Saturday, July 16, 2011

What is Alright?

A friend and reader of this blog (and someone who actually knows me in real life) said to me recently that she loves how positive I am in dealing with Maya's challenges.  While I was relishing the compliment and also happy that apparently my blog is perceived as positive, I also found the comment rather ironic as I am not by nature the most sunshiney, positive person.  I am a cynic by nature and nurture and I am a person who can easily set up camp in the negative.  So in some way it is funny for me to hear from others that they see me as a positive force when I am sharing my experiences raising Maya and in dealing with autism.  I do think a lot of that has to do with that although I can be dark, taking a dark approach to Maya and her issues will not do anything to help her.  Believe me I can wallow in the negative plenty, but perhaps I don't always share that so easily in this blog.

I am not sure why that is.  I am not a person who shares so easily with others although I think a lot of people don't always realize that, because one, I am a loud and pretty gregarious person most of the time.  I think sometimes I should have been an actress because projecting from the diagram is my normal tone of voice.  I cannot count the bajillion number of times someone has told me to talk softer (and sometimes I appreciate the warning and at other times it bugs the shit out of me, so choose your moments carefully people) .  And I am someone who usually has a lot to say on most topics and I am often very direct in my approach.  Therefore I think people often see me as a totally open book that holds nothing back, but although I am not a still water, I still run deep.

I have mentioned many times in this blog that I don't think too much in the future when it comes to Maya.  It's hard to and it is heartbreaking to and most of all I feel like we don't need all those fears and doubts and insecurities swarming around us all the time, focusing on the here and now is better.  Like I said before I am not the sunniest person and I am always afraid of opening that door too far, that the fear, the unknown, the doubts will just bowl me over and how can I help Maya then?  There are times when bottling things up is a good thing.   I kind of look at all those autism fears and fears for Maya's future like they are in a balloon which is not tied and I am holding the air by pinching the balloon with my finger and my thumb, a little air comes out once in a while, when I jerk or move my hand, but it is a slow leak, I can handle that when it happens.  I just pinch tighter and eventually that air will stay inside.  If I let it go then all the air comes out at once, it makes a ridiculous noise and the balloon goes flying out of control and usually to a place where I can't find it.   This approach works better for us.  It keeps me focused on helping Maya each and every day, on building her confidence, on managing all the pressures.

Once in a while though..........

A few weeks ago as I mentioned earlier in another post we met with Maya's teacher to set her goals for next year.  Things are going well at her new school and we are grateful for that.  Maya is progressing, she is maturing and this environment just speaks to her in some way that other environments haven't.  Yesterday even for the first time Maya took out her writing workbook and even did 2 exercises out of it with me.  That's another first for her as she usually hides completely her academic pursuits (funny to call drawing straight and squiggly lines to practice writing an academic pursuit).  I was very proud of her both to see that her writing is slowly improving, her lines don't look so much like someone with hand tremors drew them and I can see her concentration is growing a lot.

But then......

I asked Maya's teacher Cecile about her views, as a professional with over 20 years experience dealing with special needs kids, what she thought about Maya's possibilities for the future.  And as I mentioned Cecile was very honest and open toward us and I do appreciate that.  Up until now we have just gotten shoulder shrugs in one form or another when we ask about this.  Cecile said that she sees Maya has a lot of possibilities to develop herself and that she will likely be able to do some kind of training which will allow her to work.  And her words are just sticking with me and I can't let them go.

When she is older we will see what interests her and what she has aptitude for and try to steer her in that type of direction for learning a skill.  For instance if she likes plants or animals she could work in that area when she is older, or if she likes shopping or stores she could learn how to work some place like Albert Heijn (note: Albert Heijn is the largest chain of grocery stores in the Netherlands, they are owned by the same company that owns the Giant and Stop and Shop chains in the US).

Balloon gone.

I just don't know how I am supposed to wrap my mind around this, how Maya growing up and working in a grocery store can make me feel like this is a successful outcome.  I have nothing against working in grocery stores, it's good, honest work but of course that is not what I dreamed of for my child.  Like most parents I dreamed of achievement, honors, graduations and of a child that would exceed her parents.

Cecile told us of course that we don't exactly know what Maya is capable of so of course she doesn't know what will happen.  Maybe Maya will be able to do more but based on her experience she sees kids like Maya a lot and feels that they need to work in a situation where there can be a lot of supervision and guidance and that kids like Maya, who have a hard time dealing with pressure, grow into adults that have a hard time dealing with pressure and that the rigors of balancing a demanding work environment and taking care of a house may be in fact too much for her.  That she will likely need live in an environment where there is supervision and help for her in organizing the stuff of life.  She doesn't think that Maya will be able to handle working, paying bills, that clothes are washed.

Maybe Leo and I have just been kidding ourselves in how we see our daughter?  I know she has her problems and that those problems will always be there.  But Maya is developing, progressing and maturing and I think Leo and I have allowed ourselves to be comforted by telling ourselves that Maya just needs more time and space than other kids but that in the end she will be she will get there, that she will be alright.  Alright for us means that she will, maybe with some extra help or assistance, but that she will finish school and be on a level with her peers and be able as an adult to develop herself in such a way that she will be able to provide for herself, have possibilities and live her life as an independent adult.  

I read so many inspiring stories of parents who fought for their kids and although they struggled, they just "knew" their kid was capable of more.  I have always believed my daughter fell into that category, the 
capable-of-more category but maybe I need to believe that more than that being is where she actually is. I do accept Maya for where she is, but will I be able to accept it if in the end everything does not turn out according to our definition of "alright."  I judge the here and now based on whether Maya is happy, healthy and making progress, no matter how small.  Her IQ is in the mildly mentally impaired range.  Maybe what Leo and I need to do is adjust our definition of what alright means. Or do I need to keep believing, keep fighting and keep hoping that somewhere along the way all the cards fall into place?  Maybe Leo and I are just lazy, we are accepting where she is now instead of waging war to get her into a school/program with higher goals.  Maybe we are just thinking about ourselves too much in this, waging war takes time, energy and resources, we are a two income family because that is a necessity for us.  At night we enjoy our daughter and like our nice little life.  Maybe we should be fighting for more?  Maybe we accept where Maya is because not accepting it would mean risking our little balance.  Maybe, maybe, maybe.  

And then the guilt comes for not having another child because I fear what will happen to Maya when Leo and I are no longer here.  If she cannot handle living on her own, who will look after her?  Leo and I intended to have other children, it just didn't work out that way.  I was already 38 when I had Maya, parenting was difficult for both of us and it took a long time to feel ready to have another child, but when that time came I felt I was too old to have another baby.  Our family as it was worked for us and then we started realizing that Maya had problems and then for a while I was very grateful that we didn't have another child, that we could devote ourselves to Maya completely.  For ourselves, I don't regret not having another child.  I didn't think I would have any children and Maya was and is a total gift.  She is enough for me.  Call me selfish but after she was diagnosed I was grateful not to have another child to take care of.   But when I think of her growing up and not being able to live on her own and take care of her own life, maybe having a brother or a sister would have given some peace of mind?  

I don't have answers to any of these questions, we don't know what the future will bring and when I allow myself to take my hand off that balloon and let the air out, this is what happens and then the tears flow and they are hard to stop.  I don't know how to do more than what I am doing.  I am loving my daughter, she is in an educational environment right now which is appropriate for her needs.  

I do think Leo and I need to really reevaluate what alright means.  That is not something which will happen over the course of a day or a week or a month, it is evolution.  So for now, I am blowing that balloon back up again, because the air inside are not things I have answers for and I know letting the air out makes the tears flow, makes everything seem impossible and overwhelming and pretty soon I am drowning.  How is a drowning mom good for Maya?    

We need that balloon.  


  1. That was a tough post to read, and I'm sure even tougher to write. Maybe just see your goal as having a Maya who feels good about herself. So few people really do feel good about themselves for many years, sometimes for their entire lives.

    Maya has great parents who are loving, encouraging and accepting. The rest of the world may not be as encouraging and accepting so it's your job to ensure that she's strong enough to take it. The best way to do that, in my opinion, is just keep on doing what you're doing. The more stability and acceptance, the better she will feel about herself.

    In the end, would you prefer an anorexic, self hating beauty queen with drug issues, or your dear Maya, who feels good about what she accomplishes and finds happiness in life?

  2. No of course I would not rather have a child with self esteem problems to the point it causes her to make bad choices. I think what i am trying to say is that I can accept Maya and her limitations now when she is a child but I think as she gets older they may be harder for me to accept because I think on some level I still have this picture of her being "normal" and how hard it is to adjust the picture.

  3. Don't adjust the picture. Keep the balloon blown up. Only you and Leo know and will continue to know Maya best and what she is capable of. Remember Temple Grandin's mom was told she could do alot less than she does. We always want people to tell us what the future will bring but they don't know for sure so it's not a fair question. I'm guilty of asking this question too. But, with all the love, support and acceptance, I'm willing to bet Maya will accomplish more than anyone is willing to predict. Keep your hopes and dreams alive!!! If you give up so will she. If you think she cannot accomplish more she will not but if you think she can, she will. Keep being positive!!! Your friend :)

  4. You're a good mother, Dana.


  5. Thanks Kristen, I know that but it is good to hear.

  6. I don't ask people what the future holds b/c I definitely don't want an answer like that. I don't think anyone can really know, regardless of how long they have been working with kids. Plus, back in the day kids like ours just weren't pushed. People were content on them achieving whatever little they did, and they didn't have the support or therapy available now. Aiming high is always better than aiming low.

  7. "I don't know how to do more than what I am doing. I am loving my daughter, she is in an educational environment right now which is appropriate for her needs."

    There, you said it. That is ALL you can do right now, and it is a lot.

    You had dreams for how your daughter would be and what she would be able to achieve in her life, and you're beginning to face the reality that maybe those dreams won't come true. (But then again, maybe they will - I don't think you should let go completely.)

    Allow yourself these mourning periods, but remind yourself of what the REAL job of a parent is - to produce a healthy, happy, self-sufficient adult. I say keep working in that direction by doing EXACTLY what you're doing, and who knows what Maya will be capable of?

    Don't let one teacher's opinion completely deflate your balloon.