By Shirley Blaier-Stein | April 12, 2013 at 06:37 PM EDT | 1 comment
He is no longer with us. Beautiful boy.
I would see him on the school bus every morning. With his big blue-green eyes looking at me. Those wise eyes. He was non-verbal but those eyes always seemed to talk. His eyes told me that he understands everything I say to him. That he was excited. That he was happy.
The kids at school loved him. They have been together with him for years. Surrounding him with love. Typical kids who saw him as one of them. They knew which songs he loved and made sure to sing them for him in class.
At the wake, I met so many people from school. I saw so many kids from his class. They were crying. Heartbroken. Devastated.
I broke down in tears before I even entered. When I got to see my friend we hugged in silence. The tears were coming down.
“You now, Shirley,” my friend told me quietly when we both caught our breath, “everyone here,” she pointed around at all the people surrounding the large room, “they don’t know what it’s like.”
I looked at her quietly. Not trusting my voice not to break.
“What’s it like to be a mom like you and me. I keep on thinking of the PPT I need to schedule. How I have to look into this new therapy to try with him.
“Ever since he was born I am thinking of how I can help him. Be there for him. How every breath I take would affect him.
“And now he is gone.”
I looked deep into her eyes and saw it. The constant worry. The endless love. The feeling of purpose. I know we are so much alike. Our lives revolve around them. We sleep, eat and live through them. Our special children. We are doing everything we can for them.
Special soul, I hope you have found peace.
And I am praying that your wonderful mother would find peace too. One day.
By Shirley Blaier-Stein | February 10, 2013 at 06:56 AM EST | No Comments
You are woken up at 7:30 am by rays of sunshine coming through the blinds brushing onto your face.
(Not by your kids and not in the middle of the night!)
The temperature is 75 and sunny. (After yesterday, need I say more?!)
Your children are sitting and having a fresh breakfast that your husband prepared. They are eating everything they are served! Even your autistic child.
When you come into the kitchen your husband hands you a cup of freshly brewed coffee. He tells you that he had already packed the kids’ lunches and snacks.
When it’s time to go to the school bus, your kids put on their shoes and backpacks by themselves.
Your husband walks the kids outside and returns with the mail. Instead of the regular bills, you find an envelope with a check for the car accident you were involved with. The insurance company of the driver who rear-ended you finally sent you a fat check.
Soon after that, and after he finished to clean the kitchen, your husband leaves for work.
When you check your email, you find three new freelance jobs from an agency you signed up with, that pay very well and are exactly what you feel like doing.
While you are in the middle of the first job you get a call from school. It’s your child’s special education teacher.
Your heart skips a bit as usual and your mind begins to go through all the possible scenarios: your child hurt himself again; he has been going through a hard time and you need to come pick him up; he is injured.
The teacher on the line asks you to come to school as fast as you can. She wants you to come and see for yourself the miracle that just happened. Your autistic non-verbal child just started speaking fluently.
“He is sitting in the typical classroom now with his peers. He simply started speaking at music class,” the special education teacher tells you.
You put your shoes on and run to your brand-new-and-perfectly-clean car. (Your hair is perfectly made and your makeup is intact on this perfect day even though you work from home.)
While you are driving to school you thank the universe for giving you exactly – absolutely exactly – what you wanted.
By Shirley Blaier-Stein | January 08, 2013 at 06:11 AM EST | 4 comments
Here is a piece written by a guest writer. I know this lady well and admire her. I hope you enjoy her writing as much as I did. Shirley
Here it is:
If you are parent of a child with autism it is no doubt that you have suffered greatly. For there is no greater pain than being powerless to help your child. A child that seems trapped in their own body. A child that has thoughts that they are unable to vocalize, express or control. A child that you would do anything for.
Sandy Hook. I shudder just writing those words. It is a tragedy that happened 20 miles away that I cannot wrap my head around. When it surfaced that two of these precious souls had autism, some in the community called it a double tragedy. Insult to injury.
That is when it happened, that fleeting thought, the one I dismissed as quickly as it came – because it was a horrible thing to entertain. I was a horrible person for thinking it. The idea that although this is a painful, visceral loss for these families, is there hidden in there some relief?
Relief that their child is no longer bogged down in the daily struggles of a world that seems to only work against them? Relief that they no longer need to think and plan for the future care of their child when they are no longer around or physically incapable? A possible second chance at a different kind of life for themselves and other family members?
Yes, I thought it. Yes, I entertained it. And I quickly dismissed it. I knew immediately that the daily struggles of living with autism could not compare to the unspeakable void and loss for those parents. Because although autism parents know great suffering, I have yet to meet one that also hasn’t experienced great joy.
We make the mistake of treating our emotions as if they can only exist in isolation – happy or sad, excited or scared. Instead we need to learn to allow the diverse spectrum of emotions that is as varied, complex and multi-faceted as our own children.
I am not a horrible person for having thoughts that exist in contrast to my heart. I am a mom, who on a daily basis feels a multitude of different emotions about my life and circumstances. A mom who desperately loves her children and appreciates their daily beauty.
By Shirley Blaier-Stein | December 20, 2012 at 05:28 AM EST | No Comments
Have you ever wondered how our little ones keep on trying?
They have such a hard time dealing with this world. It’s loud. It’s too busy. There is too much light. They are in pain a lot of the time. People around them don’t understand them. They see a label and don’t take the time to get to know the child within.
I often look at my son, especially during challenging times, and I don’t know how he does it. What keeps him going. What makes him want to learn more. What moves him to get closer to us, the “regular” people. What drives him to be a part of this world.
I had dinner with a good friend of mine a few weeks ago. It was during one of those challenging timed Dan was having. I asked her, “Why do you think he keeps trying? Where does he get the strength?”
My friend sat silent for a moment. She looked me straight in the eyes, and then she said to me, “you how I’ve been in a bombing?” (My friend was in a terrorist bombing in 1997. A deadly terrorist bombing in the heart of Tel Aviv.)
“Yes,” I said.
“I never told you the whole story, because it is so hard. Do you want to hear it?”
“Yes,” I said again and she begun.
“I was sitting with two girlfriends having coffee on that Friday afternoon. I was wearing a tiny t-shirt up to here,” she touched the top of her belly, “and a very cool pair of jeans. I was in my twenties, you know.
“At some point something happened and I found myself thrown in the air. It was like something comes at you from every direction and just lifts you up. I fell on the floor and could not hear anything. I looked up and realized that it happened, that there was a terrorist bombing. I didn’t feel my body but I knew that I had to get out of there, because often there is a second bombing directed at the people who would gather around to help.
“There was a twisted nail that hit a half an inch from my heart. I was bleeding. But I did not know or see any of that. I just knew I had to save myself.
“I found the strength to get up and I started running away from the scene to a crowded street. Everything seemed to be in slow motion. I remember the faces of people I passed. Their eyes torn open, their jaws dropped. Some of them screamed. After I saw a few of those I looked down at myself and saw that my clothes were drenched with blood. There was a hole this big on my side,” she held her fingers up in a two inch circle, “and blood was running out of there.”
“At some point a young man stopped me and said, ‘where do you think you’re going?’
“He hailed a cab and instructed the driver to take me quickly to the nearest hospital. The last thing I remember before I was knocked down was the doctor screaming “she’s not breathing!”
“I mumbled, ‘please don’t tell my mom,’ and I passed out. A week later I opened my eyes to see my mother’s face before me. I was so thirsty. I could not talk because I was still connected to the machines. My mother knew what I wanted and she placed a wet towel on my lips. When the doctor came he told me that it was a miracle that I survived. That if I hadn’t lifted my body right then and there from the ground I would never have made it alive. ‘How did you even do it?’ he asked me, ‘Your body was in such terrible shape.’
“It took me four months of all different kinds of medical and physical therapy until I could return to an almost normal lifestyle.
“None of my clothes fit for months because I looked like a skeleton. No, not in a good way,” she said after she saw my eyes widening, “they had to hide mirrors from me for months, so my heart won’t break seeing myself with all the scars and burns and wounds and hardly any flesh on my bones.
“The burns on my back,” she stopped for a minute to catch her breath, “were so bad. It took months for the skin to heal and then it was all pink for so long.
“But I did it. I went through it and did it. And now I have my son and happiness. And friends like you.”
I sat there looking into her eyes, bawling.
“Shirley, all of us have strengths that we are not aware of, until we need it. We are all survivors, fighters. When we are faced with a threat or a challenge, that’s the time that we find those strengths inside of us.
“That is the strength of our soul. We can do anything. Dan is fighting to be here. He is strong. And we are going to help him. OK?”
We will, dear friend. I’m so glad to have you with me.
By Shirley Blaier-Stein | December 04, 2012 at 05:22 AM EST | 3 comments
It was a cold Sunday and we went to the Whole Foods food court for lunch. Dan, Gali, Alex and me. We do that sometimes when I don’t cook or when we need to get some things from the store, or when we need to keep Dan out of the house so he could keep his shoes – and so his medication patch which is on his foot under the socks – on for a certain amount of hours.
The kids picked out what they wanted – Dan his usual rotisserie chicken and white rice which he would eat with ketchup, and Gali whatever she said she wanted which she would eat only two bites of – and we went to sit down.
Dan was starving so I frantically opened all the boxes as soon as we found a free table. Between ‘chicken cut’ here and ‘rice and ketchup’ there and some ‘water pour’ he managed to get himself relatively calm. But then as soon as I got a chance to finally open my box with my lunch, he announced, “bathroom!”
I looked at Alex, who was sitting at the other side of the table, next to Gali who’s been eating her soup nicely all that time. He was half way through his lunch already. When he saw the look on my face, he got up quickly. “Daddy bathroom,” he said to Dan, “come!”
Off they went and I was left with Gali.
After a moment, I managed to catch my breath and open my lunch. I took a sip of my soup and smiled at Gali, when I saw a woman passing by and looking at us. She looked at Gali, who was wearing a pink dress with striped tights, her hair was down and her long brown curls so pretty, and then at me, with my “mom uniform” which is my dark blue jeans and my long sleeve black shirt, hair pulled to one side so I could eat, and gave me such a big smile. ‘Awwww… said her face as she looked at us. ‘What a great mom you must be,’ her eyes said to me, watching me sitting with this polite beautiful child at the table, eating our lunch calmly, smiling at each other. I smiled back at her and enjoyed the moment.
Soon after I heard Dan’s voice. He and Alex came back to the table and the frantic cutting of chicken, serving rice and squeezing ketchup returned.
That woman’s smile made me think. When someone sees me with Dan cutting, serving, calming and raising my voice at him when I have to, they would never think to themselves ‘what a great mom.’ Such sight would never generate a smile on any face. More likely they would be thinking, why is this boy not eating by himself? Why is he so loud?
But you know what, people? Doing that is so much harder. It is so much harder to keep a kid like Dan at a public space doing anything. Usually the noise and commotion would overwhelm him so much that he would ask to leave, or worse, start to scream or escape.
Keeping a typical girl at a public space eating is easy! Typical girls usually do what you tell them. They are happy to be there with you. They don’t need you to squeeze their head, put deep pressure on their thighs, cut their food to little pieces, direct any and every move of theirs so they would stay where they need to. They are doing all of that naturally.
The time that I deserve the smile is when I’m with Dan. When he actually sits. When he eats and drinks what he is given. When he does not run up and down the food court squealing loudly.
Raising any child is a big job. Our kids? Just a tiny bit bigger!
By Shirley Blaier-Stein | November 08, 2012 at 01:57 PM EST | 10 comments
There is an old tale about an overburdened man who came to the rabbi to ask for his advice.
“Rabbi, I need you advice,” he begun, “I don’t know how much longer I can go on like this.”
“What’s wrong?” asked the rabbi, who knew that this man had a big family and everyone there were in good health.
“My house is so crowded. The boys are running around, the girls are helping with the babies, but the place is so crowded and I can’t find peace of mind. I’m tired from working so hard and now my home is simply impossible. And my wife is now pregnant again!”
“You must get a goat and bring it into your house,” said the rabbi.
“What?!” said the man, thinking he must have heard wrong.
“Yes, go get yourself a goat and bring it into your house for two weeks, and then come see me again.”
After two weeks the man comes to see the rabbi, his back bent over and black circles around his eyes.
“How is it going now?” asked the rabbi.
“It’s terrible. I thought my house was crowded before, but now it is impossible! The goat is chewing on everything, it makes the house stink. My wife has to work even harder so she doesn’t have patience for me. Why did you tell me to do that?”
“I understand,” said the rabbi thinking, “Why don’t you take the goat out now?”
A week later, on Saturday the rabbi saw the man walking proudly and happily with his family into service. His head was up and he was smiling.
“How is it going?” asked the rabbi.
“My life is just perfect now, that I got the goat out. My house is clean and there is so much space. My wife is happy again. Thank you rabbi for your good advice.”
Why did I tell you this story? Because in some way I used to be this man. I did not talk to anyone about it – I’m just telling you! – but life was not easy for me lately. Moving to our beautiful new house consumed a lot of my energy. Dan’s been having a hard time transitioning to his new school. Instead of going back to doing my work and my writing as soon as the kids started school in September, I found myself talking to the school and the doctors all day long trying to find a solution, to help Dan.
Dan’s time at home was also unbearable. This situation lasted for a while and took a toll on all of our family.
I thought I could not take it any longer. I thought that it couldn’t get worse.
And then came hurricane Sandy.
I sat for a scary day and night listening to the wind outside. I looked out our big beautiful windows at the many huge trees we have around our house in great proximity.
I listened to the screeching of the trees all night long and was scared that one of them would fall and that we would have to leave the house in the middle of the night.
We were in the dark and cold all that night, because power went out early that evening.
When the storm was over the next morning, I looked outside to see that all of our trees survived. I was relieved and happy. I waited for the power to come back on, so we could all celebrate.
It took nine days for the power to come back. Every evening I held the kids next to me in our big bed under the big covers to make them warm. Every morning I would sneak out to drive to the one store that had power to get coffee and doughnuts. We had breakfast in bed. It was too cold to get out.
Then I would dress the kids up and take them in the car. It didn’t matter where. We were so cold in the house that the warm car was already an upgrade.
We spent our days in restaurants and coffee shops, eating warm food and charging the computer and the phone, so the kids would watchDVDs later.
Some of the days we spent at friends’ houses, taking showers and getting warm.
Did I mention that Dan needs routine more than anything?
At some point I couldn’t take it anymore. Everyday more houses and more streets in our town got their power back. By that time, everyone around us had power besides us. I felt grateful for the UI crews for helping so many people, but why were we last? How long would it take?
When I thought I got to the end of the rope, we got our power back. There was no end to our delight.
“We’ve got power, we’ve got power” I danced with the kids.
I used to complain about many things, like cleaning the house and doing laundry.
I thought what we went through with Dan’s transition was the worst.
Sandy came to prove me wrong.
This experience also showed me that I am much stronger than I thought.
And you know what? Dan is too. Because this boy was such a trooper. He had a hard time but he know that we were all in a state of emergency and so he cooperated with me so much more than on regular times.
Not that I’m wishing myself or any of us any more horrifying experiences like this, but I’m glad I learned my lesson: that everything before the storm was actually fine, or at least not as bad as I thought it was.
Here I am now so thankful to go back to the way things have been before. I’m happy to be doing all those things I used to complain about, even laundry!
Thank you my dear friends who hosted my family and made us feel warm as well as warm in our hearts. Like my dad wisely said, “it’s better to have no power and have good friends, than to have power and have no friends.”
Stay warm and please tell me about your own experiences!
By Shirley Blaier-Stein | October 01, 2012 at 03:40 PM EDT | 8 comments
I had dinner with a bunch of friends last night, celebrating the birthday of one of them. I was exhausted from the week and a long busy day with the kids, yet as soon as I got into my car and started driving the fatigue disappeared and I was filled with anticipation and joy.
We had wonderful food and great conversation and I was convinced yet again that the research that said that a woman’s health improves the more she spends time with her female friends, is so true.
During the dinner, my friend Stacey told us that 3 am is a very spiritual time in the universe. If you are up at that time there must be a good reason. “If that happens, you shouldn’t fight it. Don’t get upset. Stay up for a while and enjoy it. Try to meditate and even write and you’ll see how this will make you feel better,” she said.
I got home late and went to bed at midnight, only to be woken up 3 hours later by Dan. If you are an autism mom, you surely have been in this situation when our kids wake up and decide that 2 or 3 am is morning!
It was 3 am. Exactly the time Stacey told us about.
I gave Dan his iPad and went back to bed to try and get some more sleep. Dan was quiet for ten minutes, but then he asked me to come to his bed. To make a long night short, I stayed up until Alex woke up around six and then I got an hour of sleep before the day really started. But I remembered what Stacey said and so while I was up, I did not get upset about it. I tried not to fight it.
When I joined Alex and the kids after the hour of sweet sleep in the morning, and after a few sips of coffee, I got to thinking. I pondered why Dan was doing it, waking up so early. Was it something in his nervous system that is wired differently from ours that makes him do that? Is something bothering him? Does he have allergies?
And then I remembered that I used to do the same thing as a kid. I used to get up and play in my room. When it first happened I went to my parents’ bed and woke them up, but then my mom taught me how I should stay in my room, close the door and play quietly.
Then I remembered how Dan’s little sister also used to wake up really early when she was younger. I would not make her go back to her crib because I did not want her to cry and wake up Dan, who is so sensitive to sounds, and so I would let her stay up and play.
Just when I was going to blame autism for Dan’s early awakenings I realized that it might have nothing to do with that.
Perhaps I could stop blaming autism for everything?
This must have been my 3 am spiritual time message.
By Shirley Blaier-Stein | August 21, 2012 at 06:42 PM EDT | 3 comments
Do you daydream? Do you sometimes let your mind wander and picture your secret wishes come true? I do. A lot.
I often dream about what Dan will tell a reporter when he will be interviewed in the paper or on TV. You know, when he grows up and does something really important, like….
When he is the captain of a bowling team and they win the world championship: “Since I was very little my mom took me to play bowling. She knew that the noise bothers my ears, but she told me that I will get used to it.
At first, I would just watch the balls go, but then I tried to roll the ball myself. She kept telling me, “strong in the middle!” and that’s what I did. Now that’s what I tell the team, before every game.”
When he wins first place on Dancing with the Stars: “My mom was always searching for ways to connect with me. She thought that dancing could be something we enjoy doing together, so she started organizing zumba parties for me and my friends. I kind of liked it and I learned to follow the teachers’ moves. Very cool dance, I tell you. I guess this is when I realized I could do this. I could really dance.”
When he graduates from Medical School and gives the graduation speech: “Since I was very young my mom followed the doctor’s advice and made sure to feed me protein and vegetables. He told her it was good for my brain and that eating well will help me overcome my challenges. I used to crave sweets and ice cream, yet she made sure to watch my diet and keep me healthy. I’m going to do the same thing for my patients.”
And last, when he receives a Noble Prize in medicine (hopefully for finding the true cause of autism and a cure): “Mom, this is for you!”
By Shirley Blaier-Stein | August 10, 2012 at 11:33 AM EDT | 1 comment
After we moved to the new house and finished unpacking and organizing everything, it was time to go outside and look at the backyard.
Our house is situated among such beautiful trees. You step out onto the deck and find yourself in a magical spot. There’s the big oak tree and a group of trees circling it. They look like they are guarding our house. You hear the birds chirping and the crickets.
There is also some grass and space for planting. That was the last step in my multiple-phase plan of moving to the new house.
My stepdaughter and I went to the garden center to get plants and seeds. I knew that Shira would be the best person for this job. She has this calm personality and she loves to help.
When we came home, we dug holes and planted the rose bushes, my favorite. We placed blossoming plants in pots on the two sides of the door. And then it was time for the seeds. I really wanted sweet peas and she picked sunflowers. We planted those in the ground and watered everything. We also made a really nice pot of lavender and some herbs for cooking, which we placed on the deck, near the kitchen.
We had some rainy days so we didn’t really have to water anything for a while. And then it became hot again and I went outside with the hose to water the roses and the seeds. And you’ll never guess what happened. After less than a week our seeds sprouted!
I was not even sure it was going to happen this summer. The guy at the garden center said ‘maybe.’
I looked at those green happy sprouts and it got me thinking.
For the past 5 years, since I learned about Dan’s autism, I have been planting seeds. Every day. Seeds of hope. I watered them with my tears and I prayed that they would sprout. I never knew if or when this will happen. The best answer I got from most doctors was ‘maybe.’
Yet I pushed and I pulled and I tried and I learned what works. Every day. And you know what, those seeds of hope sprouted and I now know that they will grow and blossom.
By Shirley Blaier-Stein | July 15, 2012 at 06:01 PM EDT | 4 comments
I stood there with my eyes closed, listening to the raindrops falling on the leaves. The trees in our front yard created a green canopy above us yet we could still feel some raindrops falling on our heads. I could smell the freshness of nature around me. I felt the warm sun coming through the branches. Yes, this was a funny show nature came up with for us today, rain and sun at the same time.
Just ten minutes earlier I was watching something on my computer in our new AC cooled living room when Dan came to me and insisted we go outside and blow bubbles. I tried to tell him it is raining and it is not a good idea but he insisted. Sometimes it is hard to change the mind of a person with autism.
After ten minutes of asking and one heart-melting smile I gave in and we both put our sandals on and went outside.
When we went out everything was wet so I couldn’t sit. I stood and blew bubbles, watching Dan pop them with his hands and sometimes waiting for them to peacefully get to the wet ground before he stepped on them.
Everything around us was quiet besides the raindrops falling on the trees. It was nature at its best. Majestic.
It made me think that this is what Dan does to me.
He makes me do things I would not otherwise do. See things I would not otherwise see. Listen. Understand.
I would never have gone outside during the storm if it wasn’t for him. I would’ve stayed inside and miss out on all of this beauty.
I would never have written the book about love and acceptance if it wasn’t for him. I would probably still practice law somewhere.
I would never have opened myself to different experiences and so many wonderful people as I have, if it wasn’t for him.
By Shirley Blaier-Stein | July 03, 2012 at 08:09 PM EDT | 2 comments
It was one of those days.
We recently moved to our new house so the past few weeks have been all about packing, carrying, organizing cleaning and unpacking.
Oh, and Dan was off of school and about to begin his new school in our new town.
In other words, I am so exhausted.
But then the summer school started, and knock on wood it is going well. And I had a few hours by myself. To do errands, but at least with nobody else to take care of.
And then Dan and I went to pick up Gali from daycare. I finally figured out the traffic and which way it is better to take on this 40 minutes drive. We got to the daycare on time for Dan to play in the sandbox and then I decided to take them both for ice cream. We do this sometimes on days that Alex works late.
We went to our usual place and Dan picked his usual coffee ice cream from the freezer, and then it was time for Gali to pick her flavor from the ice cream stand. The place was really busy so I held Dan’s ice cream container in my hand, but then suddenly I dropped it and it fell straight into the garbage bin. Clumsy mommy!
It was actually no big deal because that garbage bin was next to the coffee stand so it had only coffee cups and used bags of sugar. I was about to quickly pull it out but then Dan collapsed to the floor screaming. His precious ice cream! What have I done!
And then he made such a scene, screaming and holding his head with his fists.
I stood there in the middle of the store with people passing around us. Gali was so shocked that she could not pick a flavor. I didn’t blame her. All I wanted was to get out of there! Now!
But then I remembered that I once heard someone say that in life 20% is what happens to you and 80% is what you choose to do about it.
I leaned down and said, “Dan Stein, quiet now or no ice cream.”
He ignored me at first but then after the fourth time and once I showed him that his ice cream container is in my hand and still clean and ready to eat, he got up and smiled.
Of course there was a huge line to the register. But I decided that this was the perfect opportunity to teach another lesson, about waiting.
“You see all those people, Dan? They are waiting too. Let’s stand right here until it is our turn. Then we pay and go outside to sit on the chair and eat ice cream.”
Dan must have heard about the 20% and 80% rule too, because he waited very patiently.
By Shirley Blaier-Stein | June 21, 2012 at 06:48 PM EDT | 3 comments
We’re moving to our new house. Tomorrow. Yes, at 8 am there will be a truck parked right outside our house. Two guys will come in and take our things to our new house. The first one Alex and I own together.
We are so excited.
Of course I planned the move carefully. I made sure I had a week between the closing and our actual move-in day. I wanted to do it right. Each kid chose the color of his/her room. Alex and I went to get the extra furniture we needed ahead of time.
I planned to have it all ready for when the kids walk in, just like in those House and Garden TV shows: their rooms perfectly organized with the toys and books. The curtains moving slightly in the breeze will be a perfect match the walls, the bed covers and the rugs. All the clothes will be organized in the closets.
But then I got a surprise, when I found out that school for Dan ended on Tuesday! I thought it was supposed to end on Friday, and I planned on bringing in a cake and gifts and say a proper goodbye. But then I got a call, on my way home from the PPT in our new town, that Dan has just been brought back to school on the bus, because we were not home.
I rushed to school to get my boy and from that moment on, he joined Alex and me on all the errands. What can I say, even though he was so good, we didn’t get everything we wanted done.
So I had to separate from my perfect plan. The rooms are clean and the walls are painted beautifully thanks to my dear friend Janie. There are also some toys ready. But there are no curtains. The clothes will have to be organized later. Most of the toys are still in the lower level, waiting to be unpacked.
Luckily, the only one who really cares about the change of plan is I. The kids will probably be fine.
Think of it, this surprise of early dismissal from school reminds me of something. It reminds me of how years ago, I had a perfect plan on how my life would be.
And then when my boy was 3 it was official that my life will never be what I thought it would be. Autism took over our family’s life.
At first I was shocked, then angry, and then sad.
But when I accepted it and started to move through life in this alternative path, I realized that there is beauty here that cannot be found in any other place.
By Shirley Blaier-Stein | May 11, 2012 at 06:24 AM EDT | 4 comments
“God,” I said one morning last week, when nothing seemed to be going the way I wanted, “I usually spend my mornings thanking you for all the wonderful things you have given me, but today I can’t help but ask you: Why? Why me? Why do I have to face all this difficulty? Why can’t I get anything I want? Why is my life so hard?”
“Hard?” said God, “why what do you mean?”
“I mean why does it take me so long to get my book published? It’s such a good book and you know it. It should have been out there by now, hopefully a best-seller.”
"Oh did you finally send it out to publishers?!"
"Well, I'm talking to this agent and she mentioned it to some people..."
"You remind me of this guy," God said, "who keeps praying to me 'I wish to win the lottery please God,' but he never buys a ticket! How can I get your book out if people don't have your manuscript?"
"Once I send it out you'll make it big right?"
“My dear, everyone on your planet wants this: to be big. If I created every creature and plant big, you wouldn’t have flowers and grass. You would only have tall trees coming out of the ground. And there would only be elephants walking around. No birds and butterflies.”
"But there are some elephants out there. Please make my book an elephant! How soon can that happen?"
"What’s the rush?" God said, "You all want everything now. You can’t wait for anything. I’m very puzzled by this. You all know on a deeper level that time doesn’t matter. Before you come into this planet, I show you that. How everything actually exists at the same time, and “time” as you treat it is only an invention to organize your lives and nothing more. Yet you all forget this the moment you leave me and go there, and you get confused. Remember that everything you want you have already been granted. Just let things come to you on their own time.”
“God,” I asked after a pause, why does my boy still have autism? Why does he not talk yet? I‘ve done so much. I work so hard on getting him the right program at school. I get him the best therapy. I go through hoops to find the best doctors and the best treatments. I’ve done it all, yet he still has such a long way to go. Why, God?”
“Did you just hear yourself?” he asked me, “He still has a long way to go. I’ve been watching you do all those things, be sure I have. And I really applaud you. You are pretty amazing. I don’t know if I could do such a great job, really. But you are forgetting that this is only partly your journey and mostly his. You can’t ask me to do that: get involved with his progress, for you. It is a course that he chose before he came here. It’s not yours to touch. And you know,” he continued, “I’m still cracking up when I hear this word: ‘autism.’ What do those doctors even mean? They created this name and they treat it as if those beautiful children have an illness when all they really have is a gift of being open to higher levels of understanding. Do you know why there’s so many “cases of autism,” like you call it? Why the numbers keep growing? It’s because the people on your planet are evolving towards a better understanding of the universe. You are starting to be open to the greater wisdom, as opposed to being busy with a need to physically survive and fighting over pieces of land. The people are starting to understand that your planet is not the only one and that you are a part of something much greater. The children who take upon themselves the mission of teaching come here with “an illness” and by that they are awakening their environment. You better start seeing your son as a leader, instead of sick. Then you would not ask when his “sickness” would disappear. You will appreciate his knowledge and the task he took upon himself.”
“There is a big difference for me between having him labeled as “autistic” which I don’t mind that much anymore, and having to watch him suffer. You know how many times he is in pain and I can’t help him?
Why do I of all people have to sit there and watch my son suffer? I met my neighbor yesterday and she has five children and they are all healthy and normal. She just travels this earth in peace raising them! When they are at school she goes to community meetings and has coffee with friends. She entertains all the time. Why not me?!”
“Now you are bringing back history again. Remember when you were about to come to this planet and we were browsing possible paths for you? I told you that I cannot guaranty what exactly you will get but you can make a few wishes about the life you are about to experience. Remember what you told me? You said: just not boring. Whatever you do, I do not want a boring life. And here you are. Are you really honestly telling me you would want to have your neighbor’s life instead of yours? Would you be able to raise five children and not have your own career, goals, … life?!”
I thought for a minute and then said quietly: “You know my answer to that. No. I prefer this. But why can’t my goals and career happen already? I am working so hard. I spent so much time writing this book and revising it and then revising it again. Why can’t my voice be heard? Why can’t I get it published? Why can’t I go on TV or something to promote it? Why, God?”
“If all of your people were on the stage, who would be there to watch?”
“But it makes me sad to work so hard and wait so long. It’s like a rain that never ends and I am forced to sit inside and never come out.”
“Rain is not bad,” said God, “I created it in order to water the flowers and trees. Have you noticed how bright and lively they look after the rain? It is a good thing to rest and nourish oneself. Afterwards, things actually grow better and higher.”
“But why not grow faster?”
“That again?” God laughed, “If I would remove the dirt and pull those seeds that I have just planted, to make them grow faster, I would destroy them. I need to water them with rain and wait. So do you.”
“How about some perspective?” he added, “You have a roof over your head. You are never hungry, unless you go on one of those stupid diets of yours because you don’t trust that I made you beautiful enough. More than half the population on your planet don’t have a roof and food whenever they want.”
“I get it,” I said slowly, “I really do. You taught me so much today.”
“Look, I got to go,” he said, “but I promise: your things are coming.”
By Shirley Blaier-Stein | April 13, 2012 at 02:36 PM EDT | No Comments
If you’re an autism mom or dad, you must know what ABA stands for, right? Applied Behavior Analysis. I’m no expert but I think you can sum it up by explaining that it is based on reinforcement. The child does something well, they get positive attention or a prize; they did something wrong, they don’t get attention and absolutely no prize.
I think it’s kind of like the carrot and the stick of the old days.
Now moms, I don’t know how many of you have faced this problem I have: my husband does not follow directions. Sometimes he ignores the most simple requests. And he often does not take the extra step to create his own thinking process and apply it to problem solving, when it comes to things around the house.
Which made me think: I need an ABA system for the home.
Here’s how it’s going to work:
If he went to the grocery store and got exactly what I wanted, he should probably get a good cooked meal, right?
If he played nicely with the kids giving me some peace to write, he should get some quiet alone time as well.
If he helped clean up the house, did the laundry, cooked dinner, gave the kids their bath and put them to bed… Now that it’s late and the house is quiet… what do you think the reinforcer should be…? Any ideas?
By Shirley Blaier-Stein | April 12, 2012 at 03:39 PM EDT | No Comments
You know how they say that pets look like their owners and vice versa? And how their personalities are so much alike and the pets’ mood can change according to their owner?
I have a similar relationship – with a plant!
It’s a Spathiphyllum, aka Peace Lily. I got it from my mom in the summer of 2009 and placed it in the kitchen on a glass shelf. It is right next to the sink and I thought this is the only way I will actually remember to water it.
When I first got it, it had a beautiful white flower. The flower lasted a few weeks and then it was just green. I watered it as often as I remembered. The plant slowly became a “mirror” for me, reflecting how I am feeling.
When I am super busy and stressed out I forget to water it. It becomes dry and the leaves get brown on the edges. They bend down sadly. As if they know they have been forgotten.
At one point I thought it was the end: My plant was so dry I thought it would never come alive again. But then it bounced back. Just like I do.
On the summer of 2011 I was up for the biggest surprise: A flower. A white beautiful Peace Lily grew in my kitchen. You see, despite the hardship and the long times without water or nourishment the plant not only survived, but also grew a flower!
Which made me think: As an autism mom, I go through such long periods of stress and hard work and I survive. It’s good to know that one day I’ll be able to bloom. Big time! All I need is nourishment.
By Shirley Blaier-Stein | April 12, 2012 at 03:36 PM EDT | No Comments
I had an interesting conversation with Dan’s BCBA this week. I came to see her for solutions to Dan’s behaviors at home. Some of the behaviors became too much to take. Besides the running around and demanding tickles all day, which is something Alex and I can still deal with, improving our cardio vascular ability every day, Dan’s behaviors towards his little sister are hard to take. He really wants to play with her, yet he does not know how, and so he grabs her favorite blanket just to hear her scream. Anything for attention!
So I came to see the BCBA to create a home training or program that will help us - and Dan - with that.
We talked for a while and I loved hearing her ideas and strategies and then she told me this nice story, about how she used to work at a home with adults who have autism. They could make their own food and they had a van that took them to work every day – yes, they had jobs! – and they could talk to their families on the phone and send emails.
When she worked there, it made her understand the importance of the things they teach our children at school at an early age.
“I finally figured out why they keep on teaching kids how to sort! You know how they make them sort the blue tokens from the red, or the square shape from the circle? It’s because later they can work at filing papers with different labels and sort cans at the store. These are valuable useful skills they can use forever!”
Who knows where our kids will end up, but it is good to know that someone puts thought to the things they are learning. One day it will all make sense!
As I listen to my patients request for a simpler life I strive to take that frame of mind and integrate an approach to medicine to make my life and my patient’s lives as simple as can be, by focusing on solutions, and opportunities for wellness. With this, my intention is to provide some simple concepts so you can make an informed decision to do your best with the diet. I will strive to stay away from technical jargon so the core concepts are easily understood.
I thought it would be an easy task, when I was asked to write this article regarding one’s diet, especially since my household is gluten and soy-free. In all honesty, any change in one’s life is difficult, but when one sees what change can do, then change becomes that much easier. I have seen the awakening of so many children when a change in diet is introduced that I am awestruck in the difference. I see a difference in the child’s awareness, eye contact, and bowel health and the new energy the household gets with such great results.
Frequently asked questions (FAQ’s):
How long does one need to be on the diet to see results?
Generally, the diet is done for three months. This is to ensure complete removal of the casein, gluten and soy from the body. For some children, they can be sensitive to smallest amounts of the gluten, casein, or soy.
Hey Doc, why are you making my child avoid all the food on the planet?
Well, for some, there is an enzyme called DPPIV peptidase that is missing due to an intestinal health/genetic issue This enzyme helps breakdown the gluten, casein, and soy. The gluten, casein, and soy may lead to partially digested proteins which then fool the body. The result is poor digestion, and the body mistakes the partially digested proteins for an opiate, which, if enters the bloodstream can cause serious neurological problems.
What is an opiate and what does it have to do with Autism?
Opiods are substances that can cause behavior changes in children. One example is the drug Morphine, which is derived from opium. Opiods are proteins that attach to receptors in the brains and guts and cause behavioral changes, as well as, digestive complaints such as diarrhea, constipation, and bloating.
What is Leaky gut and how does it harm my child?
“Leaky gut” is common in (75-90%) autism and implies that the intestines are more permeable than the normal. This can play a major role in food sensitivities and in soy, gluten, and casein sensitivity. Soy, gluten, and casein can enter the circulation through this leaky gut and travel to the brain. Thus, by implementing the GFCFSF diet, these proteins will not be absorbed and are unable to cause harm. It has been noted that in many cases that constipation, diarrhea, and self-injurious behavior and “dazed” sensations have improved simply by adhering to the GFCFSF diet. This is true because the opiods from the gluten, casein, and soy do not enter the blood stream thus avoiding exposure to the brain.
Use the acronym B.R.O.W.S. as a reminder of the foods one must avoid to stay gluten free. Remember not to confuse food products that list “wheat” free as being the same as “gluten” free. Wheat is only one source of gluten.
•B - Barley
•R - Rye
•O - Oats
•W - Wheat
•S – Spelt
Step 4: Work with a Doctor’s Supervision
“Special Diets for Special Kids” by: Lisa Lewis
Brian J. Henninger practices Naturopathic Medicine in Fairfield, CT. He practices family medicine using nutrition, homeopathy, craniosacral therapy, and H.B.O.T.
By Shirley Blaier-Stein | January 22, 2012 at 08:57 AM EST | 4 comments
During the Spring of 2006, I did my testimonial at Ladies Bible Study group in front of over 100 women. The first thing that I told them was that I am an Autism Mom. I did not set out to become an Autism Mom. Yes, I thought I'd choose what my 'mom title' would be and it would surely be something exciting! Let's see, the possibilities were endless....Soccer Mom, Stage Mom, Stay-at-Home Mom, Cheerleader Mom, Football Mom, Working Mom, The Fun Mom. Sure, I can still be all of those things, but Autism Mom is the title that I have identified myself with for as long as my son has had the diagnosis. I ate, breathed, researched and did everything Autism. From the day of that diagnosis I was an Autism Mom. I so desperately looked for answers from 'Autism Doctors'. Sometimes I'd get them, but I soon realized that the other Autism Moms who were a few steps ahead of me had some answers. I'd look for other Autism Moms everywhere. Sometimes they were easy to find. There were the moms with Autism magnets on their car, in the school pick up line or in the waiting room at the therapy of the day. Other times they were hard to find and it was a pretty lonely road. These days, I am also the Football Mom, the Jewelry Business Mom, the Christian Mom and I'd like to think of myself as the Fun Mom (not sure what my boys vote on that would be!), but Autism Mom always seems to lead the pack.
By Shirley Blaier-Stein | January 13, 2012 at 10:47 AM EST | 6 comments
Diets, supplements, prescription drug cures, droppers of unknown substances you name it I tried it. I am a mother of two autistic children and because of that my world revolves around helping my children heal, physically, mentally and emotionally.After years of being on “THE DIET” which for those who are not familiar with it is the gluten/casein free diet.Often this diet also includes foods which children “react” to which can include soy, nuts etc.After four years following strict protocol with no infractions I decided to stop it entirely and really see what would happen happened.Please keep in mind that I know many people have had success with alternative treatments and I am not trying to discount this but there are in my opinion many types of autism caused and helped by many different methods.I though, in my mother’s intuitive gut sensed that each time I would get excited “See it’s the …fill in blank...that is making her/him talk more!!” the low would come when they returned to their same state or sadly they became worse from the trauma of the new vitamin or lack of their favorite food.
Fast forward 3 years…me now divorced and the children thriving in a special needs school which seemed to have fixed a ton of their issues. I decided to test out “THE DIET”.My son is a great reader and had wanted to try Kit Kat’s on Halloween.I reluctantly gave him one...”Yummy chocolate Kit Kat” he looked me in the eye and stated.Hey, I thought, maybe I’m on to something here!Then my daughter “I want some Kit Kats for Halloween please”…suddenly Kit Kats became the favored snack for my children in the afternoon.This is crazy but I swear my son started talking in sentences!!Who knew after all these years of diets and supplements that a damn KIT KAT would make my children TALK!They did talk before of course but suddenly there seemed to be some kind of awakening.
Now...fast forward a few months.First came the Kit Kats…then came the Happy Meals…then…brace yourself SUGARY BREAKFAST CEREALS AND OREOS!!!Yes there I said it!They love them!Now when we go to the store they can count out 3 boxes of this…two boxes of that.Could it be that sugar, gluten and casein have caused their brains to calculate better???My God I have to share this I thought!All these years of following a strict diet and being a “good mother” and trying to do everything for my children I could to get them better…I could relax …just a little. J
By Shirley Blaier-Stein | November 22, 2011 at 12:13 PM EST | 2 comments
One mom contacted me recently and told me that her child was recently diagnosed and how in addition to being completely devastated, the hardest piece for her is her family's reaction.
We've all been there, right? We are in this horrible period of evaluations and an even worse time of waiting to get the results. We are so scared because we do not really know exactly what autism is and we are so scared of it. It already feels like life will never be the same again.
And then come those people - our parents, uncles, grandparents, even siblings - who have their own take on things.
In my family there was my parents who tried to convince me that the doctors are simply wrong. My family lives very far from us and they used to see us only once in a few months. And so they would offer their opinion based in looking at Dan's baby pictures. 'He is looking straight into the camera, his eye contact is perfect!' was something they repeatedly said. Other members of my family agreed: I was making a big deal out of nothing.
A few years later, denial continued. When we tried to take a family photo Dan was squirming in my arms trying to get away. At some point I managed to hold him in my arms long enough to hear from my uncle, who was taking the picture, that 'Dan is not looking into the camera on purpose!'
Yes, I was still making all this up and Dan was not talking nor playing and behaving appropriately on purpose!
Now things are different of course. Everyone in my family knows how big autism is. How hard it is to tackle the issues related to it. And how hard life is with it.
But wouldn't it have been nice if everyone would just give us a break?
I have this dream that family members of autism mothers would call them to offer support on a regular basis. Without asking how many words the child is already saying, without asking how school is going. Just call and say 'we love you, we know this is hard. how can we help?" And try harder to understand.
Love you, my autism mother friends, who always understand me.
By Shirley Blaier-Stein | June 23, 2011 at 03:40 PM EDT | 3 comments
The school year is over. Can you believe it? It went by so fast! Yet when I looked at the pictures of Dan from the beginning of the year I could tell he grew so much!
At the End of the Year Celebration Alex and I came to the classroom with treats to have one last chat with the teachers and the other parents. We wanted to thank the teacher and the staff for all their hard work. These people who work with our kids really pour their heart and soul into their work. It is good to remind them that we know and appreciate it.
After we each got a plate and while Dan was walking back and forth to the dessert table, I had a chance to talk to one of the class aids. I never got to do that - it was always the teacher or the psychologist. I causally asked her about her plans for the summer and she told me she herself has a child with special needs. She will be sending the summer helping transitioning him to a different school.
Her son's condition is different and may seem more simple than the kids in Dan's class. Yet she asked me - "how come I can make these kids talk, but not him?!" She was referring to the successes they have had with the kids at Dan's class during the year. With her own son she felt like a failure.
We were suddenly two mothers talking and not a mother and a staff member. While I was trying to comfort and encourage her about how it will all turn out - and while I reminded her that our kids will do things for others that they do not do for us! - I realized how much we have in common with the people who are caring for our kids. How much beyond the wish that our kids will do well. We want our kids to be treated and taught by the best professionals. In Dan's case our wish has been granted for a while now. This was a reminder of how much more we have in common with them.
We are all parents. We are all people. And it is nice to go beyone the barriers and it is nice to forget our 'parts' and jobs in this, and just be the real people we are.
When I was talking to her I could almost hear Dan thinking - that's it, mom, stop talking about me and how I am doing and just BE for a while.
By Shirley Blaier-Stein | May 19, 2011 at 11:23 AM EDT | 5 comments
Remember the beautiful story about how when you are expecting a baby it is like planning a trip to Italy and when you have a child with ausitm it is like you end up in Holland?
So I live in "Holland." Even though I get to speak some "Italian" with my typical girl, my life still happens in Holland. I know everything there is to know about special education; special diets; treatments for autism. You name it.
But this week I visited a friend in New York and spent some time just by myself with her family. It was like a trip to "Italy."
She is a very good friend and had always been a model mom to me. She is rasing 4 kids in New York City and enjoys every minute of it. When I used to live there I was stressed out a lot. (Maybe because I did not know yet what was different about my child. It was only after we left there that we got the diagnosis.)
But back to Italy.
In Italy nobody wakes up at 3 am for the day. You actually need to wake the kids up for school.
In Italy the kids get themselves ready for school. You don't even need to tell them. They get dresed by themselves.
In Italy you can make the same lunch for all 4 kids. There are no special diets or special requests.
In Italy the kids walk to school by themselves at ages 9 and 7. The younger ones go with you and listen to you and follow directions at all time.
It is so much easier in Italy!!
But yet I missed Holland.
And when I came back home I got the biggest hug from Dan. No words. Just hug.
And I knew that I would not ever want to switch.
Thank you my friend for the most wonderful 24 hours of culture and fun.
By Shirley Blaier-Stein | May 07, 2011 at 05:44 PM EDT | 4 comments
Last month the Milford Mirror published a letter from the mother of a 21 year old girl with autism telling how a zumba studio in CT banned her girl from participating in classes. Can you believe this? The reason was safety. But when the mother assured them that she will provide the young woman with an aid, they said that they are afraid that their clients will not feel comfortable having a person with disabilities in the class.
Get it? They were afraid to lose business because they have a girl with autism in the class.
Now the girl has already participated in the demo class with much success and was so excited about starting to do zumba that she purchased special zumba pants (I love those!). She was completely devastated. And her family too.
A week after that, it was published that a few studios in the area have contacted the family to offer their studios for her to join. Mary Rose from Studio Z Fitness, where we had our parties, spoke to the girl personally and offered her a spot. “She was so sweet on the phone with me,” Mary Rose told me, “I really hope she comes to dance here!”
Mary Rose also interviewed with the paper for an additional article and told them about our party and how our kids did great and had a blast.
I am so glad that while we are having a great time dancing and enjoying each other’s company - and the kids are enjoying themselves dancing and running around with their friends - we are creating awareness: We are showing that our kids can do this! They can participate in different activities that people would not normally think they can – and have fun!
Awareness is not just letting the world know how many kids have autism and what signs to look for. Awareness is telling how great our kids are and what wonderful things they can do.
By Shirley Blaier-Stein | March 12, 2011 at 02:17 PM EST | 5 comments
GPS for Autism Treatment
Being an autism parent means lots of things. Like planning ahead. I mean really. Everything. You never know what will work and what not so you have to be ready for everything. My friend Rena says you have to be like a chess player – plan three moves ahead. My friend Gretchen says you have to be like a colonel in a battle field, because you never know where the next grenade will come from.
The biggest thing for me with autism is figuring out the healing journey of treatments and therapies. There are so many things out there: From the mainstream speech and occupational therapy to horses, music and the million alternative therapies. There are so many different diets and supplements.
Many times we started something and it looked like it was working very well. But then it stopped. And then sometimes things get worse!
I wish there was a GPS for therapy. Something that would help me figure out in real time whether something is working and what to expect soon. Like if whatever we are doing right now is working the device will say “keep straight!” And if it is working but we have to change something soon it will say “in 800 yards, turn right!” If something is about to completely fail or get worse my GPS will say “turn around when possible!”
And once we have done everything possible known to man and it actually all worked, the device will say what all of us autism parents long to hear: “You Have Reached Your Destination!”