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Part Five of a Five-Post Series about one woman’s experiences with her son who has autism.

For the past four days I’ve shared my stories and tips for helping your child with autism start a path to recovery. Now cut back to our little family 10 months after the initial diagnosis. I still don’t have all the answers nor do I claim to know all the facets of this disease since it seems to just get bigger every day. I am here today to tell our story because we have had so many special people in our life touch the process, so we in turn want to pay it forward and help others trying to figure out their puzzle pieces.

I know for as much heartache as the kids and I have faced in life, we have also been blessed that our struggle with autism pales in comparison to other families. We are also lucky to live in a city that has so many resources and so many people who want to help.

So where are we today? The twins just turned 4, and Tommy is well on the way to recovery and making strides all the time. He has come so far that his teachers, therapists, and I are often stunned by some of his milestones. There are still struggles we are working on: his speech, fine motor skills, and confidence in social circles. But everything is on track and our goal is within our reach.

I remember when I met with Tommy’s developmental psychologist to hear the diagnosis all those months back, and she asked me what dream I had for Tommy. “To see two backpacks going off to kindergarten, together side by side.” I see that image in my head every day and I believe it more than ever.

Recently, we were at another birthday party, and I was sitting on a bench watching my boys roll a hula hoop down a hill together. At one point they walked up the hill together holding hands: a miracle in itself. At the top Mikey proudly says to me, “Momma, I am helping Tommy.” Tommy smiles, looks me in the eye, and says, “Momma, Mikey is helping me.” They both laugh and look at each other like all brothers do and went off together to start climbing the tree stumps.

I sat there with tears in my eyes and realized in that moment that we were winning the fight. Tommy is going to be just fine. It was the first time since I had lost my husband that as a family we had found such peace. It was a moment captured and one that will forever be etched in my heart because it emulated all the goodness of life and the goodness to come.

Never lose hope…

Part Four of a Five-Post Series about one woman’s experiences with her son who has autism.

The steps to treat a child with autism are stressful and overwhelming… what to do, what not to do, who to talk to, where to go…. Those questions are endless, so just take it step by step and day by day and no further. It is sort of how I live my life… if you focus on what you can handle today and only today, things seem manageable. If I focused on my son Tommy’s next 20 years, the overwhelming magnitude could take me out at the knees. Here are some more tips to help you on your day-by-day journey.

5. Run all the necessary tests fiscally possible that will provide a blueprint to your child. Testing is getting more and more advanced, now providing tools to understand chromosomal makeup, allergies, toxins, vitamin deficiencies, etc. I am often surprised by the number of parents who do not know about medical testing. The tests proved crucial for Tommy. I learned he had a chromosomal deficiency in his methylation pathway which meant 1) His body could not break down toxins well, 2) He was off the charts in lead, arsenic, antimony and mercury, 3) His liver was stressed, and 4) He had some major vitamin deficiencies.

These tests provided a guidebook for me to make some personal and financial decisions about which therapies might work and others might be fruitless.

6. Investigate your rights. Know the law and know what your child deserves under that law from the school district, regional center, and your medical insurance. Each avenue is not easy, but if you understand it, you know what to fight for. The people in charge will know you know the rules. Go in educated from the beginning and never, ever take NO even if it means hiring an advocate or lawyer to help you.

There are so many children right now in need of services, and because of that the system is suffering which ultimately means our children are suffering. I have watched Tommy’s therapeutic preschool increase from 3 kids to 18 kids between November and June – just kids in 3-4-year-old class. Be strong in your approach and know what you are seeking, and have the medical documentation to back it up. Keep track of your child’s progress and if he is meeting goals. Know when to intervene and ask for additional services, and when your child is falling short of the critical steps in therapy.

7. Find social groups, set up playdates, join sports teams. Get these kids with other kids even if it means just going to the local park. I was fortunate to have the “perfect social therapist” in Tommy’s brother Mikey who was the first one to truly connect with him. As a parent, I think one of my original fears was, “Will he ever have friends?” I think every parent with a child on the spectrum has had that thought one time or another. Since social issues are such a cornerstone to the disease, this step is crucial during recovery. Social circumstances are often not only difficult for these children: parents struggle, too. Although these situations are hard and they tug at the heart strings, the more the child with autism works at socialization, the more hope there is that one day another child will say, “Hi, what’s your name?” and your child will look up, make eye contact, smile, and even one day say his name!

8. Take it one day at a time. Someone once told me, “Autism is not a sprint. It is a marathon.” You are the coach. Keep your team on track and stay positive. But don’t forget to take a moment out for yourself and breathe! Ask for help when you need it. This is one of the hardest steps for us as parents: realizing you can’t do it all is often traumatic for us since we harbor such innate fears and an excruciating need to protect our children at any cost. A step away for a moment or two will not detour them off course. It actually just might help because your child with autism will often pick up on the stress and exhaustion. Taking a break and returning rejuvenated and determined to fight will give your child the continued determination to fight, too!

Do you have any practical tips that helped you in your journey? We all learn from each other, so share what has helped you and your family keep up the fight.

Part Three of a Five-Post Series about one woman’s experiences with her son who has autism.

One of the major problems with autism – and there are many for parents – is that there is no guidebook. There is no tour guide. There is no manual. There is not one doctor. There is not one method. You alone have to figure out what is going to work best for your child.

My journey with my son Tommy has not been easy, but with the right tools you can learn the resources that are available that can help you figure out the puzzle of your child. You can become empowered with knowledge to help your family fight the battle along with the doctors and the therapists and learn to ask the questions that will ultimately help to figure out the puzzle. The mass amounts of information are overwhelming at first, but with time and a deeper understanding of the facets of the disease, you will start to see the important pieces that will deeply affect your child’s future.

Here are a few things that have helped our family in our journey:

1. Research, Research, Research. Before you start anything, you have to understand autism – really understand it. This leads to countless sleepless nights and many, many hours on the internet. You have to understand the latest therapies, biomedical treatments and research, current studies, genetic predispositions, etc. You need to continually update yourself since the landscape for this disease is ever changing. Spend time learning all the treatments including the main therapies such as speech therapy, occupational therapy, and Applied Behavioral Analysis (ABA) as well as some of the alternative therapeutic and medical therapies such as Relationship Development Intervention (RDI), music therapy, acupuncture, cranial osteopathy, hyperbaric oxygen treatments, homeopathic medicine, etc. Your research may hold the puzzle pieces you are looking for.

2. Find a doctor. You need someone who understands the disease and believes in the hope of recovery. Your doctor may be a developmental pediatrician, developmental psychologist, biomedical doctor, or all of the above if you can afford it. If your first choice does not believe in that hope, move on to the next. You need your doctor to support a belief that these kids can be treated and given a better life. We are not talking about a cure – we are talking about finding the answers that will be the ticket to unlocking the door.

With Tommy, I needed to address his disease both medically and therapeutically. One cannot work without the other. If the body is not up to par, the therapies are only going to work so well. If the body is being healed, your child has to learn new skills. As you start to understand the medical makeup of your child, you will understand why certain therapies have a greater impact than others. The teachers and therapists will start to notice the difference, too!

3. Work with your doctors to outline education plans as well as a medical approach every six to twelve months. The educational therapies such as therapeutic preschool, occupational therapy, speech therapy, adapted physical education, and ABA will have to be proposed to your local school system that should provide an Individual Education Plan (IEP) with specific goals for your child for the year. This plan will have to be updated. You need an established medical plan that provides a course of action and the priority of each medical treatment and test. With a plan like this for your child, you will recognize the steps to put your child on the path to recovery.

4. Contact all your local Autism charities and the national organizations such as Talk About Curing Autism (TACA), Autism Speaks, and The Help Group. Each provided me with different resources and information that proved incredibly helpful. They also provide resources and networks of families who are going through exactly what you are along with information on the latest medical news, financial grants, fundraisers, etc. Find an organization with a mission you believe in and find a support group through that program. The key is to find other parents like you who are also going through the process. And don’t forget that other moms are the greatest source of information.

Check back tomorrow for more tips to help your family on their journey.

Part Two of a Five-Post Series about one woman’s experiences with her son who has autism.

Tommy had been going through evaluations with the school district that prompted me in the days preceding the party at the duck pond to get a developmental psychologist’s opinion. A few weeks later Tommy was diagnosed with autism, and as a family of three, my boys and I began our journey.

At first, I would ask God…Why him? Why us? Why now? Autism was the most difficult thing I had ever been faced with as a person and as a parent. But my second biggest personal challenge certainly made this situation tougher.

I lost my husband, Brad, two weeks before my twin sons were born. I never really got that “get out of jail free card” you think you should have when you got to the other side of losing someone. But that journey through grief was like an ant hill compared to the mountain of challenges that autism would bring. The big difference though….with autism we had hope.

Brad, and I met in college. We were together 10 years before we married in 2002. A year later we found out we were pregnant with twins! We were living in California, and he asked me to move back to the Midwest, to his home state of Ohio, to raise our kids.

We left when I was 7 months pregnant.I retired, and we bought a house. Brad received a promotion. We were going to live the good life and live happily ever after.

We were set to move into our new house in two days. Brad was traveling on business. He called me he was going to watch a basketball game with some colleagues and that he was anxious to come home the next day to celebrate my birthday. I reminded him I was over 8 months pregnant and that “celebrating” carried a whole new meaning.

We hung up as he told me he would call me when he got back to the hotel. He said he loved me, and I said the same to him.

Those were the last words we spoke. I never received his “I’m home safe” call. Brad died a few hours later in a car accident, a drunk driving accident and he was the driver.

I awoke that night in a panic, and to this day I don’t know why. When I saw he hadn’t called, I dialed the phone and immediately got his voicemail. First instinct… I am going to hurt him when I get a hold of him. Second instinct… fear.

I never slept another wink that night, and in the early hours a knock came at the door.

In that moment I knew and our lives changed forever. I was thrown between an experience of death and an experience of life in a matter of two weeks… which is something my heart and head had a hard time getting around. Not many people experience that.

I truly believe our children were a gift from God because there was such purity in them and such true joy that all I could do was pick myself up and keep going. I cannot say the journey was easy, but I kept reminding myself of who Brad was in life and what he would say if he was standing in front of me.

I remember the day the fog of grief started to clear. It was late at night when the babies were asleep and all had gone back to their lives and I was alone. I was crying and I saw my reflection in the window. In that moment I felt him and knew I was at a crossroads. I could go one way towards darkness and misery or turn towards the light of hope.

I realized in that moment that no matter how much crying I did, how much I begged or prayed… he was never coming back. Why should I be sad all the time? I needed to learn to be happy again, that it was ok to be happy, and that and I needed to do it not just for the kids but for me, too.

I forgave him in that instant and knew I had to create a special life for the kids and me. This was not the period at the end of our sentence. This was not the end to our story. It was just the beginning.

I remembered the words he said so often that I used them for his gravestone…Life is a wave – ride it! At that moment I did not even realize how true that statement would become.

The boys and I closed one chapter in our lives and moved to the next and back to California a year later. I never looked back nor wondered “what if.” We were focused on the future and the positive of all that life had to offer since now we realized how fragile life really is. I was never going to take anything for granted and I was going to enjoy every moment…or at least try to!

The kids were my focus and were true angels because they represented all the innocence of life and carried with them such hope and a irreplaceable bond that would help them and me through the obstacle known as autism.

How have your life experiences shaped your attitude towards life, your children and you?

Part One of a Five-Post Series about one woman’s experiences with her son who has autism.

I will forever remember the day…

It was a beautiful Saturday afternoon, and my 3-year-old twins and I were off to a birthday party for one of our closest friends. When I pulled up my heart sank…it was at a duck park.

To most the location would mean nothing, but my stress factor rose immediately. Mikey and Tommy got out of the car, and Tommy immediately ran over to the ducks. Mikey’s attempts to convince his brother to join the other kids proved fruitless.

My friends saw my angst as I was pulled in separate directions. They took Mikey under their wing for the millionth time. For more than an hour, Tommy chased the ducks, over and over. My heart sank with every time I tried to get him to join the party… these were his friends – what was going on?

Deep inside I knew. All my worries about Tommy ran through my head… his barely having any words, lack of eye contact, extreme picky eating, tantrums, complete ignorance when someone was speaking to him, twisting his wrists, focus on certain toys, his knowledge of our driving routes and the anger when we did not go the way he wanted…

And most of all, the way he hugged me.

As the day went on, Tommy left the ducks once and joined the kids for some play with musical instruments. I was elated, but just as I sighed to myself, Tommy grabbed his ears and dropped to the ground in the midst of the crowd.

My heart sank and tears welled in my eyes as I ran over to pick him up. Tommy immediately ran back to the ducks and remained there until the end of the party.

In that instant, I knew without hesitation Tommy had autism.

Autism had been on my mind since Tommy was about one year old and cried through his first birthday party. The word was that needle in my stomach telling me the twins were developing differently, but the doctors would tell me… He is a twin. He is a boy. You need to discipline him. Don’t worry.

As I look back there were always signs. Since he was mildly affected, it was easy to dismiss the warnings. Looking back they were there, and I was just not ready to see them. Mothers with kids on the autism spectrum always talk about mother’s intuition and how they just knew. I think it comes from the bond between a mother and child.

And you can feel it in the way they hug you. Tommy was reluctant to hug, and when he did it seemed as though it was without feeling and for mere seconds. While Mikey would throw his arms around every person who crossed our doorstep, Tommy would back away from friends and family.

The lack of hugs is the one thing that always pressed on my heart. That is one of the parts that is so difficult for parents… you are just looking for that huge hug and the “I love you moment,”… and as you feel them pull away from you as you hold them closer, a piece of your heart is pulled away, too.

A hug with your child with autism is like standing at a crossroads with a door between you. When you learn your child has autism you wonder… how do I unlock that door?

Before the doctors told you, did you already know somewhere in your heart? What was your catalyst moment that made your heart realize what was going on? What was your deepest fear at that moment?