Summer School

Summer school has finally come to a close.  Bryce had an up and down time with it and if I had to do it over again, I’m not sure we would have enrolled him.  It was a wonderful facility with great teachers and staff.  The program was very hi-tech and well constructed.  But, it was long.  Driving 25 miles one-way, four days a week for eight weeks was extremely tiring and costly.  Even Bryce tired of it half way through.  He reverted back to his mannerisms when he was a baby.  He would throw himself on the floor when we arrived.  He would cling to me like Saran Wrap.  He would scream and cry and beg me to not leave.  I found myself reliving the nightmare of his first few years of life whenever I would try to leave him.  After we moved into our new house, he seemed to be better.  He was anxious to tell the teachers about his new room and his new “playground”.  With a snap of a finger, Bryce was back to his old self.  It is quite alarming how quick the emotions changed, but am thankful none the less.  And now it is over.  He has a two week break before he begins kindergarten.  I don’t really want to get into that.  Let’s just say everyone should buy stock in Kleenex because there will be alot of it purchased for August 22.

Even though by Thursday of each week I was dragging my butt to get Bryce ready to go, there are some things I will miss about taking him to school.  Here are my top ten reasons of what I will miss about summer school:

10.  Spending some one on one time with Bryce.

9.   Listening to Bill Cunningham on 700 WLW.

8.   Being able to leisurely browse in stores without   screaming children in tow.        

7.   Reading a book that doesn’t begin “One Fish, Two Fish, Red Fish, Blue Fish”

6.   Not having to referee any big time wrestling matches.

5.   A&W’s chili cheese fries….yummy!

4.   Saying ‘Hi’ to Phil the Wal-Mart greeter.

3.   Not hearing “MOM” every 3 seconds.

2.   McDonald’s vanilla iced coffee.

1.   2 1/2 hours of pure uninterrupted silence.   

Let’s Not Fight Over the Cause, Instead, Fight For the Cure

OK – I am feeling a bit feisty today so let me see how many people I can get riled up.  Immunizations do not cause autism!!  Yeah – I’ve preached on this subject before but until I can see hard proof on paper in front of my inquiring brown eyes, I’m sticking with my gut feeling:  IMMUNIZATIONS DO NOT CAUSE AUTISM!

A few nights ago I read on the scrolling screen below the nightly news people that a judge was trying to decide if an autism related case should go to court.  Apparently a woman in D.C. wants to sue a pharmaceutical company and the government because an immunization shot gave her daughter autism.  Autism is directly correlated with the neurological functions of the brain.  This malfunction is already in place when the child is born and because of it not working properly autism and other developmental disabilities can come into play.

Bryce is attending a summer school progam that is geared towards children who will begin Kindergarten this fall.  The school, The Nicholas School, teaches K-8 during the regular school year to children who have neurological disabilities.  This is the only children they accept.  No typical children to serve as role models, just the children who are in need of therapeutic learning.  When we went to the open house, I was blown away.  Very high tech equipment and an extremely knowledgable staff.  We were given literature to read before the first day of summer school.  One of the papers outlined the 4 steps to neurological growth from birth.  It started with a baby following a parent with their eyes and responding with cries to ending with talking and walking at 18 months of age.  It explained what the brain function was for each step of the way and what happens when the brain has been slightly damaged or altered and is unable to relay messages to the baby on how to accomplish each step.  The information laid out how they will use their therapy to not make the body do what it should but how it will teach the brain to do the right thing.  Best analogy that I can come up with is that you have a lamp that is not working properly.  You change the bulb and it still does not work.  Instead of banging it on the table to see if you can jumpstart a wire to make everything click, what you actually do is rewire the whole lamp from scratch to make it work.  This will take longer, but in the end you will have a better result.  So, in a nutshell, the brain is already messed up at birth.  An immunization is not given before birth so I don’t see why this is such a popular theory.  The brochure did list possible reasons for a cause: alcohol, drugs, x-rays in the first trimester and anesthetics.  I had to take insulin during the last trimester and I have always wondered if that had somehting to do with it, but I will probably never know.

I never heard what the outcome was on the D.C. mother.  I feel for her and understand her pain and frustration in parenting an autistic child, but how does going to court help the situation.  Even if she won, no amount of millions of dollars is going to change the way her daughter is.  Instead, let’s put that time, energy and money spent in the court system to a research facility to find a cure.  Let’s not battle each other over the CAUSE and instead UNITE FOR THE CURE.    

The Graduate

I have had a day to compose myself before I could sit down and write this.  Yesterday was a day that I will always remember:  Bryce graduated from Pre-school.  It was beautiful and moving and painfully poignant and fun all at the same time.  You know what I mean?  It’s like other days that will live on in your memory:  graduating high school/college, a first kiss, your wedding, the birth of your first child, the first day of school for your first born and then for the baby of the brood.  It was very emotional and really, I did not see it coming.  I knew I would feel very proud and happy for him, but I was not ready for the floodgates to open.  I kept pinching my hand so that I would not call attention to myself as I was trying to control the river of tears that were flowing from my eyes.  There were 124 students and I did not see one other parent as choked up as I.

The school has a ratio for special needs children versus “typical children” in each classroom.  Each teacher has approximately 8 special needs children with 4 typical children acting as “role models”.  So, not all of the children yesterday were special needs, but it didn’t matter, because I think that everyone just saw a large group of excited 5-6 years olds each wearing a colored graduation cap with a rainbow colored tassel.  The students paraded in and took their seats.  After the obligatory introduction, a song was sung and then four classes made their way to receive their diploma.  Each student marched through a balloon archway and made their way to their teacher who handed them a manilla folder with their name on it.  They lined up and were applauded and then took their seats.  Then another song was sung and more diplomas.  This was the ritual until all students had been recognized.  Then the lights were turned off in the gymnasium and each child had a flashlight that they used while they sang, “This Little Light of Mine”.  Cue tears.  The lights then remained off while a power point presentation was shown on a huge screen.  Cue the sentimental music from Lee Ann Womak, Nat King Cole and others.  With the music serving as a background, a picture was shown of each student sometime during the school year with their name in big bright colors.  Some were in the classroom while others were shown with their happy, smiling faces on the playground, which was the case for Bryce.  Cue many, many more tears.  Then the lights came back on and refreshments were ready to be devoured by a lot of hungry little children……and parents, too!

When we returned home, I told Chuck that I will never make it through the first day of kindergarten.  After he left to go back to work, I went to the safe-haven of my bed and cried my eyes out.  Even now, I am welling up.  To witness Bryce’s first day of Wee School and see the young man he was at the ceremony was quite a transformation.  He is not yet a “typical” student and he may never be, but he has made leaps and bounds towards striving to be better and integrate himself amongst others his age.  Three years ago, Bryce had no language skills, no social skills, very little eye contact and was lost on so many different levels.  Yesterday, I saw a little boy who was excited and anxious; a little boy who was tapping his friend’s shoulder to point out that another little boy had the same shirt on as him; a little boy who was telling his friend Tyler ”see Brady, he my brother”(how he could see us in the nosebleed section, I’ll never know!) and a little boy who wore a smile the size of the quarter moon.  Here was a boy that couldn’t sit still and didn’t want to be near others three years ago and with the aid of a social story that his teacher wrote for him, sat through the entire program happy as a clam.

He did it.  Iknow to some it may seem like just a silly little story with an overprotective mother who needs to get her head examined, but it really is so much more.  He did it.  He walked by himself through an archway towards his teacher without someone holding his hand.  He sat in a chair for an hour without a big fuss.  He participated in the songs.  He physically touched other people.  He did not wince at the noise and change of lighting.  HE SMILED WITH JOY IN HIS EYES AND IN HIS HEART!!!  He did it – my son - the graduate.   

Joy Behar is my Hero!

Wow, I never thought I would ever utter those words.  This woman and I have extremely different views on so many topics that I never felt like I would be rooting for her in a hot topic discussion on The View.  One thing led to another and autism and vaccinations was brought up.  Rosie said(I paraphrase) that the mercury in the vaccinations seems to be a possible cause for the autism.  It became more apparent between the years of 1991 through 1995 and that the government did a recall on those mercury laced vaccines BUT did not recall ALL of them.  Joy responded, with the question if there was mercury in the vaccines and this is linked to autism, then how come not all children who were vaccinated during the 91-95 time period did not acquire this disorder.   I swear I jumped up from the recliner and started screaming YES  YES YES YES at the television.  Finally another person who is thinking the same way I am about all of this.  The fact that it was Joy was unbelievable, but who cares.  Another living, breathing human being was speaking my thought on national television.  Then in the background Elisabeth says that a child who was given a tainted vaccine coupled with him or her being predisposed with a certain chemical make-up could be more of a target(again paraphrasing).  But, I don’t think anyone really heard what she said because by this point they were all talking at once.  I also agree with Elisabeth.  A chemical make-up of a child is what starts the ball rolling on the path towards autism.  Of course that is my very humble opinion. 

Jenny McCarthy was a guest co-host last week and she “confirmed” that her 5 year old son is autistic.  Why she had to “confirm” to the American public is beyond me, but she has written a new book about this and will be back in the fall to talk about it.  She used words like “my big mouth” and “blow the cover off” in describing how she would be addressing the issue.  This has led me to believe that she is journeying down Vaccination Road and I am very sorry to hear that,  if that is the case.  My blood just boils when I hear people blaming this on the mercury because they are not scientists, they are people like me.  Everyone is entitled to their opinion but, I also feel like they don’t want to look at this with an open mind.  You may say that I am not being the open-minded one.  I am.  I realize that the vaccine could be a possibility.  I also realize that in my son’s case the pieces don’t all fit together.     

So, for today, JoyBehar you are my HERO!  

Immunizations=Autism – I Don’t Think So

I have been avoiding this topic like the plague, but it is time to delve right in with my humble opinion.  Autism does not have a cure – yet.  We do not know for SURE what causes autism  The major debate is between mercury based vaccinations and neurology. 

 Autism sparks different kinds of tics or repetitive movements and certain odd behaviors.  For instance, when we go to Wendy’s for lunch, Bryce has the chicken nugget kids meal with chocolate milk.  He takes a napkin and lays it out flat and puts his nuggets in a straight line at the top of the napkin.  Next, he takes his french fries and puts them in a neat order under the nuggets.  After that, he drinks all of his milk, then eats the nuggets and finishes off by eating all of the fries.  Interestingly enough, I learned that when I was very young, I would follow a similar pattern.  For example, if we were having fried chicken, mashed potatoes and green beans, I  would have to have them in separate sections on my plate and I would eat each food in it’s entirety before moving on to the next food on my plate and the plate had to be sitting in front of me in a specific way.  Coincidence or freak of nature?   

 Next, autism also is in connection with sensory related issues: not wanting to touch certain things because of the feel or texture, not wanting to get dirty or be held tight or in a cramped place.  Bryce hates to get dirty.  We were in an elevator once and the gentleman riding with us commented on how clean Bryce’s shoes were and that they must be brand new.  They were not.  He had had that pair of shoes for six moths.  On the contrary, Brady can take a pair of tennis shoes and have them ragged and worn within six weeks.  Bryce also has a problem feeling the texture of shaving cream, so he never wants Cool Whip on his ice cream , jello, etc.  He also had a problem with play-dough, but that is slowly fading away.  Even the feel of bubbles on his face would send him into a frenzy.  He never liked being held as a baby and does not like to be tucked in too tight at night.  So, I had a problem with getting dirty when I was young and still to this day I have to “suck it up” so as to set a good example for the kids.  I am claustrophobic.  I can’t stand touching a chalkboard and definitely go over the edge with the fingernails on the chalkboard sound.  Coincidence or not? 

I believe that in my childs case, vaccinations were not the cause.  Autism does involve the brain.  A persons brain function is a direct result of their actions.  An autistic person needs to learn how to re-wire their brain to be able to perform everyday tasks.  In the structure of the brain is where the trouble lies.  I don’t believe a vaccination can cause that.  I believe that they are born that way and that heredity plays a part in it. 

Dr. Temple Grandin says in her book(and I paraphrase)that their is a little bit of autism in all of us.  People who work with computers and hi-tech equipment probably have their own little quirks that are not large enough to register on the autism radar but they have them nonetheless.  If you would go back through their genealogy you would probably find someone who had these same quirks only on a more significant level.  I had such definitive behaviors when I was a child that it is absolutely possible that I passed them onto my children.  Am I considered autistic?  No, but who is to say that the combination of my behaviors and my husbands genetic make-up did not produce Bryce, an autistic individual.  The vaccination theory does not sit well with me because all three of my children had their immunizations in different parts of the state.  If we did a study of all the infants who were immunized where Bryce was, how many of them are autistic now?  Isn’t that what they are claiming?  That mercury in these vaccinations is causing the problem.  So, are the pharmaceutical companies who make the vaccines putting mercury in a select few so that there are autistic children  all over the country or are they putting it in the same batch that would be distributed to the same area and cause an epidemic in that particular part of the country?  It seems to me that the latter would be the easiest.  Of course, I am not a scientist, or a pharmacist or a doctor.  I am a mother who has an autistic child who believes that his shot of MMR or DTaP or polio did not cause him to be this way.  It seems that now a days everyone is ready for a witch hunt in this country.  Someone is covering for someone else because of the almighty dollar.  I thought that they had even stopped producing the mercury vaccinations?  So what does anybody have to gain?  Pharmaceutical companies are just an easy target because of the “enhanced truth” that the government is protecting them.  I think everyone that has an autistic child should just stop and breathe.  We may never find the 100% unequivocal truth of how autism is caused.  Instead let’s take that energy of blaming others and re-focus it into finding a CURE.

Helpful Tools for Autistic Children

I just thought I would pass along  a few websites that Bryce’s teacher gave me.  I was looking for materials to use over the summer to help him get used to the idea of Kindergarten and helping him express himself in a more clear cut manner.  I do not endorse any of the medicinal products only the materials used for learning.  They are as follows:

www.autismcoach.com

www.greenhousepub.com

The greenhouse publications website is not necessarily for children with autism.  In fact, Brady, with his speech delay and lack of social skills will benefit from these materials as well.   I will try to make up a more comprehensive list and post that later. 

Kindergarten Screening

This week, Bryce went to Kindergarten screening.  I hardly slept the night before.  I was on pins and needles and my head would not stop thinking about all of the possible or impossible situations he could face the next morning.  We had to be at the elementary by 8am.  Bryce’s pre-school teacher was waiting for us there.  She would be his shadow at each station.  The elementary had requested an aid for him in case of any speech problems or having trouble following the directions.  I wanted her there to help him retain his composure and to put my mind at ease.  We did not have to go to the screening since he will be on an IEP but, I wanted him to go through this process.  The reasons for my decision were three-fold.  First, this would give Bryce another opportunity to visit the school and see some of the teachers and administrators.  Second it was going to help him with learning to sit in a controlled environment and follow directions.  Third, I want him to lead as close to a normal life as possible.  I don’t want him to ever use this diagnosis as a “crutch” in life. 

Once we arrived, I was shuffled into the “holding area”.  We learned about the rules of the school, important dates, busing, health issues, etc.  Finally, we were told the testing criteria that they were using that day.  It is a state issued test-KRAL:Kindergarten Readiness Awareness Literacy.  The test has a possible 29 points and last years screeners averaged a 21. It consisted of sentence repetition, rhyming, phonics, alphabet knowledge and simple social questions.  I knew that the rhyming sections were not going to go well but, I thought he might be able to hold his own elsewhere.  There were also other sections on Math, Fine Motor(hold a pencil correctly, copy shapes from simple forms to complex groupings), hearing, vision, language and speech.  After each child had finished their testing, one by one we were called to speak with someone and go over the results.  At the end of that the official(teacher, guidance counselor, principal)stated their opinion on what areas of difficulty the child was having, what to work on and whether or not the parents should consider holding the student back another year.  In Bryce’s case, he has to go this year.  By law, his age requires that he attend Kindergarten this fall, so no matter how bad he did, they were going to see him in a seat come August.  First, we went over the KRAL results.  He got a 16 out of 29.  I was right about the rhyming but, he also had problems with the social questions and phonic awareness(meaning that he could not identify what letter words started with, such as “zipper” starts with “z”-actually that is the one he knew).  His math score was great and hearing was fine.  He was very “excited” during the language portion and speech – well that was a given-he will be attending speech therapy.  His fine motor was awesome.  He drew all of the pictures and even did an excellent job on the complex ones.  I was told that he did the best in that section than any of the other students during his session.  I know, I am bragging but, it felt good that he had excelled in an area.  His vision showed a possible problem in his left eye.  He has had regular check-ups since he was three years old and is due for one this year so we will see if there is actually a problem.

Overall, Bryce had a great time and enjoyed being at the school.  His teacher said that under the circumstances he did well.  He met Allison’s Kindergarten teacher and as we leaving, she and a few other women told me how cute he is(I know another bragging, but hey, I think he’s cute, too).  When we got home I sat down and absorbed everything from the past two hours.  I can’t explain my emotions about this.  I was happy that he like being there and did not have a horrible crisis with anything.  I was happy that he had areas that he excelled in.  I was confident in knowing that I had pinpointed his weaknesses before we went.  But, there was a hint of sadness and remorse.  As I fought the tears, I told my Mom that you know that he is not perfect and you know that he has a disability.  You know that he will have a hard time of it and there will be many struggles ahead, but to hear a professional actually verbalize these things to you is very overwhelming.  It’s like, as long as it is not said out loud it may not actually be real but, as soon as that first word is spoken, you realize that, in fact, it is true.  Bryce is autistic.  Bryce is going to Kindergarten.  Bryce will have roadblocks to face.  There I said it.  It is real.           

Bryce’s Journey II

To get you caught up, Bryce started in the Wee School in the fall of 2003.  When he turned 3 he was to move onto the pre-school after the next break, in this case after Christmas break.  This is a state standard due to age.  I formally requested that since we had only been attending for 3 months if after the break we could return to the Wee School.  I was not ready to put him on a bus and send him off to school when he was unable to communicate and I was at my wit’s end.  The administration talked with his teacher and she agreed with me that it would be more beneficial for Bryce to stay with her until the end of the current school year and then the next fall start at the pre-school.  Everyone in his class moved on in January, so for a few weeks Bryce had all the therapists and teacher to himself until new screeners arrived.  It was great and he benefited from this one on one attention.  His teacher and I were talking one day and she very timidly asked me if anyone had ever said that Bryce might be autistic.  The floodgates opened and I said no, but I had been wondering myself.  She went and got a form and said that I should take it home and fill out the parent portion and bring it back and she would do the teacher portion.  The form was called the GARS test.  It is a questionnaire that is used by developmental specialists to see if a child could possibly be autistic.  If a child scores a particularway then seeing a specialist is in order.  After all questions had been answered, his teacher scored it and he was showing autistic tendencies.  Our next step was to have the school and his family doctor make a referral to the Children’s Hospital for an appointment with a pediatric developmental disability specialist.  After receiving all of their paperwork,  three months later we had an appointment.  Chuck, Bryce and I went to see Dr. K in May of 2004.  What a wonderful lady, very bright, chipper, related well to Bryce and us and was extremely down to earth and did not speak above us.  After her evaluation of him, she started talking to us.  I’ll never forget her words.  She said he was smart but it was a hidden feature because he does not know how to communicate with the outside world.  He did not look you in the eye when he was spoken to and he would just play by himself and seemed rather content with it.  She finally told us that the autism spectrum is rather large and contains many different types of people.  Bryce is autistic but on the low end, which is a good sign because he has a better chance – with the proper therapy –  to  succeed in life.  I knew this all along but, again, to have a professional tell you this to your face was crippling.  Somehow, hearing those words come out of Dr. K’s mouth made it real and I was not ready for “real”, I wanted to stay in”what might be”.  We had to take Bryce for some blood work and an appointment was scheduled to come back to the hospital to have an EEG done to check for seizures.  Fortunately, all tests came back negative and we learned that he is allergic to the sedative they used for the EEG.  That whole process was a nightmare – we stayed at a Ronald McDonald house the night before because he was to have only a few hours of sleep and he fought with the nurses, had a bad reaction to the medicine and overall it was horrible. 

After the results were seen by Dr. K, she then told us to make sure Bryce could attend a summer school and receive additional speech therapy at our local hospital.  The Wee school did have a three week summer program and I did get Bryce evaluated at the hospital for speech.  He started going to the hospital twice a week for 30 minutes to see his therapist, Beth.  Another lovely person on this journey.  She is great with children, truly genuine and wonderful at what she does.  Bryce still sees Beth or her colleague every week.  So, Bryce was enjoying all of his schooling and therapy and I could see glimmers of hope.  But, what I didn’t notice right away was the toll it was taking on the rest of the family.  I still had a 6 year old and a baby not quite 2 at home.  I had to budget my time so that the others felt as if their needs were being met and didn’t feel slighted.  I worried that Allison in particular felt as if Bryce were my favorite because of how much time I spent with him and I didn’t want Brady developing bad habits because of lack of time with me.  I was working, still, and Chuck really was only home during lunch and after the kids were in bed and every other weekend .  So his time with the kids was limited.  I noticed that after the kids would finish supper each night, I would just sit at the table and cry.  One night in July, I thought I was having a heart attack.  I had alot of pain and had trouble catching my breath.  I couldn’t get a hold of Chuck(he was in town at our local fair)so I called one of my friends.  She rushed over and we called the squad.  Once I was at the hospital and tests had been run, they ruled out that I had had a heart attack.  They wanted to keep me over night for further evaluation and more tests so that is what I did.  I had a stress test, and EKG and lots of blood work.  The doctor came in later the next day and said that it appeared to be my gallbladder acting up and it really needed to come out in the near future.  She asked me how I was doing and I began to cry.  I told her about Bryce and crying at the dinner table and she said that we need to get you some help.  A few minutes later a nurse came in with some pills and the doctor told me that it was very obvious that I was suffering from depression and that I should take this medication and see if we could get this under control(I will tackle this issue in another entry).  She told me that I am not Wonder Mother and I need to ask for help and then allow people to help me.  This became harder than it sounds.  Childrens needs never go away and I found it hard to find the right people to ask for help.  I just decided that as long as I was on the meds, I could do this.   August came and Bryce was going to get on a school bus and go to pre-school by himself.  Another new adventure with more hurdles to overcome.  Good place to stop.

Again, though I must stress that a support system is a must.  I keep preaching this but in reality I still do not have one.  There are many days that I am doing this all by myself and it is very lonely.  Good friends are either to busy or to far away and my family is either located in another state or just like to keep themselves sheltered from the truth.        

Bryce’s Journey

I started this blog in hopes that somebody somewhere would read it and maybe help a child in need.  I wanted to keep a log of the trials and tribulations that we go through in getting Bryce to connect and succeed in the outside world.  I thought if a mother suspected her child had a problem she would find comfort in my words – knowing that at the end of the day it would all be okay – even if you had to look back in time and realize that.  But, my problem is that when I am on an upswing, I find it hard to write the words to describe this journey.  If my mood is all pastels then I am reluctant to go down a path that is going to change me to all darks.  Thinking about the past and what we are doing now in present day for Bryce does change my mood and I had some very bad days last week and I have finally turned the corner, so I am not ready to go back there.  That being said, I will tell a few things.

Bryce’s vocabulary was extremely limited and there was alot of “jargon”.  There were days when I could not figure out what he wanted and this would in turn frustrate him.  I recall one afternoon when he wanted a snack.  I asked him almost every food we had and he kept shaking his head no.  I felt so helpless that I could not figure out what he wanted.  He saw my despair and he reacted to that because he was frustrated as well.  It ended up we both sat on the kitchen floor in tears because we could not communicate.  This went on for 30 minutes(not a lie!)until I figured out what he wanted.  I relayed this to his teacher the next day and she said that we needed to find an alternative way to communicate.  She asked me to write down EVERYTHING that Bryce would come in contact with: food, medicine, daily rituals so that she could make up pictures for those words.  This is called the PECS system and it worked wonderfully.  They used it at school so it was easy to work it into our daily lives at home.  I then put these cards on the refrigerator and he could point to what he wanted.  There were even cards for happy, sad, angry, mouth closed(which is what I used when he was screaming or out of control).  Bryce was just over 3 years old when we started and within a few months he started picking up that what he did at school was the same thing he could do at home.  What makes this so hard is that, I knew how I was feeling, but I would become so upset because I knew he had to feel 10 times worse.  Having words form in your head and not being able to get them to come out of your mouth; seeing your mother get upset because she doesn’t understand you what torture for such a young soul.  Not a day would go by that I wouldn’t agonize over what to do to make things right(still do).  I knew I had a backbone and I knew I needed to find it because Bryce couldn’t help himself so I had to be his advocate and if I was going to do that I had to get my act together.  The next step that I took ended up being the best for Bryce but definietly took its toll on me.  This is where I stop for now, but let me conclude that as a mother you need to find yourself the greatest support system there is, because as the caregiver you need to be able to have the time to wind down and build yourself up again.  Trust me.  

Dr. Temple Grandin

As an early birthday present my Mom gave me Dr. Temple Grandin and Sean Barron’s book entitled “Unwritten Rules of Social Relationships”.  It is a book for parents and I suppose young adults about figuring out how a child within the  autism spectrum deals with social encounters and behaviors.  On my first night of reading, I only made it to page 19, but I have implemented two changes in our lifestyle.  The book is 377 pages long.  If I have made 2 changes by page 19 can you imagine what I will do by page 377?  Dr. Grandin was on “The View” a few weeks ago when they did an hour long show about autism.  It was the first time I had heard her speak and I was moved beyond recognition.  Her manner of speaking and her gesturing reminded me of Bryce that it was almost eerie.  I felt like I could be her friend but, as I read the book I realized it was her Mother that I could really be friends with.  Her mother decided that from the very beginning that DTG(abbreviate now)would live as normal of a life as possible and would not be treated different by her family or her peers.  DTG was expected to first and foremost, have good manners.  My heart skipped a beat and I had a huge smile on my face when I read that because her mother essentially validated what I have been preaching all along to Bryce’s teachers.  I want him to have good manners because it is important for him to learn at least this lesson of life.  When Bryce was 3 and was going to his first pre-school, they had a snack time which was to teach the kids how to act at the dinner table and to learn to request food and drink in a nice way and to address sensory issues.  Even though Bryce used the picture system and could not verbally request his wants, I always told him after he received his snack to say “Thank you”.  Other mothers thought I was crazy for enforcing that with him.  Why make him feel pressure to say thank you when he can’t say “drink” or “pretzel”?  Well, he couldn’t say any of those words but I thought that if after he received his pretzels that I would say “say thank you”,it would become lodged in his brain.  This way when his words did come he would then remember “oh, I said pretzel and thank you comes after that”. Well guess what?  It worked.  He says please and thank you and he UNDERSTANDS what it means.  They are not just words to him, they mean something. 

It’s important for all kids to have good manners.  DTG says that it is lacking in our society today.  She grew up in the 50’s and 60’s and things were different then.  But, well behaved children never go out of style.  She says that her mother made it known that if she did something wrong that there were consequences.  This was known upfront and was enforced.  I agree with this.  Her mother also knew when her daughter was acting up out of spite and when her actions were something that she couldn’t control because of her surroundings.  That is huge.  As a parent you have to recognize when they are misbehaving and when it is just not their fault.  That has become a huge hurdle to conquer.  The roughest is when we are in public.  People can be rude.  Bryce can be out of sorts and acting up and people give me dirty looks or whisper to someone else and point at us.  I’m 80% over that.  Most of the time I think the hell with them.  That 20% is what I need to overcome.  My husband, though, is not there yet.  He can not handle a public uproar.  I don’t know if this is because he does not get as much time with him or if this is a “man thing” and he’s not as nurturing.     

If you have a child within the autism spectrum disorder or know someone who does, this book is a must read.  Our lives have been designed to learn from others and to consume their knowledge of what works and what doesn’t.  Like I said, I’m only on page 19 right now, but in my eyes Dr. Temple Grandin and her mother are heroes.