them cope with this, play to their strength by getting them focused on something that they enjoy, like a movie or a show.  For a few days in a row, my son was having a particularly hard time getting onto the bus, so I started a show that he liked on a hand held DVD player five minutes before the bus arrived.  With the show going and his headphones on, he marched right onto the bus, completely focused on the hand held device.  Please make certain that the show is short enough so that it will end before the bus ride is over, otherwise they will have a hard time getting off of the bus.

6)      Ensure that they are not doing anything before the bus is coming that they will have to stop.  Do not have them watching a program on the TV (that they cannot bring with them on the bus) or have them playing with a toy, or a pet that they will have to leave behind.

7)      Be certain that they have plenty of time to board the bus when it comes.  As I said before, transitions can be difficult for an autistic child, so you want to ensure that you do not do anything to elevate them right before the bus arrives.  I have a few memories of trying to rush my son to be ready for the bus, only to have him freeze up.  Try to include enough time in your mornings so that rushing him is not necessary.

8)      Have the cell phone number of the school bus handy in case the bus is running late and your child is starting to become distracted, you can call to find out how much longer they will be.  This is also good if for some reason your child becomes upset right before the bus arrives.  This will give you a chance to explain to them that you need a few minutes for your child to calm down.  Although the bus drivers have a schedule to keep, sometimes they can pick up another child first and come back to get yours.  They may not be able to do this all the time, but if you have a few minutes for your child to calm down before you try to transition them, it will make for a much better day. 

9)      Have a discussion with the bus driver and the assistant about your child's needs.  If your child doesn’t like having his backpack touched by anyone, mention that to them so that they don’t try to grab it.  Make certain that they have your cell phone number.

10)   If the child is having a hard time and your schedule permits, drive him or her to school.




For other tips on dealing with autistic children, visit 101 Ways a Teacher Could Help a Child with Autism