Learning to Cope

Today, December 9th, marks one year since Alex received his official diagnosis of autism.

As I've mentioned, the few months after finding out that Alex had autism were some of the toughest in my life. Just as everyone else does, I have my own ways of dealing with grief and my own shortfalls in the way I handle important matters. In a way, I felt paralyzed by the problem at hand. All of a sudden, my son had this disorder that I knew barely anything about, and the wealth and breadth of information to be taken in was overwhelming. What a quandary for a parent to be in: while dealing with some of the strongest feelings of grief I had ever felt, I, at the same time, had to be tackling the hugest and most important problem I've ever dealt with. So, I just had push through the sadness, anger, and guilt, put on my strong face for my little boy, and do what I needed to do to help him.

During this time, I remember being completely bombarded with information from various places. One of my shortfalls is that I just can't think about too many things at once. People kept referring me to websites and books and support groups, but I just couldn't find it in myself to pursue anything new at that time. The most important thing to me was to learn as fast as possible how to work with Alex during that important window (before age 3.) I sat on the floor with him through every Early Intervention session and absorbed everything I could so that I could carry out those activities when his providers weren't at our house. It was like tunnel vision. Paying expert attention to his therapy was the only thing I could stay focused on without feeling like I was going to have a mental breakdown. I had to get in control of something and I had to do it NOW. I had a strong need to start seeing results.

Once I began to feel like I had a handle on how to capture Alex's attention and help him work through his sensory issues, I was able to shift my attention and begin reading books and doing other research. Some of the reading, such as the Autism Speaks 100 Day Kit, which is intended to be used during the first 100 days after diagnosis, might have been more useful, say, about 265 days ago. The part that tells you about the stages of grief and that it's normal to feel shock, sadness, anger, denial, loneliness, and then (finally) acceptance? I could have benefited from that some time ago, but it's nice to read it now, and think about those stages in retrospect.

The thing that has been very recent and very important to me, has been connecting with other parents who have children on the spectrum. I've gotten to know some of the mothers of Alex's classmates as well as some others through a support group. The experience of speaking with others who truly can understand what it's like having a special needs child has been rewarding. The loneliness I felt is slipping away thankfully, but I can't imagine experiencing it any differently. I guess it's really true that the toughest experiences make you stronger. I'm only in the beginning stages of this journey with Alex, and I've already learned lessons about coping that I can take forward with me through life.

Changing Expectations

Alex went trick-or-treating for the first time this year.  He did great; the first few houses were a little overwhelming with lights, jack-o-lanterns, and Halloween music, but after that he got the hang of it. Sort of. He carried his plastic pumpkin and walked from house to house with me. Every time someone opened their door, he wanted to go inside. We went only to friends and neighbors' houses so he was able to squirm his way inside a few houses while I chatted. Each time, he immediately found light switches and turned them on and off, on and off. He was able to fill in the phrase "trick or treat" when I prompted him and he politely picked out one piece of candy when people offered him the bowl, and put it in his pumpkin. I was proud of him for walking all the way to the end of our street (1/4 mile or so) and back to visit almost every house.  He wouldn't wear his hat, but he was still adorable in his police officer costume.

So far, that has been the most "normal" holiday we've had with Alex. Even before I had kids, I looked forward to making memories with my family just as I had when I was growing up. I looked forward to birthdays, Easters, Halloweens and Thanksgivings, and especially Christmases. I loved our traditions around Christmas such as cutting a fresh Christmas tree and decorating it together, playing board games Christmas Eve night, then having monkey bread or cinnamon rolls and opening gifts together in the morning.

We enjoy holidays together but so far with Alex, the excitement has been in the form of me trying and failing to get Alex excited about things. So far, he hasn't shown that he understands when special days or events are coming. I just barely started to sense that he understood something was special about Halloween this week, but I don't think he knew what it was. He was able to adapt and play along when the time came, though, so at least he was able to enjoy the excitement of the day even if he didn't anticipate it.

One strategy I learned from Alex's early intervention providers as well as his school was the use of social stories. Social stories are stories that can be made up for an individual child or situation to help them understand and anticipate. I made a social story for Alex last year to help him recognize family members. It just consisted of some photographs of him with family members and talked about what was happening in the picture. "Alex, Mommy, Daddy, Nanna, and Grandpa are sitting down to have Thanksgiving dinner together." His preschool printed a social story that talked about his classroom and what was going to happen on his first day of school - the bus was going to pick him up, he'd go to his classroom and take off his coat, etc."

This year, I've created a social story to help him anticipate Christmas. I incorporated the religious aspect of it because that is important to my husband and I, but I want him to anticipate the trip to Nanna and Grandpa's (6 hours away) and what we'll do when we get there. He gets extremely thrown off by changes of routine so I'm hoping that preparing him weeks ahead of time for this trip will help. Also, up until his 3rd birthday party, he hadn't grasped the concept of opening gifts. We couldn't get him to tear paper or reach into a gift bag and once the package was opened, he wouldn't pay any attention to it in most cases. I'm hoping to get him excited about it this year. Gifts aren't the most important part about Christmas but I remember the magic and anticipation of Santa Claus's visit when I was a kid, and I want Alex to enjoy that. So far, he loves to read the book and sometimes shouts "Christmas!" He especially loves the pictures of pretty lights - I bet when the lights start coming out he'll get excited and maybe start to connect the dots.

I have to be honest that over the past year or so I've felt disappointed from time to time that Alex doesn't enjoy Holidays as much as many kids do. But I have to remember that it's not about what I want for him. I can share my traditions with him and if he has fun, that's great but he gleans happiness from other things in life too. I need to stop feeling bad that he "misses out" on the excitement of Holidays and remember that he has fun and we enjoy each other over many moments of every day. That is a true blessing.

The Diet

Over the past few months I did some reading about the biomedical, or "whole body" approach to treating autism. Until he was 3, Alex was receiving about 18 hours per week of in-home, one-on-one Early Intervention therapy. When he turned 3, we got an Individual Education Plan (IEP) and he now attends preschool 5 days a week. There, he gets one-on-one occupational therapy, speech therapy, physical therapy, and general special education. He also gets in-home, one-on-one Applied Behavioral Analysis (ABA) 6 hours per week. These therapies are proven to work and improve outcomes in a very high percentage of children with autism.

In the autism community, there is a huge movement to treat autism as a whole-body problem, instead of just a neurological one. Many books have been written, much research has been and is being done, and many parents are experimenting to see what might work for their child. This approach, however, is not (yet) accepted by the wider medical community. It's hard for parents to find a pediatrician who will get on board with this approach; although most of them are aware of it. Some doctors are associated with an organization called Defeat Autism Now! (DAN!), and one called Stop Calling It Autism (SCIA.)

There are many parts to this movement, some of them very controversial, such as detoxification of heavy metals from the body. One of the most widely used parts is diet change. Many people with autism suffer from chronic diarrhea. Some believe that underlying food intolerance might be the culprit and two major suspects are gluten and casein (the protein found in all dairy products), with a third major one being soy. When a person has a food intolerance, or especially several, their body doesn't digest and absorb nutrients efficiently, so they can also have nutritional deficiencies even if they eat a well-balanced diet.

My husband and I talked a lot about it and decided that we should at least give Alex's diet some careful thought and try some changes. We first skeptically tried a specially formulated vitamin supplement called Super Nu-Thera from Kirkman Labs. It was amazing what happened; within two weeks his eye contact improved and he had a major jump in his communication skills. He started pointing to things, which he had never done before, and started coming out with 3- and 4-word sentences on his own. I really hadn't expected a noticeable change but there was no question that the vitamins made a difference. This is what inspired us to try some further diet changes.

We decided to try the Gluten Free/Casein Free (GF/CF) diet. I started weaning Alex from all gluten and dairy products and made a chart to record changes in his behavior (I began recording food intake and behavior about 2 weeks before we started the diet.) I found a DAN! nutritionist and she suggested we try some other things such as a DHA supplement and a probiotic, which Alex's regular developmental pediatrician strongly warned us against giving him. In fact, his developmental pediatrician was basically rolling her eyes as I discussed the diet with her. She was very non-supportive of our trial. I feel that as long as I'm sure Alex is getting enough of the nutrients he needs and I'm replacing the wheat and dairy with other healthy foods, it's not going to hurt him and it may help him.

After about 4 months of the GF/CF diet without noticing any major behavioral changes, I decided to gradually reintroduce gluten and dairy to see if I noticed anything at that point. Alex has been back on a "regular" diet for about 2 weeks now and nothing seems different besides a little gastrointestinal issue that I won't detail. I'm a little disappointed that we didn't see the big improvements that some parents observe, but I'll admit that I'm relieved to not have to maintain the diet any more.

What I Wish Someone Had Told Me

There are a number of subtle and not-so-subtle things I wish I had known over the past couple of years that might have helped us to detect Alex's autism sooner. Although I know that he's in good hands now, I can't help but wonder if a few more months of early intervention before he turned 3 would have improved his outcome even more.

I've heard from way too many parents in a similar situation that their regular pediatrician was not very helpful. When I first brought up my concerns to Alex's doctor at his one-year checkup, he referred us to early intervention. That was fine, and I'll get into my experience with the early intervention (EI) assessment later, but it was Alex's two-year checkup that I have a problem with. The doctor gave me undue confidence at this checkup and it was only two months later that Alex was found by a second EI assessment to have significant delays in several areas of development. I told the doctor at Alex's two-year checkup that he would still get fixated on spinning objects, and that I was concerned about his communication skills. I remember the doctor asking me if he waved "hi' and "bye" and I said that he had waved a couple of times but didn't do it consistently. He also asked if Alex pointed at things and when I said he didn't ever do that, the doctor told me to "look for" him to start doing that. At that point I had no idea that the absence of those two normal-kid behaviors were red flags for developmental problems, particularly autism. I wish the doctor had told me that. Another question he asked me at that appointment was if Alex used two-word phrases, which was an appropriate milestone for his age. This one was tricky. I said that he did use two-word phrases but in retrospect, I realize that his two-word phrases were all mimicked phrases as opposed to independent ones. For example, he'd say things like "my nose" or "kitty cat" but he said them with the same inflection and intonation that I used or that he heard on a Baby Einstein video. I wish I had known the difference between reciting the phrases and using them effectively to communicate. The thing about that appointment that still bothers me the most is when the doctor put a small light directly on Alex's finger and told me that an autistic child would have no interest in it. One of Alex's obsessive fixations is lights, light switches, flashlights, and the like. Of course he was interested in it; probably more so than a neurotypical ("normal") child! Unbelievable.

The early intervention assessment that Alex had at 15 months old also gave me undue confidence. The last thing any parent wants to hear is that something is "wrong" with their child. So when the three ladies who did his assessment excitedly informed me that he didn't qualify for services, I was relieved. I was happy to take what these experts told me and put the concerns out of my mind. I was totally unaware that I could have sought the opinion of a developmental pediatrician at that time. I didn't know there was such a thing. An expert on autism may have been concerned by the presence of behaviors in Alex which just weren't part of the early intervention evaluation's list of questions. Early intervention was looking solely for delays and while that is often the first indicator of autism, there are more pieces to it. Early intervention's standardized test did not take into account Alex's spinning objects or his occasional toe-walking. It didn't take into account little things that added up over time, such as the fact that Alex never taught himself to hold his own bottle as a baby, or that he never reached up to be picked up. Because Alex was my first baby, I didn't know that babies were supposed to teach themselves those things.

Now, I'm not so prideful as to think that it's everyone else's fault we didn't catch Alex's autism sooner. I've spent plenty of time criticizing my own failures and beating myself up over not figuring it out. I hate that my parents, even after the first EI evaluation at 15 months, continued to think that something wasn't quite right, but that I dismissed it every time it was mentioned. I was being stubbornly confident that nothing was wrong with my baby. I tell other parents to stop blaming themselves because we can't be experts on every disorder or problem our children could have. But at the same time, I am disappointed that I didn't better-educate myself. I'm also disappointed that I stopped closely watching his milestones and development after the first EI assessment, not thinking about the fact that developmental problems slowly reveal themselves over time. So by the time we did realize it, we could read a list of common behaviors in autistic children, and see that Alex exhibited a good majority of them. It was quite jarring to read about thousands of children exhibiting these behaviors which I thought were just part of my quirky little boy's personality.

The main lesson I've taken away from this experience has been that parents have every right to ask questions and question the answers. Doctors don't know everything and I believe that some of them are so used to over-worried parents that their main goal is to ease every concern brought up. We don't have to settle for an answer we're not comfortable with. We are our childrens' biggest advocates, we are the ones who care the most deeply about them and know them best, and they are depending on us.

One Of the Best Years; One Of the Hardest Years

The year since we discovered that Alex was autistic has been an emotional one. Of course I was devastated at first. I cycled through so many of the thoughts that I think most special needs parents go through. I wondered what I did wrong to cause this. I wondered if Alex would be able to go through school and make friends. I worried that he would be bullied. I wondered if he would find a career that he loved or if he would even be able to live on his own. I wondered if he would get married and have children. I still think about these things, but I now realize that the answers to those questions are not to be known for some time. The important thing is that I focus on what stage he is in now. That's the only way I'll be able to help him have the best chance at a good outcome in any area. The grief is never gone completely, but I've definitely felt a shift in myself over the past few months. I'm no longer grieving for the "normal" (or maybe a little "above average") child I always assumed Alex would be. I mean, don't we all want our children to excel and sail through life, impressing us and exceeding our expectations every step of the way? Alex will not be "above average" or even "normal" without special help from his parents and teachers and it was hard to accept that. Really, he is probably brilliant but has enormous trouble expressing it. There's no knowing where he will be in 20 or 30 years, but it's not my job right now to dwell on it. Or what I should say is, it's my job NOT to dwell on it.

I've also learned so very much this year. Now that I am fully immersed in the world of autism, I realize that I knew basically nothing about it before. Having spoken to a lot of people over the months on this topic, I've learned that many people know nothing just like I did, or have a very limited perspective. Those who know more about autism tend to be those who have some connection to an autistic person, or, obviously, those who work with autistic individuals - nurses, teachers, etc.  One of the most important basic things I learned is that autism is a neurological disease, but it is felt as a whole-body problem. There are sensory issues which can account for some of the "odd" behaviors people may witness. For example, Alex spins objects a lot and watches them close-up. He does this when he's feeling "disregulated" or overstimulated and needs to block out sensory information. His sight and sound and possibly even smell senses are always on high so he has to find ways to block out the world because it's too overwhelming. It's pretty common for autistic individuals to be oversensitive to loud sounds such as crowds of people laughing or clapping. I remember reading in Temple Grandin's book "The Way I See It" (highly recommended!) that to some individuals, fluorescent lights are like strobe lights. When I read that, I knew why Alex inevitably threw a tantrum every time we went to the grocery store.

Many autistic people also have chronic gastrointestinal issues which can contribute to their behavior. There is a large movement in the autism community which focuses on suspected food sensitivities, vitamin deficiencies, yeast overgrowth, parasites, and other problems. We've explored some of this with Alex, but that is a major discussion which I won't get into right now.

This has especially been a year of learning about Alex's needs, specifically. There's a saying in the autism world that when you know one person with autism, you know one person with autism. It is so true; there are no two cases alike. There is truly a spectrum. With the help of Alex's service providers during the early intervention months, I learned and developed a range of methods for working with Alex. That's another huge discussion which I won't get into now but I can say that it is a work in progress; how I and Alex's teachers work with him is always changing. Discovering new ways to help Alex learn is my constant mission.

So, this year I have experienced some heartache and frustration, but I have managed to channel a lot of it into determination and education. The great thing is that I get to celebrate with Alex every day. When he does a simple thing like make eye contact with me, say "hi Mommy," follow a direction, or answer a question, it makes me feel so good. I, along with his teachers, have worked so hard on helping him master these things that just a simple "hi Mommy" fills me with so much joy that it's hard to express. Every day I'm telling Alex what a good job he's doing on lots of little things. I look forward to continued progress and instead of worrying about what the future will bring, I'm learning to get excited about it. I'm excited to have a back and forth conversation with Alex some day, and I'm looking forward to seeing his music ability develop. I look forward to seeing more of that sweet personality of his blossom as he's more able to express himself.

This has definitely been a life-changing year for us. It has been difficult but every time Alex smiles or laughs, every time he hugs me or snuggles up next to me on the couch, I am reminded of just how worth it the hard times are.

One in 88

My beautiful son Alex is the one in 88. It was a little over a year ago that my husband Michael and I became aware that Alex was autistic. We had to wait a few months to get an appointment for a diagnosis at Boston Medical Center, which finally came in December of 2011 when Alex was two and a half.

We knew for a few months before he was diagnosed, though. At Alex's one-year checkup with his pediatrician, I expressed concern that he always seemed to be spinning objects and toys, and that since he was a baby, he liked to stare at ceiling fans and round objects such as clocks. There was also some family history of ASD, so I just wanted to bring it up. Other than those two things, I wasn't that worried. The doctor assured me that everything was fine, he wasn't worried; after all, Alex had been meeting his milestones just fine up to that point. He gave me the name of an Early Intervention center and said that if I continued to be concerned that I could call them any time to have Alex evaluated. When he was 15 months old, my dad called me and wanted to talk about some things that he and my mom noticed recently when we had taken a vacation together. My parents live in upstate New York and we only get to see each other every few months. When they spent a few days with Alex, they noticed he exhibited some repetitive behaviors that they had learned were often present in autistic children. After hearing their observations, I decided to call the Early Intervention provider to have Alex evaluated.

Three ladies came from the Anne Sullivan Center to our house and put Alex through a series of play-based tests to evaluate his skills in areas such as receptive language, expressive language, social skills, self-care skills, and motor skills. In order to qualify for early intervention services, he had to have a delay in one or more area of at least 30%. Based on the test, Alex did not qualify for services. The ladies were delighted to tell me that.

Fast forward about 9 months. At Alex's 2-year checkup when I raised concerns about his communication, his doctor again assured me that he was fine and there was nothing to worry about. He did some silly test where he put a laser pointer on Alex's finger and said if he was autistic, he wouldn't pay any attention to the light (and now I know just how wrong that was - that might apply to some autistic individuals but certainly not all of them!) A few weeks later, I was picking Alex up from daycare and noticed that a little girl who was about 6 months younger than Alex was talking and interacting in a much more advanced way than Alex could. I mentioned it to his daycare provider, and she said "yes, I was going to look up autism tonight."

I did the same thing. That afternoon, I did some Google searches for autism and as I read about the behaviors and delays associated with autism, it hit me like a ton of bricks. I knew that afternoon that Alex was autistic. That was August of 2011.

I called the Early Intervention center again and they referred me to their affiliate, Thom Mystic Valley Early Intervention because we had moved to a new town. This time, Alex had a 30% delay or higher in several areas; in fact, he tested lower in some areas than he had 9 months before.

Alex began receiving in-home, one-on-one early intervention floor time and ABA-style services right away. However, without the official diagnosis of autism, insurance was only required to cover about 5 hours a week of services for him. For children with autism, 20-25 hours per week of one-on-one services is recommended, but you have to wait months to get an appointment anywhere around the Boston area. I got involved in a study which got us an expedited appointment; we had to wait only 2.5 months versus the usual 5-6 months.

This is only the beginning of the story. Our lives have changed so much in the last year (both because of Alex and because we welcomed our daughter into the world in July.) There are so many layers of pain and isolation and also joy and celebration that can come with  being a special needs parent. I have a lot more to share about what I've learned and what we experienced. There are things I'd like to share that I wish someone had told me about detecting autism in my son. There are also misconceptions and stigmas attached to autistic individuals and families that I wish so many more people could understand. That might help folks refrain from saying hurtful things without realizing. I'll be writing more soon.