Yesterday we received a copy of Maya's "file"from her current school. They sent us a copy because they wanted us to know what they have sent on to what will hopefully turn out to be Maya's new school, pft, pft.
So last night I read all the reports, from teachers, from her group mentors, the results of her pyschological and psychiatric evaluations, study plans, treatment plans, etc.
When you have a child with special needs, all this reading material is par for the course. In some way these reports can often be an insight into your child. You often get a lot more details and little snippets which are not always shared since face to face meetings involve limited time and decision making.
Still reading things over and over like.....
....Maya gives a chaotic impression.....
....Maya is often difficult to understand.....
....Maya lives in her own fantasy world....
....Maya's fine motor skills are not age appropriate.......
....Maya comes across as a very young, immature girl.....
....Maya's manner of play is not age adequate......
....Maya's concentration for school work is not sufficient.......
....Maya doesn't have an appropriate understanding of what goes on around her......
is always hard to see over and over. Of course, as a parent, you know your child. You know all these things yourself, you see them every day, you recognize it completely. Still something about seeing it on paper over and over again is enough to make me want to go into bed and pull the covers over my head. What is it they say about the power of the printed word?
Maya has problems, we know that, we accept it and Leo and I just do the best we can to help her within our abilities. I know certainly that there are some things we could do better. I often think if Leo and I were more structured at home this could really help her, but it is not who we are and mostly our focus is that Maya's life at home should be a happy and peaceful one. We don't always score 100% on those meters either because like anyone else we have good days and bad days. There are days when Leo or I (or both of us) lose our patience with Maya or when we just want to sit down and read a book or watch tv and not think about autism or about every little thing, from the way we get up in the morning, eat meals, talk, think, walk, manage routines, play, socialize all feeds into Maya's development.
I know parents who eat, sleep and breathe their children and autism and this approach works for them and I am sure it has a huge impact on their kids and helps them. I also read a lot on forums and see the opposite approach, where parents just don't understand their kids or what is really happening with them and don't have the support they need.
Leo and I, without meaning to try to walk a line between trying to help her but also just trying to live our lives. It reminds me of something I read once that someone may have autism, but that autism doesn't have them. For us that rings really true. Yes, Maya is autistic and has very real problems. We don't know the full extent of her abilities or what effect her autism and cognitive challenges will have on her as an adult. That is scary stuff which worries me and keeps me up at night. But as I have said many times, we try not to focus too much on the big picture because it is unknown. We try to take each day as it comes and help her every day, not just with her problems, but we really focus on trying to help her to live a joyful life. Regardless of what she is or isn't, or what she can and can't do it is important for her to enjoy her life whatever it is and whatever it may be. Leo and I do try and create an environment for her where she will feel safe but also happy. It's not so hard because Maya is, in her essence a joyful soul. She will always choose happiness. She gets lots of attention, so she often doesn't have to resort to being sad or gloomy to get attention which I often did as a child for attention because I didn't think I could get it just by being me.
I, of course don't know what effect this "strategy" will have on her as an adult, in the end, maybe we will feel we should have focused more on a routine and an endless addressing of her problems but I can only draw on my own life experience (and Leo on his). We want Maya's life to be more than just a tallying up of her problems and lists of what she can and can't do. We want her to be happy and later in life, to choose happiness. This doesn't mean she won't have sorrow or challenges in her life, because we all do, but if she is someone who values happiness over sadness we feel that this will help her in droves as an adult because she will naturally, in her core, not only seek out happiness, but will make the choice for happiness. Part of being able to cope with sorrow and challenges in life is making the choice to take it in stride and be happy and not beat yourself up. Happiness is more than a feeling, it is a choice (as are many other choices which are attributed to emotions like forgiveness, anger, sorrow). Of course there is sadness in everyone's life and some people, to put it mildly get more than their share of unhappiness, challenges and truly horrible shit in their lives. But we mostly choose the lives we have, sometimes without realizing it.
But I must say that the person who has influenced me the most in this was my paternal grandmother, who we called Meme (Mehmay). She was a constant presence in our lives. I grew up living near my dad's family which was pretty small. My grandparents, my dad's sister and her family and us. We were a close family, well at least until I was in my twenties (for more information on that read this if you dare.). But I had a special relationship with my grandmother (perhaps my brothers and cousins feel the same). I was the youngest grandchild and only one of two granddaughters and Meme doted on us. I can remember spending many-a-Saturday with Meme and my cousin Alison. Our grandfather, who we called Pepe (Pehpay) would drive us the half an hour and drop us off into downtown Pittsburgh on his way to play bridge or backgammon in the city and she would take us shopping at the big department stores. This was back in the days before Target and Walmart, when department stores were shopping centers in themselves with 15+ floors and where women could spend a leisurely day shopping and lunching with the ladies. We loved going to the perfume and make up counter with her and she always bought us clothes or small (but distinguished) toys. She bought us our first gold rings and later birthstone rings. The afternoons would wind up with us taking the bus home which was always a treat. I also spent many nights sleeping at their house, preferring being with them then often being in my own house. My parents were self-involved and distant (but typical for the period), I didn't have a lot of friends. And in their house there were equal doses of freedom, calm and fun.
Although my childhood was messy and I had my share of difficult things to deal with, I have been very fortunate in my life to have a lot of wonderful people who truly cared for me and adored me (I hope one day to write about all of my touchstones, I love them all dearly). Growing up with parents who did love me, but were, simply speaking, too self-involved and beat down by life to get beyond their own stuff to give their children what they needed, Meme (and Pepe) were often the life raft that I clung onto to keep my head above water. And my relationship with Meme was probably the one most altruistic (on her part), kind, caring, loving relationship I had as a child. She was stability in a sometimes confusing world. Always kind, always opening her arms and heart to me, showering me with kindness, love and most of all acceptance.
As a girl I once asked her why it was that we called her and my grandfather Meme and Pepe instead of Grandma and Grandpa. She first shrugged off the question telling me that Meme and Pepe was French and therefore a throwback to their former pre-American life. I then challenged her telling the French words for grandma and grandpa were grandmere and grandpere. Finally (and probably sick of my questions), she said, "anyone can have a Grandma, only you have a Meme."
Truer words were never spoken.
Meme had an unqualified, extremely difficult life. But despite surviving under horrible, fearful, circumstances, suffering the loss of her entire family during the second world war and dealing with survivor's guilt the rest of her life, Meme was the most joyful person I have or probably ever will know. Quiet strength through joy is how I think of her. When I was growing up the sitcom, "All in the Family" was a staple in our house. We gathered around the TV (either at home or at Meme's where I often slept on Saturday nights) and marveled in the world of Archie Bunker. I didn't fully understand the subtext of the show as a young girl, but I loved the way it caused belly laughs out of my mother and father, and while my grandparents laughs were quieter and more controlled, I think what I loved about the show was how it brought 30 minutes of unabashed laughter into our lives. As I got older and truly understood the greatness of that show, what still drew me to it, as much as the fantastic acting, the superb writing and the reflection of American society in that period, was the happiness that show brought into our lives. For 30 minutes a week my family got themselves out of their own heads and gave themselves over to Archie, Edith, Mike and Gloria.
As a girl I always saw a lot of symmetry between Edith Bunker and Meme. They actually had a lot in common. Meme could talk your ear off. As much as I loved her she could sometimes make me crazy with all her talking, although this experience did teach me how to tune out of things, which I must say is a skill which has served me well in my adult life. Meme, like Edith Bunker was always happy and always saw the good in people. And Meme had the same type of quiet strength that Jean Stapleton brought out in Edith Bunker. Meme never had to show the world that she had an influence on Pepe or what went on in our family but it was there. Meme was willing to let the world see that Pepe was in charge, he was the decision maker (in a lot of things he was) but it certainly wasn't a power vacuum. Meme wielded her own quiet strength. My Pepe was a very intelligent, if not brilliant, man, strategic, calculating when necessary but often it was Meme he sought out for counsel and advice especially in family matters. Theirs was in some ways (I think) an awkward partnership. I don't know how much love and affection there was in their marriage (and to be honest I don't mind not knowing this, it was their marriage and totally okay with me that they are the only ones that will ever know that) but whatever it was it worked. We grandchildren went to Meme for love, food (which is love too), affection, unconditional acceptance, caring and kindness and went to Pepe for counsel, advice and to talk Politics. I can't speak for my brothers or cousins but for me it was a totally fulfilling formula. It took me a long time to realize that there were people out there who didn't have grandparents like this, who were larger than life.
Meme was always happy. Well, okay not always, she had definite sorrow, although she dealt with that privately and it didn't own her. There was never once when I talked to her on the phone that she wouldn't ask me to come over and visit her and when I did, I was the center of everything. As a kid, with parents who could be on a spectrum going from silent and emotionally distant to raging, it was so great to go to their house and have Meme, someone who not only doted on me (made what I wanted to eat, did what I wanted to do) but who was just not shy about showing me and telling me how happy she was to have me around. Meme sang French songs to us and played games with us. She taught me how to play and enjoy solitaire and some of my best moments with her were in summer when we sat on her big back porch, gliding together on the glider talking about the houses on the hill or making up stories about the families that walked down the small road next to her house to the bottom of the hill to go to the swimming pool while we moved back and forth on her glider just watching the world go by.
Meme didn't talk a lot about her childhood or her own family but I often would beg her to look at her family photos in her old photo albums (which she lovingly carried with her through the second world war) and she would tell me about her brothers and sisters, her piano teacher and her mother and father. She would tell me that one her nieces reminded her of me and how much my dad and my cousin Greg reminded her of her own father. I used to beg her to tell me those stories over and over, and even though sometimes her voice got choked up when she did, she always obliged me. I used to love looking at photos of my dad and aunt as babies and young children before the war broke out, seeing them in sweaters which were knitted by Meme herself. They had a series of photos taken once when they went to Paris, before the war. Meme, Pepe, my dad and aunt at the Eiffel Tower, Meme and Pepe walking through the streets of Paris. Dad and my aunt playing with the toy cars in the park near the Eiffel Tower. It means so much to me when we have been in Paris with Maya and I take her to that same park and she enjoys herself there with wild abandon. Those cars are still there and every time I am there, I feel this strange connection to them, even though it is a place I had never been with them, they are there with me.
I must say that I was not always as kind to Meme as she was to me. I was sometimes an angry kid and often took it out on Meme, yelling at her when she didn't deserve it. Losing patience with her constant talking or when she thought differently than me. I did feel fortunate though that right after my grandfather died I was able to talk to her about it and tell her how sorry I was. She put her hand over mine and said something like that it didn't matter, she understood why and it never hurt her because she knew me, she knew what was deep inside of me and it wasn't all that impatience and anger, it was a good, kind girl and I just needed to push that anger out first so that the rest could come out.
And in many ways Meme was my protector. She was always a port in the storm and always there. Even later when she got Alzheimers, she was there for me. Pepe died in 1987 and Meme died in 2001. When Pepe died I slept at her house for most of that first week as I didn't want her to be alone, my dad also wanted me to but I also just wanted to be near her in such a sad time. Even though she had lost her husband and was not herself, just being near her, in her house close to Pepe and his things was comforting. Anyway one evening neither of us could sleep so Meme suggested we eat something (a Jewish mother even in grief) and off to the kitchen we went. Meme offered to make me toast (a standby in her house) but I made it for her (the first time she ever let me do something for her). We started to talk about Pepe and about the last few weeks of his life. I was living at the time in Tampa, Florida and I had seen Pepe maybe 6 weeks before and although he was getting older he seemed fine. In this conversation, I, the ever insecure girl, was looking for reassurance that Pepe did love me (even though I knew). So I asked her and she of course told me that he loved us all and that we meant everything to him. I cried then and told her that I felt like I had disappointed him because I had dropped out of college. She told me he was sad that I dropped out but knew I would be okay and that I never disappointed him. She told me that of all the grandchildren, I had had the hardest time, because of my parents' divorce and because of how they were and that Pepe felt I had the most to overcome but he knew I would do it. Meme told me in the last two weeks or so before he died he was acting a bit differently and about a week before he came to her in the night and talked with her for a long time. He told her that he felt that he was going to die soon. He told her that she shouldn't worry, that their financial position was okay and that she didn't have to worry about money, he told her to stay in the house as long as she could and not to sell the car. That even though she didn't drive, having the car would give her independence because she could always find someone to drive her if necessary. He also asked her to look out for me until I found my way in life. He knew I was lost but he also knew how hard of a fighter I was and that it might take some more time, but that I would find my way. He made her promise to look out for me until then.
I met Leo in May of 2001, just a few weeks before Meme died. Meme had been in a nursing home for many years already, totally engulfed in Alzheimers, it had been a long time since she had recognized anyone in our family. My dad was waging his decade+ war against my aunt (I sometimes think Meme allowed herself into this state of nonrecognition because she couldn't watch what was happening in her own family, other times I think the Alzheimers was a blessing because it would have completely broken her). I would visit her when I came home from Israel but that was once a year at most. I would sit with her and hold her hand for as long as I could stand to see her that way. Funny enough, even neck deep in Alzheimers, no longer able to walk for herself or feed herself, she still held my hand the same way she did a quarter century before walking down the street in Pittsburgh, her thumb gently stroking the top of my hand in a constant back and forth motion, quite similar to the rhythm of the glider on her porch.
Meeting Leo was a whirlwind to say the least. We met in Israel when he was on vacation and by the end of the two weeks I knew he was it for me. We made plans for me to visit him in Amsterdam a few weeks later. I was over the moon and silly, in that way you are when you are falling in love, everything beautiful and romantic and sprinkled with fairy dust. A few weeks before my dad had called me to tell me that Meme had been at the hospital and that the doctors said that her organs were starting to fail. Dad asked them to keep her out of pain and they put her on some medication and sent her back to the nursing home. They didn't know how long she had left, it could have been weeks or months, but considering her situation she had no quality of life anymore and part of me was relieved that it would finally be over for her and for us. As much as I didn't want to be without her, what made her who she was was long gone and I just wanted peace for her. Anyway 3 days after Leo went back to Holland my dad called to tell me she had died peacefully the night before. Leo comforted me by phone and I told him all about her (we barely knew each other at this stage, so he didn't know anything about her) and he listened to me for hours tell stories about her and try to capture the essence of her for him.
I told him this story about how Pepe made her promise to look out for me until I was okay. Leo is not a big talker but sometimes he has such amazing compassion and clarity, it can stun you. I was crying and told him this story and he very quietly comforted me and when I was calm enough to talk he said. Do you know what I think? I think she kept her promise to Pepe. For years she sat in that nursing home, crippled with Alzheimers perfectly healthy otherwise, day after day and year after year. At her last physical several months before she was given a clean bill of health and the doctor told my dad she could live another 5-10 years. Leo said, I think she was just waiting all this time for you to be okay so that she could go. He said, we will never know, but I think your Meme loved you enough to wait until she knew you found your way. You found your way now. She kept her promise.
Now, this was probably just a guy comforting his girlfriend, still it makes me feel good to think it was something bigger. So I have chosen to believe it. Why not?
In raising Maya, I have often thought about what Meme would do? I think about how much joy it would have given Meme to see Maya, to have been a part of her life. If I had a wish list of things I could have for Maya top of the list, even before a cure for her autism, would be for her to have Meme and Pepe in her life. So, I try every day with Maya to be for her, a small part of what Meme was for me. I try to encourage her joyfulness, to give her unconditional love and acceptance, a soft place to fall, a port in whatever storms there are or may be, to try not to make the problems everything there is so that when she is older, no matter what she can and cannot do or be, she will have some of that quiet strength and the ability to choose happiness above all else.