It's a Wonderful Life

We have said since (almost) the first moment that Jem was diagnosed that there would be a blessing, or even many blessings on the journey we would take through Autism. My cup runneth over. I wouldn't wish autism on anyone, ever, but it has brought wonderful people into our lives and helped us to appreciate all the people who were already in our lives.

I will post below what some friends of ours did recently (they were inspired by Oprah's The Big Give to do something for our son) Friends who have watched the video all say the same thing, "It's like the final scene in It's a Wonderful Life!" It is and it was, that is exactly what it was like.

I do have an autism miracle going on in my living room...and its spreading!

Why We Do GFCF

To GFCF or Not to GFCF

I am a Mom. This comes before everything else. I also happen to be a Mom of a fabulous four year old boy with Autism. I don't get a lot of time to talk face to face with other "autism Moms", I tend to do most of my conversing via the computer. But whether it is face to face or cyber, it seems like the topic of conversation always comes back to the GFCF diet. It makes sense, for those of us who have our children on the diet it is our daily reality. For the families who are not on it there is an ongoing conversation about the merits and the actual feasibility of it. I will tell you honestly that when we finally came out of denial about our son's autism, I was so desperate to do anything that would help that I would have sung naked hanging upside down from a rope if someone had told me there was a 10% chance it would help my son. So when someone said, "You could try the Gluten Free, Casein Free diet, there's no conclusive evidence that it helps, but you can try it." - I was only too thrilled to have something to do.

It made sense to me - I have multiple food allergies, wheat being one of them, so gluten free was actually easy for me. It was a big adjustment for my son, but I already knew the ins and outs of a gluten free diet so I wasn't stressed about what to feed him, and I knew that he would adjust quickly. Dairy free was a whole other ball of wax, but by the time I realized how challenging it was going to be, we had already seen such improvement in our son that I knew we were in for the long haul.

I am a fan of the GFCF diet, I love to help other parents figure it out. Please know that I do not sit in judgement of those of you who have not tried it. All of our kids have different issues, so it would be impossible for me to tell you - This is easy, why aren't you doing it? But I will tell you that I vehemently believe that it is worth a try - a good "college try" - to see if it works for your child.

My mother laments about the diet - "Isn't he ever going to get to eat ice cream? What kind of life is that?" My answer to her is simple - He can have ice cream at any time - but at what price? Without ice cream he can speak and look people in the eye, walk down a sidewalk, hold my hand, ask questions, and have friends. With ice cream in his body he can't do any of those things. What kind of life is that? That is our truth.

When we started the GFCF diet our son was down to a 5 word vocabulary, which he used sporadically and compulsively. Within a week of starting the GFCF diet he was adding 5 words a day to his vocabulary. It doesn't work that way for everyone, some people see little or no change, others see the benefits after being on the diet for 6 months. All I can say is I would have been thrilled with only a little change. Progress is progress. And at the end of the day, the diet is healthy, much healthier than the average child's diet. So what do you have to lose?

I ask Mom's that all the time and their answer is usually about fear - Fear that their child won't eat, fear that they won't know what to feed their child, fear that is will be a huge waste of time that will garner nothing. I'm willing to help anyone who wants to give it a try. We have tried all of the diets at some point and have kept elements of Feingold and SCD, but we remain strictly GFCF. Our child eats really well and I spend very little time preparing his meals - I'm not one of those moms who is constantly baking. - I love to solve problems though, so whenever we have an event or a special occasion I try to come up with an appropriate substitute. Some of my concotions are hits others are not. Our day to day meals are incredibly simple though, something anyone can pull of easily.

Standing in my Truth

My heart goes out to all of the families who are in the beginning stages of diagnosis and treatment on this bumpy spectrum that we are all a part of. Just recently we passed the two year anniversary of our son's diagnosis. I can still remember the feeling when the developmental pediatrician said AUTISM. I had known for months and secretly suspected and worried for even more months. I had looked forward to the appointment, knowing what the diagnosis was going to be and telling myself, "Once we have the diagnosis, we will know what to do to help him." That's what I thought. Still when she said the "A" word my heart stopped - somewhere deep in my body I had held onto a tiny hope that maybe, just maybe I was crazy and I would sail out of this appointment without a care in the world. It wasn't how things worked out. So my head reverted back to the thought that we could now get him help.

The true cruelty was that "help" was really unclear. The people around us immediately started making suggestions. Floor time was something that was loudly proclaimed as a saving grace. And very early on people we trusted - including the diagnosing physician - warned us that ABA was very bad and not at all for our child. I listened. But something in me encouraged me to do more research. Then a couple of other people recommended ABA, I felt like a dog chasing its tail. Was it good or bad? And what about diet? Did this gluten free diet thing work or didn't it?

One thing that really struck me was that everyone was so adamant. If they were in the Floor time camp, then they were adamant that it was great and ABA was horrible. If they were in the ABA camp then they were adamant about ABA being great and floor time was useless. And the diet was even worse - there were parents who said it was miraculous and there were parents who said that it was a bunch of lies. It was mind blowing. I prayed for a crystal ball so I could look into the future and know what would work for my child. I researched and I worried. I was like a boat swaying to extremes. In most couples with a child on the spectrum there is one parent who does the lion's share of the research - that was me. Every night my husband would ask me what I had learned and I would share all the contradictions I had come across. It was frustrating to say the least.

A bunch of things happened to make things clearer. First I realized that the only people saying negative things about the diet were people who had not put their children on it. There were a few parents who had put their children on it and had not seen results, but they actually said they felt like the diet was healthier than what their children had previously been eating, and they kept their children on it for that reason. The people saying glowing things where parents who had put their children on the diet. That was enough for me.

We put our son on the diet. At the time he had a vocabulary of only 5 words which he used only periodically. One week on the diet and he was adding 5 words per day. And we had not started any therapy yet. 2 weeks on the diet and we got occasional eye contact and I could walk with him without constant difficulty. I don't debate the diet with anyone, ever. I consider it a waste of time. I believe you have to try it to see if it works for your child and I offer my help to anyone who wants to try it but is afraid it will be difficult.

The ABA/Floor time debate was a little harder. Our Son was 2 1/2 when diagnosed - The regional center (we live in California) set us up with a provider for therapy - they asked me who we wanted and I had no clue - I asked them to suggest someone, they said they couldn't - At this point I didn't even know that there were alterative therapies, they were offering it for free, I was so thrilled that we were going to get any help, so I said -"Give me the one most people choose." It worked out okay, but when I think back on it, I get shivers. If I had adopted that attitude always I don't believe we would be where we are today.

The provider that we were referred to was floor time based. There were some elements that were successful, but mostly it was not successful. As we approached Jem's third birthday the regional center kept asking if we wanted ABA services - after he turned three, it was all they could offer us (so we were told)- I now know this is not true, but as things turned out I am glad I thought it was the case. I did more research - I found HORRIBLE things - one mom on line had just TERRIBLE things to say, I listened but I didn't accept it as the gospel truth.

We had to make a decision and I couldn't decide. So I prayed, and I said to my husband that I wished I could meet a family with a child who had been doing ABA for a while so I could see what it manifested. (The DP had told me it created little robots! I didn't want a little robot!)

The next day (I'm not kidding, it really was the next day!) I found myself in the home of a family with a son with autism who had been getting ABA for 2 years. I was there on business, sent by someone else - a total random coincidence - but not - It was the beginning of our miracle. The couple sent me home with a book, A Real Boy which is one Mom's account of her son's journey through ABA with CARD - the Center for Autism and Related Disorders.

I had never heard of CARD before, even though their headquarters is just 20 miles away. Now they are such a large part of my life it seems odd to realize there was a time when I hadn't even heard of them. That day is that stranger’s home, I saw their son, he was affectionate, talkative and made eye contact, he talked and listened to his parents, he laughed. He was a very regular little boy; there was nothing remotely robotic about him. I saw him and these stranger's lives and I knew that was what I wanted for our son.

Now almost 2 years later I think back to those early days when I hung on every word that anyone had to say about autism, and I am relieved that didn't listen to the people who spouted negativity, that I continued to ask questions. I am still asking questions and thank God my little boy is too.

My hope in writing this is that if someone is in that spot and having to decide about what treatment to seek, they can at least look at the choices we have made and know that they are an option that has gotten great results for us. Today I need to add my voice to the debate, because I can't bear the thought of someone not going on the diet or refusing ABA because of negative comments.

I can only tell you my truth. My truth is that putting our son on the GFCF started us on a road to being able to communicate with our child. Then CARD taught him how to learn. We are not done, we still have a ways to go -But we have come so very far, so very far. We frequently get people who question the diagnosis now, even doctors. It is thrilling irony that people have no idea how far we have come and how much work it has taken. When we tell people, first they are in disbelief and then the say something along the lines of him being clearly high functioning all along. We know where we have come from and it was not from the land of high functioning. So here I am, standing in my truth for all to see. I hope it is useful to someone.