Lennon equates nighttime sleep with a daytime nap, which can indicate some inability to differentiate timeframe. He clearly understands day from night (light and dark) but how many minutes or hours something is kind of eludes him. This is ok because the things he says that are so Lennon make me smile and appreciate the struggles we have been through and the happiness we are faced with.
The days become easier though the worries are always there. It has been at times incomprehensible to me that at one time we had to worry about what he eats because the wrong amount of protein could have taken him away in so many ways and the next all we simply worry about is infection or rejection.
Again those are two things that could take him away but we are diligent in paying attention, calling the doctors and keeping everyone informed. We notify them when things don’t seem right. It is what we do the worries and stress have changed (some), but I am learning to relax more and allow myself to daydream and dabble in the creativity that I call “Three Times Chaos“.
However, these past days I found myself reflecting on the experiences, on the emotional roller coaster, the physical wear & tear, the strain on our family and the strength that we individually and as a family unit exuberate. It goes without saying almost that I admire each and every person in my immediate family.
My other children who never indicated jealousy, who were at all times genuinely concerned not only about Lennon but for me. They not only managed to keep the house from burning down, keeping the dogs alive but maintain and/or improve their grades and maintain the house to the best of their abilities.
These children I speak of are 11, 12 and now 17. With many parental frustrations as our life has turned (semi) normal, I am in awe of them. It is an amazing feeling to know that your children can live without you when the time comes, though has a parent you hope they always stay close and they may always need you in some capacity.
Yesterday, Lennon’s siblings started back to school and Lennon seems quite disappointed. He loves school, he loves to play with his friends, sing songs and have circle time. I feel sad for him but I do not feel guilty for keeping him at home.
There are lots of worries when immune-suppressed children are in a less than sterile environment aka home to going to an environment that carries who knows how many germs, it is a risk not worth taking at this time.
In addition to that Lennon does have a tube that sticks out about 12 inches from his belly and that lil boys and girls love to run around, climb on things and have fun…again there is so much risk I am not willing to take nor consider the possibilities. He will receive educational services, at home, he just doesn’t have anyone else to play with.
I wonder if he gets lonely, I wonder because he doesn’t say he is, perhaps he doesn’t know the words? He does tell me occasionally that he’s bored and there is nothing to do, a prime example of copying his siblings I would think. But then Lennon has never truly learned how to play, it is something he is just now learning to do, so perhaps the morning hours when everyone else is in school and I am doing schoolwork or creativity things, it is now time for Lennon to attempt to develop further, to attempt to “catch up” to other 6-year-old little boys.
Sometimes I am challenged to recognize that he is 6 years old physically but that he is not there emotionally or maturity-wise, and at this time we don’t know if he will ever catch up developmentally. Working with intellectual disabled (with my current job) trust me when I say, I am okay with this.
If Lennon is intellectually disabled there are still so many opportunities that allow him to live a happy, fulfilled and successful live ~ which is what a mother wants for her children, well at least I do. To experience sometimes what the PWS (people we support) experience in differentiation, discrimination, and judgment hurts my heart for humanity. Lennon has many capabilities, lots of things he can do and those are the strength we focus on.
Lennon has been trying to use the bathroom more ~ on some days with more success than others. He has mastered (sometimes needs reminders) to use the bathroom when he first gets up, but during the day he is missing the interest or the internal message that says: Go to the bathroom.
We will take small successful steps into potty training and even if this means he gets his smarties candy (his reward) at 6 or 7 in the morning. He fully knows that the smarties are reserved for going to the bathroom (it’s his favorite candy!).
This post has been a few days overdue and while parts are not related to Lennon, they are related to Lennon. There are many things I often feel, think and even analyze that I do not share, that I think I need to share.
But then again, the blog is not intended to strip me naked in my emotions, it is to open the window to our lives with a special needs child and the struggles we endure. It is intended to educate, to give information to other families with similar experiences so that we all may remember that we are not alone.