My Difficult Journey in Helping My Son

"Many are so preoccupied w/what others think it defines their existence.It's fear based to be told & to accept that you are this or can only accomplish that. When we fixate externally it keeps us from truly knowing of ourselves & our destiny.Most fear looking inward for worry they won't find greatness, but when we stop allowing others to define our worth you'll see-greatness exists in us all, waiting to be expressed."

Recently a mom wrote me and said:

Wow, a lot has happen at the beginning of the year with my son who is 19 and has aspergers, but a mild form. He was recently certified as a Nursing Assistant at the end of August, now has a full time job working as a Direct Care staff at a group home and is driving now in his car back and forth to work. It is wild, If I had listened to other people such as educators and doctors, I would not have pushed my son enough to be the best he could be and to do things at the best of his abilities, he wouldn't be who he is now.  -Anonymous

Caleb, Chaz in middle, Ashley on right

I see what she is saying. I have to be careful, as I have been, to push Chaz the same way I push my younger ones to succeed. Of course we understand there is a spectrum and not all Aspergers are the same.  That makes a difference.  My son Chaz is high functioning but enough Aspergers that we have to have an IEP plan for him to do well in school.  We've tried working without one and it was disastrous.  In fact, one year I decided to not tell the school at all he was Aspergers.  That was a bad idea because they just called me constantly and he was always being punished for Aspergers type behavior.  Every time I spoke with this school, it was like fishing for things. They acted like I was their enemy and that I was trying to interfere with their school system and how things were set up.  NO, I am Chaz's parent and I have every right to know every single thing they are doing with my son.  Just to visit his class I had to put in a month's notice and have an appointment.  Chaz had the worst year ever with bullying and I just felt a pit in my stomach.  Kids were calling him a freak and he had no friends whatsoever. In fact, that was the year Chaz threatened to hurt himself more than any other year.  I was at my whits end and feeling like everything I had worked towards for Chaz  was crumbling.  At the end of the year, Chaz finally tells me that almost EVERY SINGLE day he was being placed outside the classroom and only allowed to hear the teacher, not see, during the lessons.  You know why this is wrong?  Well, a number of reasons but the biggest one would be that by halfway through the year I ended up telling them that Chaz had Aspergers Syndrome.  Did this change the way they worked with them?  No.  In fact, not only did they continue to leave him in the long, empty, white hallway, they questioned my parenting and required me to prove I had been helping Chaz in previous years. I explained to them my fears of telling them because of our bad past with schools. 

You see, in 1st grade, Chaz was put in a self contained classroom.  Chaz very quickly went downhill and was throwing chairs, turning over tables, and verbally abusing his teacher.  I was baffled because Chaz was nothing like this at home.  It was shocking to hear these reports.  Why was he this way at school and not this way at home?  Come to find out, this teacher didn't believe in Asperger Syndrome and just treated him as a bad kid only that needed to be contained. 


Well, because he was mostly put in a little room and not learning with the class the previous year, I had to have him repeat 1st grade but this time in a different school because we moved.  I thought it might be a good idea to have him placed in a regular classroom and just see what would come with it if I just explained he had Asperger Syndrome.  I was still very new to Aspergers Syndrome so this was the beginning of my journey. A very difficult time in my life.  Many, many, many tears. I loved my son with all my heart. I just felt like I couldn't reach him.  I had to hide the knives in my house because my little 6 year old precious boy was threatening to hurt himself.  Come to find out, this teacher didn't believe in Asperger Syndrome and just treated him as a bad kid only that needed to be contained.

Then a miracle happened. 

The classroom in his second year of first grade, just so HAPPENED, to be taught by a woman that had trained to work with Aspergers kids for 3 years in New York.  My jaw dropped when she told me.  This was purely by accident. She calmly told me she can work with Chaz. He gets to be in a regular classroom.  AND he was going to have someone sitting by him during reading and math to help him along.  She also new he had a hard time staying seated in those hard chairs and brought a cushion for him.  She made him a visual schedule of his day that was laminated. You see, Asperger kids see things in pictures.  She would makes pictures of his day on a paper, laminate it, then let him cross activities out on it as they were completed. She always gave him a warning when that activity would be ending.  She then made flashcards that were laminated, then punch a hole in them and connected to a string.  She made is a necklace where she could flip through the cards.  Instead of saying "Chaz, be quit".  She held up the card for him to see.  She explained that they process it faster when they see it visually.  She explained that there are anxiety issues.  Do not egg in them on in any way. For example:  Don't say "Okay Chaz, since you won't listen, instead of being in timeout for 5 minutes, you will be there for 6 minutes.  Okay Chaz. Now 7."  This will make him more and more upset.  I needed to encourage him GREATLY.  They already experience a lot of rejection at school and need someone loving and encouraging to come home to.  (This works for hubbies also. tee hee)  Ms Philips was my angel and I will forever be indebted to her.  Within one year my son went from throwing around chairs and turning over tables in class to sitting quietly in his seat and learning.  THAT's how I know what she said really worked.  She proved it to me and I think if my teachers would just take the time to learn some about Aspergers, they can really help these students in their classroom grow.  The ones that others rejected.  It's easy to just say "put them in a self contained classroom" and leave them there.  But guess what?  I asked Ms Philips why there was such a huge difference for Chaz. She said that Aspergers kids tend to copy behavior.  Chaz was watching the kids around him do the same.  Once you put him in a regular classroom environment that was much more calm, he would be more calm.  Well, that explains a lot and that is why every year I have fought to keep Chaz from going back to a self contained classroom. 

When that school changed their principal and started to go downhill, that wonderful teacher left a year later so I had to once again relocate Chaz and his younger siblings.  To keep from bouncing them around I homeschooled a couple of years and searched for schools. Chaz did very well home.  VERY WELL.  This year, in 4th grade, once again he's been blessed with a wonderful teacher. I was nervous at first as she didn't know much about Aspergers. The first semester was very, very rough but she was so open to ask questions and do whatever it took to help Chaz that she earned his trust.  Chaz has been rejected so many times that he figured she would also.  Well, she didn't give up and just taught and loved him.  He now writes her letters telling her "Thank You" often.  I am so grateful to her.

You are your child's advocate.

Do whatever it takes to fight for your child. Don't just trust whatever you hear and just think they always know what's best for your child.  A lot is at stake.  When I first found out Chaz had Aspergers Syndrome I had very little support. In fact, I had people telling me I was crazy, that I was pinning something bad on my son and ruining his life, that my son just had demons, etc. The list goes on.  So if you are experiencing the same, know you are not alone.  Just keep fighting for you child.  How much you wanna bet everything is gonna be okay?  At home I am careful not to make Chaz feel different in any way from his siblings. He knows he has a love and support.  He knows we expect him to be responsible with his actions in how he treats others.  I tell my son Chaz that having Aspergers Syndrome doesn't make certain common issues impossible, just a little harder. Just keep trying.  If you fail, get up, brush the dirt off and try again.  :)