Wednesday, December 31, 2008

New Year, new beginning and all that stuff...

New Year's Eve has never been my favorite holiday. I tend to think too much about where I thought I'd be by this time. This is especially true since autism came into the picture. Every year I've thought this would be the one when we'd reach recovery. Becca's getting older and I keep thinking we're losing precious time. But then, I have to think about all the wonderful changes that have occurred this year. GFCF is bringing about improvements, Becca has had several little language explosions, and we're getting much better services and therapies. We're also no longer dealing with our school district! Getting her out of the school system was probably the greatest change we could ever make.

Right now we're enjoying a mini-vacation, visiting my family in Rhode Island, and as far as vacations go it's not too bad. OK, it's New Year's Eve and we're snowed in, but it could be worse. The hotel room is comfy, and I consider booking the hotel rather than actually staying with family a real sanity-saver. Becca will never tire of the hotel pool, and I've enjoyed the hot tub. Yesterday we went out to breakfast, went ice skating, and saw a beautiful Christmas light display. Sounds almost like a regular vacation, right? Well.....

Will we ever be able to go to a restaurant and not ask to see ingredient labels before ordering something as simple as a hamburger? Will we always have to explain what gluten is and how cross-contamination occurs? It's not so bad when it's just Ron, Becca, and myself. But we're visiting family and friends here, and we are constantly explaining to them why we can't eat in certain restaurants. Then there is the issue of Becca's stamina. We can't always make plans in advance because we don't know how much Becca will be able to do. Ice skating had to be cut short after just a half hour because that's all she could handle. Ron and I are used to this. We enjoy what we can and make the accommodations Becca needs. But this is no fun for the rest of the family. This has happened on so many visits here, and not everyone gets it

I also feel my son is getting short-changed. James is twenty-five, and he really does understand Becca and her needs, but I can't help feeling this isn't fair to him. I know it would be worse if they were close in age and he had to experience this on a daily basis. He's an adult and has his own life, but I would still like to be able to be there for him and also spend time with him without autism always being our main focus. I find it hard to even have a conversation with him or with anyone without autism and Becca's needs being brought into it. And it's not just when we visit him here. When he comes home for a visit he finds a home that is centered on Becca's needs. I can't cancel all of her appointments. He will come along with us to speech or OT. Not once has he ever complained, but it can't be much fun for him. Maybe I wouldn't feel like this if he hadn't been through so much in his own childhood. His early years were so traumatic. Maybe that's why I still feel he needs some undivided attention even though he's an adult. He was still a teenager and living at home, struggling with his own issues, when we first started getting services for Becca. I found it so hard then to meet the needs of both a teenager and a baby with complex needs, so maybe I'm still feeling some guilt over that.

At least James does understand. I can't always say that for everyone in our life. There are those that avoid spending time with us. We're probably not much fun to be around. There are others who are disappointed in us because we are not meeting their needs, being supportive of them, etc. I guess New Year's is as good a time as any to take a good hard look at the relationships in my life and really think about what is healthy for my family so that we can move forward. I have to stop putting myself in situations with people where I'm constantly walking on eggshells. Ron and I have talked about this at length and we know we have to make changes. I have to stop pretending that everything is normal and that I can do everything and meet everyone's needs when we really have almost no real support. For my family's well-being and my own sanity, this is one New Year's resolution I can't afford not to keep.

Sunday, December 28, 2008

Long before Becca......

I had adopted James, my now twenty-five-year-old son. I was twenty-four and single when I got custody of him. He had just turned three but had been spending weekends (and longer) with me and with other members of my family for over a year. For reasons I won't go into, I had been feeling protective towards him even before he was born, and somehow I always knew he would be my son. I am not a person who wants to take children from their parents. But James needed to be adopted, and I wanted him. The adoption process took nearly three years.

Parents who want to recover their children from autism are often accused of not being able to accept a "less than perfect" child. Those aren't my words, because in my eyes my children really are perfect. This is the crap that we parents get thrown at us when we want to recover our children from a devastating medical condition. It couldn't be more untrue. Before I adopted James, he was developmentally delayed and appeared to have signs of autism. In fact, before he came to live with me he seemed to be more likely to be on the spectrum than my daughter ever was. He had very few words and would sit silently all day playing with his shoes. When held, his arms would hang limply at his side. I knew so little about autism then. My brother-in-law, a psychology major, observed him and thought he showed all the signs. That made no difference to me. I wanted to adopt him. It was my choice. As it turned out, James did not have autism. He had suffered unspeakable abuse at the hands of his biological mother. For three years he had been living a nightmare. I don't pretend to be a perfect parent by any definition. I made countless mistakes. However, when removed from the abusive situation, he did thrive, and with the care and the therapy he needed, he recovered to the extent possible when one experiences something so traumatic. It has not been easy for him. But at twenty-five he has graduated from college, works in a psychiatric hospital, and is a caring, thoughtful individual who is a wonderful son and friend, a person who gives back to the community. I am immensely proud of him!

I was a single parent until James was twelve, when I met Ron. At that point I had had enough failed relationships to make me not even believe in marriage. I had finally gotten to the point where I was happy to be single. I figured I would eventually adopt another child. But Ron and I became friends, and it wasn't long before I decided I was going to marry him. First I had to get him to at least ask me out on a date. Once that was accomplished, things moved quickly. We knew within a couple of weeks that we would be married. It was important to me that he wanted to adopt James and that he wanted more children. We were married the following year, in a big church wedding followed by a reception that was so much fun, our friends are still talking about it almost twelve years later. He and I had both experienced our share of hurt and loneliness, and it seemed that it was all behind us. We had so many dreams, all within the realm of possibility. I don't think we were being unrealistic, but we had no idea how our life would be turned upside down.

Almost as soon as we got married we wanted to have a baby. I knew I might have difficulty getting pregnant, but I wasn't prepared for the heartache of infertility. It was difficult to pursue fertility treatments because Ron was retiring from the Navy and we were getting ready to leave Rhode Island and move to New Jersey. Once settled in New Jersey, I found a fertility specialist, and after just one cycle of Clomid I was pregnant!

All mothers have dreams for their children, but when thinking of my baby's future I couldn't help but think of my son's past. I knew my baby would never have to suffer the way James had. She would be raised with so much love. I just assumed she would always be happy and content because she would be surrounded with love. I felt more prepared to be a parent this time around, being so many years older than I had been when I adopted James. I felt like I had dealt with a lot of baggage in my life and was a better and more patient person. And there was a certain self-satisfaction in thinking I was doing everything right. I think I was guilty of feeling a little smug. I thought if I ate right, took my vitamins, and got good prenatal care, I'd have a perfectly healthy baby. Before she was born I interviewed a pediatrician. I knew I would be the kind of parent who read all the baby books and would never be late with well-child visits and vaccines. I was determined to be the perfect mother!

Pregnancy was difficult. We decided the move to New Jersey had been a mistake and couldn't wait to leave. Ron had retired from the Navy and was not happy with his new career. James, now fifteen, was dealing with serious depression. Back in Rhode Island, my mother was showing signs of Alzheimer's. We moved to Pennsylvania just one month before Becca was born. I was not close to my in laws at that point, and all of my family and friends were in Rhode Island. I felt terribly lonely and isolated. It was a stressful time for us as a family, but I felt everything would be OK once Becca was born.

My new obstetrician in Pennsylvania didn't seem concerned when I went ten days past my due date. The nurse practitioner in the practice wouldn't even let me see the doctor and didn't listen when I said I couldn't feel the baby move anymore. I had Ron take a day off work and go with me to see the doctor because I figured they would listen to him. They did. What's more, the doctor looked at the results of the non-stress test and sent me to the hospital for another test. In the meantime, we had had another ultrasound, and it showed little amniotic fluid and a deteriorating placenta. I was furious at the doctor for letting me go so far past my due date. When I got to the hospital they admitted me right away with the intention of inducing labor. But after running some more tests it showed Becca's heart rate had dropped, and the doctor had to do an emergency C-section. I was terrified that I was going to lose my baby right then and there. I remember thinking we had come all this way and I was so in love with my unborn baby, and now I was going to lose her. The doctor assured me my baby was going to be fine but couldn't go through a long labor and that was why she had to do a C-section. I calmed down a little and started to realize that at long last I was going to see my little baby girl.

Becca was born on September 15, 1999, at 1:26 AM. When I first held her she was extremely alert, eyes wide open looking right at me. She latched on and nursed right away with no difficulty. I felt such a sense of relief. She seemed perfectly healthy. I don't remember much else about that night other than being completely exhausted, and too excited about my new baby to sleep much. Ron and I spent most of the night talking about her.

I have no recollection of ever signing permission for a Hepatitis B shot. Maybe I did, but I don't remember doing so. Becca spent part of the morning in the nursery, and when she was brought to me she was fussy and unable to sleep. I didn't think that was unusual for a new baby, but I was disturbed by the fact that she now had difficulty nursing. There had been no problem at all right after she was born. We struggled with it throughout my hospital stay. The lactation consultant said I was doing everything right. But we just couldn't get her to stay latched on. I was frustrated by the long hours she had to spend in the hospital nursery every morning. Instead of taking each baby in there one at a time to do whatever it is they do in there, they would take all the babies at once and wouldn't bring them back until they were done with all of them. I asked to leave the hospital a day early so that we could get into a regular nursing routine at home. But it wasn't any better at home. To make a long story short, she lost more than ten percent of her birth weight and became so weak that the pediatrician said I had to supplement with formula. She couldn't tolerate milk-based formula and we quickly switched to soy. She became stronger, gained weight, and very quickly became the alert wide-eyed infant I had held the morning she was born.

Becca met some of those early milestones right on time. She held her head up quite early and seemed very aware of her surroundings. Very early on she started babbling and cooing. She loved to interact with us. It was easy to entertain her. She laughed when we did silly things. She seemed to be trying to talk directly to us when she was amused by something.

Two things concerned me. One was that she was very gassy and often seemed uncomfortable after feedings. The other concern was that she hated being placed on her belly. Other than that, I didn't see anything that concerned me in those early months.

I can't say I saw major changes after the vaccines. But when I look back at her records and how they coincide with her development, I can see where she started to regress with each vaccine. It seemed there was a cumulative effect,with the most significant, yet still rather subtle, changes taking place after the DTaP. When she was about eight or nine months old I was concerned that she wasn't crawling like a lot of other babies. But I was told some babies never crawl. She could remain sitting up if placed in a sitting position, but she couldn't pull herself into that position. By one year she wasn't pulling herself up to stand, and she wasn't even close to walking. Her one word was dada.

I made the mistake of scheduling her one-year visit right on her birthday. It wasn't the kind of day when you want to hear bad news. The pediatrician wanted her to have a developmental evaluation, as she was behind in her motor skills.

It took three months to get an appointment with the developmental pediatrician. It was at that visit that we got a diagnosis of global developmental delay. We started early intervention services right away. Becca made great progress, but I had no idea that the services were not nearly enough. I had never even heard of ABA or Floortime back then.

There's so much more, but that's basically the beginning of her story. She's now nine years old, and my entire world revolves around her and her recovery. I hope someday I will be writing that she truly is recovered. That is my greatest dream!

Well, it's not a death sentence.....

That's what I kept telling myself when we got the diagnosis. If you have a child on the spectrum then you know all the emotions, the shock, the denial, the sense that you knew all along that you'd be hearing those words. It wasn't like we were totally unprepared. We'd had an earlier diagnosis of global developmental delay. The developmental pediatrician had even discussed the possibility of an autism spectrum disorder, but had hesitated to label it as such since Becca was improving so much and making progress. I remember anticipating that visit to the doctor. Becca was three years old and had started preschool. It had been a few months since the doctor had seen Becca, and I was just so sure that she would see even more progress and forever put to rest any concerns about the possibility of autism. Instead, I learned just how far behind Becca was in all areas of development, just how "atypical" she was in language and socialization, and how she did indeed meet the criteria for a diagnosis of PDD-NOS. My heart was just sinking as I broke the news to my family. My husband Ron had not been at that visit with the pediatrician, as we had thought it was just going to be a typical well-visit with the pediatrician and I hadn't wanted him to take time off from work. He was less prepared for the diagnosis than I was. I felt like I was dropping a bomb on him. Then I had to tell our son, who was eighteen at the time and going to school out of state. My entire extended family was in Rhode Island at the time. My in-laws lived less than an hour away in Philadelphia, but I have to say I didn't feel we really had any support at that time. To some extent that has changed, but our family is complicated, and this has been a journey for all of us. Some are more on board than others. Some remain totally clueless and are either uninvolved or choose to judge us without any real knowlege of autism and what this means for our family.

It's not a death sentence......

Those are the words I kept saying to myself as I came to grips with the diagnosis, and to others as I broke the news to them. In a way I was trying to tell myself it wasn't so bad, it was "only" PDD-NOS, not full-blown autism, and that she was going to be just fine. I also felt I had to downplay it with my inlaws, who also kept insisting she was going to be just fine. Some even thought the doctor was just plain wrong. At that time, it just wasn't an option to pour out my heart and reveal my fears and feelings of despair.

But there was more to it than that. At that time I didn't have the words to express to anyone, even myself, but I just wasn't going to accept autism. It was not going to define my daughter's life. I was going to get my baby back. I would stop at absolutely nothing. And that is where we are today. Neurodiversity people, be warned! I'm another one of those mothers you just hate. My little girl was NOT meant to have autism. It does NOT define who she is, and it is NOT going to be her life and her future.

It's not about accepting my daughter for who she is. I actually love my daughter for who she is, an adorable, sweet, caring, empathetic little girl. I love her imagination, her creativity, and her sense of humor. Autism is not who she is. Autism is what she has, a medical condition that has brought her incredible physical pain, daily struggles, frustration, and isolation. It has made her the object of disdain and rejection. You neurodiversity people think autism is so wonderful? Glad you're enjoying it. For my daughter, it just plain sucks! Keep your autism if you love it so much, but my daughter would gladly leave hers behind, and she has told me so herself.

Earlier this year we got an "upgrade" in diagnosis. The psychologist who did a neuropsychological evaluation felt that high-functioning autism was a more appropriate diagnosis. I agree with that. But I don't think the earlier diagnosis was incorrect. It was most certainly accurate at the time. Becca has made tremendous progress. We still have a LONG way to go. And by the way, high-functioning autism is no walk in the park. Becca struggles. We struggle. Because she has some language skills and cognitive strengths, much is expected of her. People don't understand her difficulties with comprehension or her inability to always control her behavior. Any autism spectrum disorder is life-changing and significant. But I believe with all my heart that full recovery is very possible. A very well-known and respected behavior therapist recently came to our home to do an FBA. She said when she first spoke with Becca she would have thought Becca had Asperger's Syndrome. But within just a few minutes Becca's language deficits became very apparent. So there is much work to be done. We've made a lot of changes this year. Becca is now educated at home through a cyber charter school. She gets far more services than she did while in public school, and the services are more intense and of better quality. We have changed her diet and are pursuing a different direction through biomedical approaches. I feel more hopeful than ever. I envision Becca someday telling me what it was like back when she "had" autism. I see it happening. Autism is not going to have my little girl forever.

Before autism