Age Is Just a Number........Hopefully

Two days ago I turned 31.  At my age, the celebration is a little more low key and the day would almost go unnoticed if not for the flower shop making several visits to my office.  There is a sort of reflection that most people have on their birthday.  I usually think about what achievements I have made in 31 years, the places I have traveled, basically how my journey in life has brought me to my 31st year of life.  The past few years have also come with other thoughts too.  How long will I live?  I used to think about how I might want to age gracefully or what friends I could see myself gossiping with when I am in the nursing home. Now, I just calculate to what age I will need to live to in order to care for Aubrey for the rest of her life.  I have deep thought of what her life would be like if someone had to start completely over with her. How long would a book be if I sat down to describe every detail of what needs to be completed in a day's time, what words we use in every situation, what my vision is for her future and how I plan to achieve it.  It has taken me six years to get to the point we are at right now, how long would it take someone else to remaster her necessary care.  I know that this is the most terrifying thought for any special needs parent.  I literally feel the need to live an abnormally long life.  Of course, I have taken steps to ensure Aubrey would be seen after in the event of on unexpected accident but aside from that, I think I will have the will to see after her forever.  It's an odd thing for most people to understand. It seems like a morbid thought but I am such a planner, why wouldn't I make plans for myself when I'm 90 years old. It's just the way it works when you are a special needs mom.  When any woman learns that she is pregnant, she starts planning her child's future.  She thinks of what preschool she thinks is the best fit, what academic expectations will be set, what sports are preferred, the college wishlist, the profession that would make her the most proud, what the wedding day will be like, how many grandkids she could handle at once.  When you have a child like Aubrey, you still have those thoughts, they are just altered slightly. My preschool preferences were based on one on one availability, academic expectations are still set but require a team of 10 people to sort through them, I dream of a college that is accepting of young adult like her, I hope that she will be a brilliant doctor or scientist because I know that she sees things differently in her mind than we do, I'm not sure that there will a wedding day or grandkids so that thought stays on hold.  That's where it stops for a typical mother.  That only seems like the beginning to me though.  I feel like adults with special needs have fewer opportunities and fewer expectations than children with special needs.  I'm not saying that there aren't a lot of great programs out there for adults with needs but I think we have to change the way feel about these adults within society.  It almost seems that whatever abilities they have by age 21, that's the expectation for the rest of their lives.  How much sense does that make?  It took Aubrey 6 years to pick up a spoon and feed herself, obviously it may take her 30 years to make it through the public and higher education system and possibly 40 years to become an independent adult.  Why are we so willing to give them all of the extra tools as a child and then not follow through when they turn into an adult?  Society doesn't seem to mind throwing tax dollars into programs like "No Child Left Behind", which is amazing but why is it only children that society feels obligated to set up for success?  I know parents never give up but it seems like the system does.  That's why I might just have to live forever.  I'll want to see that she is afforded every opportunity possible in her life, that she has every available resource and that she is always loved with the deepest type love that is humanly possible.   

   

Moving Right Along

Aubrey just finished her first full week of First Grade. As usual, I cannot sing enough praises for her school. They have been completely in tune with her needs and accommodating to her adjustment at the beginning of a new year. Her teacher is new to the school and even she has just welcomed Aubrey with open arms. I know that it is hard to imagine anyone not welcoming Aubrey into their classroom but I can definitely tell you that we have it better than most. I follow several other parents blogs their children with autism and I KNOW we are extremely lucky to have the support system and open mindedness that we do. 

One person that I have not mentioned a lot in the past is Aubrey's paraprofessional. She really is Aubrey's lifeline at school. This person is with Aubrey throughout most of the day and has been since Aubrey was in preschool. She is my window to Aubrey's day and the liaison between Aubrey and everyone else at the school. She knows what makes Aubrey tick. She knows what foods she likes, what sensory activities work best, what subjects Aubrey excels in and what is a struggle. Aubrey depends on her constantly and she never gives up on Aubrey. At the end of every day, she gives me the rundown of how the day went and what emotions were expressed throughout the day - mad, sad, excited, etc. I would be so clueless without her. I really does take a special kind of person to work with special needs children. 

Aubrey is off to a great start and made a 100% on her first spelling test on Friday. I'm sure she could have aced most of the spelling test given in the elementary school though. I want to keep the momentum going and hopefully even continue being on time for school, not our strong point last year. 😊