Love And Acceptance

One of the ideas that I had for Liam's website was to blog about our experiences in raising a special child. I haven't really gotten around to it, probably b/c I don't know what to say, don't feel I have the time, etc. But Here I am a 1:00 in the morning, recovering from surgery and fighting a fever for three days now, unable to sleep with a million thoughts running through my head. So....no time like the present.
My hope in doing so is that by opening up about what it is really like to raise a child with a severe disability I can be active in sparking change for myself, for Liam, for other families and their special children, maybe for society. My goal is to share with people who have or have not walked this road with a child an open look at what it is really like so that there is more opportunity to develop a deeper understanding of what it means to have a disability or be the caretaker of someone who is disabled.
I consider myself a fairly private person and for most of Liam's life I feel that I have hidden some of my deepest emotions and greatest moments of triumph from everyone. This leaves me feeling alone, disconnected from the world, like a ghost of a person, a shell of my former self. In doing so, I also feel like I hide Liam maybe because I'm fearful of people judging him or me, maybe because I'm just more comfortable in our little bubble. The most important principal of the Son-Rise Program is the idea of total love and acceptance. It is through love and acceptance that change can occur because this is when you feel most comfortable, open, available, rather than frustrated, stressed, pushing, disappointed. I have come to find this principal to be both the most useful and the most difficult to achieve. I think my journey in achieving total love and acceptance for Liam, all parts of him, and for myself, starts with being more honest, open, authentic. So, mostly, blogging about Liam is for myself, but I hope that it will reach others to educate, inspire, and to feel more connected to people who are different. I also hope that perhaps my words will resonate with another parent out there who may experience the same emotional whirlwind as me, in turn helping us to all feel more connected, loved and accepted.
One of my greatest challenges in being Liam's mom is feeling like I vacilate between viewing him as a "normal child" and seeing his significant deficits. In our everyday life, to me, Liam is just Liam, he's my version of "normal." He's my son, I know him so deeply and so fully, that I almost don't see his disability. Cognitively, I know that he is disabled, but I just experience him as totally normal. Then, out of the blue, I will have an experience that shatters this peaceful little place to be and sends me right to reality where I come face to face with the profoundness of his disability. This is a hard fall and it amazes me that I fall every time. For example, I'll have an occasion to spend time with another similarly aged "typical" child and I will see ALL of the things they can do - play team sports, shower themselves, do math - the list goes on and on. Liam still struggles to follow directions that involve distance (go upstairs and get your pajamas), can't converse, can't write his name or brush his teeth. Most of the time, I totally accept these things about him, I also know that in time, he will improve and be able to be more independent - just on his time frame. However, coming out of my bubble causes me panic, grief, and lots of feelings of inadequacy about the choices that I make for him. "Maybe he'd be better off if we put him in school, maybe he'd be doing better if I just tried harder, did more", and on and on and on. The total opposite of love and acceptance. I begin to push him, get agitated with him, and then feel guilty for my behavior, my feelings - it's not his fault and he doesn't need his own mother judging him.
Recently, I had just such an experience, but it was actually the worst type of fall for me. Because Liam has been homeschooled for nearly 3 years and because I got frustrated with trying to work with the school system, Liam lost his eligibility for special education. Not a big deal, he clearly qualifies, but the process of qualifying him is time consuming and less than a pleasant experience. One of the things I want most in life for Liam is for people to see him as I do (at least most of the time). A whole child, a child with a sense of humor and imagination, who is strong-willed and opinionated, who is affectionate and loving, interested in experiences and the world around him...capable. One of the biggest issues I have had with our special education system is the system's seeming inability to see children with disabilities as children first, label second. I know that there are individuals within the system that do see the child first, but as a system as a whole it just doesn't seem set up to do this. For this "evaluation" we had three "specialists" come to our home to observe Liam. Immediately after letting them in the door, all of my past frustration with the school system came flooding back and I began to regret my decision to do this. It's interesting to see three specialists who work with children fail to interact with a child as though they are a child, not a lab rat. There is no greeting, warm-up, play, make the child feel comfortable - engage the child interact with him. It was immediate observations, taking notes on clipboards, trying to "test" him to see what he can do, and commenting about him as though we weren't there. Liam on this day was playful, engaging, immediately greeted the three "ladies" saying "let's go to the playroom" as he guided them by the hand showing them the way. He was all grins and silliness, anticipating that they had come to play with him. Now I view this as awesome. This is a child who used to show absolutely no awareness if his own mother walked into a room. He never greeted people, and was pretty much content to fling string or rip paper while lying on his back staring at the overhead lights. To me he has come so far and is so open to the world - the world of people. In the report that was later written up about their observations, his behavior was viewed as "too boisterous for the occasion." The majority of the report was similar, pathological language for almost everything he did. Now, some of what they had to say was correct and true, but much of it was not yet. I felt like all of their observations of Liam were made through this lens of autism, and that is what informed their opinions about what they saw. They didn't see a child, with no preconceived ideas to guide them, able to see him as a unique individual. That, coupled with their inability to interact with him as a child, leads to inaccurate assessment that is supposed to inform perfect strangers about what his educational needs are. In our experience, most of the time, these broad generalizations have led to the wrong interventions for Liam. I actually really don't care that much about that right now because Liam is not in school and they don't direct his education. What was really hard was sitting through a meeting with several teachers and specialists, none of whom know Liam, and reading through this report that uses the most negative and pathological language to describe nearly everything about him. Sitting in that meeting I immediately felt that huge sense of regret about being there. I felt the sting of tears coming to my eyes and fought hard not to show my fragility. I felt like storming out of the room, and fought that urge too. Instead I listened to what they had to say, new better than to contradict them as this has tended to be viewed as "denial" and doesn't usually result in any meaningful change. Now, there is a part of me that felt hurt by this report because of its pathologizing nature, especially regarding the things that we see as wonderful things about Liam, but there was also part of me that was hurt because some of it was truth. There was that fall from my bubble where I come face to face with reality in a room full of strangers who don't know my child. I instantly feel the sting of how people must view him. At home, Liam is surrounded by people who know him well, love him deeply, and believe in his capability, even knowing that he is significantly disabled. They see him as a whole child and are eager to share and celebrate his successes and problem solve his challenges. In this setting, it feels protective, safe, loving, a place where Liam is loved and accepted for who he is, not what he can or can't do. When his difficulties are revealed to the world, especially when their viewed differently than how we see him, it feels like being stabbed and that fierce mama protection kicks in hard.
Now this experience hit me hard for a while. I had a hard time letting go of it and began to question my decisions for Liam. It challenged my quest to let love and acceptance be the primary guide in our efforts to help Liam develop. It made me wonder "where is Liam's community? Where does he belong? What would he say he wants if he could tell me? Are we forever going to be cloistered in our home where it is safe from judgment - from facing reality? Is that love and acceptance?" I could go on and on. These are the questions that haunt me, that challenge me, because what I want most for Liam is for him to have a place in this world - to be known, loved, accepted. How best to achieve that, or is achieve the right way to look at it?
After several days of wallowing in my self pity and fear for the future, I logged on to the Son-Rise Program groups that I am part of through facebook. There I experienced such honest love and support for parents experiencing the same thing as me. Such inspiration and dedication to these children as whole beings, to us parents fighting for them. I was moved to tears and filled once again with a sense of conviction that striving for true love and acceptance is the most important principal to live by - Liam deserves that, I deserve that, we all do. I don't know if I'm doing everything I can for him, or the right, the best, the most effective intervention - how can one really know that. Most of the time I do know that I am doing my best and that my intentions for him are true and full of passion. I do know that for him to know that he is deeply loved and accepted, even if stopped making gains, is the greatest gift I can give him and give myself as his mother. Now, if I can just hold on to that knowing.
For any of you who made it through this long post, thank you for listening.