Heartbreaking thoughts from Joe himself.

Joe just turned 9 and is growing up. Those growing pains that all kids get seem even more heartbreaking when it comes from an autistic child.
Joe recently wanted to go to his friend's house down the street to play with some kids. He is in typical class with one of the boys and the other boy is in his 'special' class for reading but doesn't have a "disability".
Joe was very excited about playing there since they invited him over. I rode my bike down there with him. They are very nice kids with nice families.
He played for an hour, two days in a row. After the second night, he was having trouble sleeping. I asked him what was wrong and he said, "Mom, there's something wrong with my brain."  HEARTBREAK! I tried hard not to cry. I took a deep breath and asked him what he meant. He said he couldn't think about that but that there was something wrong in there (pointing to his forehead). I asked if his head hurt and he said no. I  hugged him and told him that he was ok and put him to bed. I then was the one who couldn't sleep.

The next morning I asked him if anyone told him there was something wrong with his brain and he said "No-I just know there is."  Perhaps in playing with his new friends he realized that he is different. Still not sure. Later in the day I used Temple Grandin's approach with him.  I talked to him about his brain and told him that he was very smart. His brain may work differently than his friends, but he is very smart and sweet and kind and not 'less' than them. I also told him that I love him just the way he is!

The other recent heartache for me came on his sister's birthday. He watched her leave with her friends for dinner and said, "I hope I have friends someday."  I told him he did have friends, of course. It still breaks my heart. I wish I could spare him the hurt this world holds.
Life is hard but still harder for someone with autism, or any other diagnosis that makes them different.
Sigh,

Joe's Mom

Sensory Issues

I didn't realize that some of Joe's difficult moments were happening because of sensory issues.  If only the Temple Grandin movie was made before he started Kindergarten :) That movie is a must see. It really helps to understand the sensory problems autistic people/children face.
We moved just before Joe started Kindergarten to an even better district. They introduced us to an Occupational Therapist.  She really opened my eyes to problems Joe was having and how they were related to sensory problems. I had no idea. No wonder he acted out whenever we went to Walmart. It was too much for him.

I also had to carry him onto the bus every morning. I would get notes and phone calls from the bus driver about Joe not sitting down and not listening in the afternoon. Sometimes, Joe would refuse to get on the bus leaving school as well.
I came to understand that the bus was very loud for Joe. In the afternoon, it was also very hot. The Occupational Therapist explained that to most children, it may be a little warm or loud, but to Joe - it was magnified a great deal. He couldn't handle the bus ride so he was acting out.
The answer of course, was putting Joe on the school van instead of the bus.
I also learned about weighted blankets and the use of hats. When it's hot and sunny, a hat does wonders, as well as an umbrella. He also likes a soft blanket. At school, they let him wear a hat if he started having issues. This made  him feel safe and seemed to help him focus on the task at hand.
Joe didn't like leaving home so his teacher made a picture book for him. She put photos of me in there so when he got upset, he could look at my picture. She also put pictures of Joe doing each of his school tasks. This gave him a visual calendar of sorts and helped him transition.
All of these things helped me understand why Joe was having some issues and it also helped me get prepared for situations that I knew may be difficult for Joe to handle.
Kindergarten was hard for him but he made it though thanks to his great team.

Joe's mom

What I learned from Joe's preschool

Joe turned 5 in May, so he could go to kindergarten in the Fall. (Joe was enrolled in a preschool program at the elementary school that had half typical children and half special needs children.)  He would spend all day kindergarten in the special needs room with special needs kids. All of his IEP Team recommended this for Joe, since he was supposed to start Kindergarten in the Fall.
I asked his preschool teacher what she thought one day before school. She told me that it would break her heart to see Joe  in that room. She said that Joe was very bright and she was afraid that putting him in the room, with kids that were much worse than he was developmentally, would be detrimental to him.
HER WORDS HAUNTED ME….  I went against the IEP Team and decided to give him an extra year of preschool. The no dairy in his diet worked very well for him and he was making progress so an extra year of preschool wouldn't hurt. He was still behind kids his age anyway. This meant another year of half-day daycare and half-day preschool. Harder on me financially but better for my son.
I am forever grateful for that teacher's advice!
The next year, he had a new teacher. She had a different teaching style. She helped me understand that I needed to help Joe not be so rigid. He liked things a certain way and got upset when things were changed. Parents of autistic kids know how hard it is to deal with changes. This teacher was saying that we needed to get them out of their comfort zone. Let them have a fit about a toy or color but it is the only way they will learn to accept change. If she noticed that a child came in every morning and picked out the same toy to play with before class, then one day, that toy would be missing. This forced the child to try a new one. Her philosophy was that autistic kids are very rigid but won't be able to handle the real world if we cater to that trait. It was hard sometimes but it really was a big help over time in curbing the 'shut down mode' or break downs when things changed or were in a different order. As a parent, we all want to make things easy for our kids but I learned that having that mentality is really more harmful to children than helpful. I am not perfect about this but I have tried to remember this philosophy/advice.
Joe and I were very lucky to  have such wonderful preschool teachers that really knew how to help kids like Joe AND their parents!!

Joe's Mom

Joe and Dairy (2)

Being a "Mother Warrior" as Jenny McCarthy so aptly names us, really paid off.  After one week without dairy, Joe slowly improved.
I still had resistance from his dad who would give him yogurt and milkshakes on his weekends with Joe. Finally tho, there was a breakthrough!  My then 10 year old daughter told me what happened. Joe started throwing a tantrum at his dad's when his dad asked, "Is this what your mom is talking about?"  And bless her, she mouthed off as most girls do, "Dad! Mom's only been telling you this over and over. Joe can't have milk!"  He even saw the difference. FINALLY I had some cooperation. Yes!
In the summer, Joe had to go to daycare while I worked. I would get a note nearly everyday saying that Joe had a tantrum or he threw something or he tried to take his clothes off. It was upsetting and frustrating. Life was still very hard in my world. Joe was only a fraction of what was going on in my life at the time. My heart was heavy.
 As Fate would have it, I was running late one day and while I was putting Joe's stuff in his locker at daycare, they were giving him some cereal. MILK!!! I had told them he couldn't have dairy. When I asked the director, she said they had to have a doctor's note saying Joe was allergic. I had no such note. Joe isn't technically allergic to milk. So the next day, I brought in soy milk with Joe's name on it and told them he was to have it in his cereal and that I would bring more when it ran out. They obliged and it worked!  I never got another bad behavior note! Not that Joe was perfect - he still had issues but the severe temper tantrums stopped when dairy was no longer a part of his diet.  Proof again that dairy has negative effects on Joe.
This was just the first step in trying to help him on my own. Babysteps. That's what it was because I myself was just learning how strong I really could be.

Joe's mom

Joe's Diet Part 1

My previous background blog was a bit long (sorry) and I am new to this so please forgive the typos. 

When Joe was in preschool, he kept his head down for the first hour and really didn't respond well. If you read the previous blog, there is more detail there.

I was very much alone in trying to help him so I started reading and researching. I read a book that truly saved him. Jenny McCarthy's "Louder Than Words".  

I decided to apply one thing in that book to Joe, just to see. I stopped all of his milk and dairy. I figured this was the easiest place to start since the gluten part was more than I could handle at the time. 

I use the word 'easy' lightly because anyone who has an autistic child knows that there is nothing easy about changing things in an autistic child's world!! It was not easy. Joe loved his chocolate milk, and pudding and yogurt and ice cream and cheese. It is not easy to cut dairy out of any child's world but it was especially hard with Joe. At first he would open the fridge and scream. At the store, he would see the milk and point and throw a tantrum. It was awful.

The other kids were mad because I took away the ice cream and gogurts so Joe wouldn't see them. When he went to his dad's, I explained that I was trying this no dairy thing to help him. I got resistance there. "Kids need milk" etc.  I didn't care. I wanted to help my son and it was worth a try I thought.

After a week without milk, I was carrying Joe into school and I remember looking up at the sky and saying, "God, they say you don't give people more than they can handle but I can't take anymore".  I had tears in my eyes walking into that school.  The teacher met me at the door and asked if I got her note. I didn't. She had put it in the little pocket in his backpack.

The note said, 

"DEAR JOE'S FAMILY,

JOE WAS CAUGHT SMILING, SINGING, TALKING, AND PLAYING TODAY.

WOW!!!"

It was as if God heard me!! I hung that note up at work and it kept me going during one of the hardest times of my life. 

In just one week, the effects of having no dairy in his diet was like lifting a veil. The teacher said he wasn't putting his head down for the first hour anymore. He was sitting up and holding his pencil! His was more alert!  Truly, eliminating all dairy was the biggest help in Joe's life. I cannot stress it enough how important it is to try that with any autistic child. It may not work and it is hard (understatement) but it is worth it to see if it does make a difference. It did for Joe and many others I am sure.

More to come,

Joe's mom

About Joe

It's hard to start writing about Joe, or anything really, that is ongoing. It's like starting in the middle. How can I just jump in? I simply can't without some background info. I will try to be brief but...

Joe was diagnosed at age 4. It was a really tough time in my life. I simply had no support in questions I had about him. 

His father didn't want his son "labeled".  Some said, "Oh, that's just Joe being Joe." His pediatrician said he was just a "strong willed child". "But he's different than the first 3, I said". Still no help. I was confused and not sure. Maybe it was me making too much of it?

I really felt overwhelmed and alone. I had 3 other children to worry about and life was very complicated and truthfully, quite scary.

Without getting into too much, we went thru a horrible (understatement) divorce and I had to find help for Joe alone. It was such a dark time but I can't talk about how hard it is to find yourself single, with 4 children and basically penniless. It is another story and this is about Joe.

I tried to enroll Joe into the local headstart program. Since I was going thru the divorce and had no job, we qualified. Boy was it an eye opener! There was a screening process. Different stations to test hearing, vision etc. I knew right away that Joe was not like other 4 year olds. I cried. I knew then for sure what I  had suspected was true.

I applied for Joe to get into the school's preschool program for special needs kids. It consisted of half typical and half non typical kids. They put Joe at the top of the list to get in. Thank God.
So I took Joe to the specialist alone. He told me what I suspected. Joe has high functioning autism.The doctor set up a speech and hearing evaluation at a well known children's hospital.
It was a nightmare. I knew he could hear but understood that it is a process that one must go thru to get help.  It was horrible. He passed the hearing but the speech evaluation part was a nightmare. Joe hated to be in that room. He screamed, tried to bite, tried to climb the wall, spit on the wall, licked the wall, etc. It was 45 minutes of hell. The lady who was evaluating him said, "If you can get him into that preschool program, that's about the best you can do. We can't help him here. Our sessions are 30 minutes and it's been 45 and he still hasn't settled down. You'd be wasting your time driving all this way." (It was a 50 minute drive) I walked out of there angry, disillusioned, sad and determined. I decided then and there that it was up to me to help Joe. The doctors had no answers or help to give.
Luckily, (or maybe not luck. I think things happen for a reason) Joe got into that preschool program.  It was not easy taking him there every day before work. Always a battle to get him dressed. I had to practically sit on him to get him ready.
Looking back, I don't know how I did it. I had 3 other kids to get ready for school. I also had to make it to work on time. Some days I walked into that school in tears, carrying a kicking and screaming Joe.
He spent his time at the school with his head down on the table for the first hour. He would lift his head for music time and he sat in the way back for story time. He didn't play with other kids and wouldn't smile or anything. The teacher would tell me his typical day. If he got angry, he would try to take all of his clothes off. Boy was  he a fast undresser! It really was such a hard time. I worried about him constantly at work. I also had other kids to worry about. I was still going thru the horrible divorce and it was so hard on the kids to move and give up the life we had.
A little more background on Joe.
He started talking early and then stopped. I swear he would repeat my sentences at 11 months. He ignored most people. He did show me affection, but not many others.
He threw up constantly as a baby. I nursed him for about 2 months but he never latched on correctly and I was sore. I asked the doc about him throwing up and was told that as long as it wasn't projectile, that he was just colicky. No one wanted to hold him because of it. I was always covered with spit up. I always had a spit up towel over my shoulder.
Looking back, I should have explored it more but I was overwhelmed. One of Joe's brothers in only 14 months older. It was like having 2 babies. Plus the other kids, 7 and 5. Life was not simple.
As Joe grew, he was a big eater. Could never get enough food. Or milk. He loved milk.
He loved the water. He loved to swim. He had no fear of danger. He tried to get into the middle of the road many times.
When the kids would play on the swing set outside, Joe would wander to the edge of the field and sit there with his back facing us. (We had acres of land so it was a big field)
He could have been one of those toddlers you hear about that wanders 1 mile from home. He also was an escape artist. I had to have special eye-hook locks with safety sleeves. When he was 2 ½, he would take the broom and hit the eye-hook to open the door.
He was very smart. Didn't really talk much but smart! Maybe that is why most thought there wasn't anything wrong with Joe. (I mean nothing bad by the word 'wrong' but it fits)  Joe also didn't like to sleep.
When he was 3-4, he started looking up and talking (nothing we could understand) to 'ghosts' as the other kids would say. It was strange. He still does this sometimes at age 8. Some people call it 'scripting'.
Joe freaked out at places like Walmart. Now I know it was sensory issues but at the time, I had no idea. I thought he was just misbehaving. I had to strap him in the cart tight and hold him with one had just to shop. It was not fun. I hated taking him in public.
His temper tantrums lasted over an hour. Full fledged. He would knock over chairs when he got mad. He would scream. Sometimes I would scream back. :) Sometimes that fooled him and made him stop, but only briefly.
He would strip down and run. I had to be fast but he was usually faster. It was another way of him expressing anger.
Joe became echolalic. He repeated the last word he heard. If you would ask him, "Joe, do you like red or blue?" He would answer, "Blue".  "Do you like blue or red?" He would answer, "Red."  I used to ask him over and over, "What is your name?" He would answer, "Name".  I used to do this in the car with him to try to teach him his name.
Joe also liked doing things the same. He'd get mad if I drove down a different street to get home, for example.
There is more and I will include it in future blogs.
This is my first time really writing about Joe. I think it's time to tell his story and his successes!
More to come later,
Joe's Mom