I made this video today, based on actual conversations over the years.
Archive for the ‘personal’ Category
Posted in commentary, disabilities, education, family, Film, Humor, kids, Parenting, personal, tagged advocacy, autism, children, kids, Parenting, PDD-NOS, ted, video on December 1, 2010| Leave a Comment »
My son started Camp Bee A Friend this week. This camp pairs off children on the autism spectrum with their typically developing peers, sharing the camp experience together. It’s not about therapy, academics, things like that, it is camp. Real camp with camp activities. Fishing and swimming and crafts and lunch and songs and games and sports and all the typical day camp stuff — something that kids on the spectrum, particularly ones like mine, don’t really get to experience.
Now, one of my fears with Ted is that he’d be alone when we were gone. That the only people who would be with him would be obligated to. Family members, and people who work with him. Maybe a roommate in an apartment or group home. It’s one of the things that makes me sad, the thought my son may never have a partner, a family, a social life. He’s still non verbal, and he doesn’t really notice other people a lot. He doesn’t interact, usually. And since there are a lot of things he doesn’t understand, what could he bring to the table, friendship-wise? This breaks my heart on a regular basis. I try not to think about it, because it makes me want to die inside.
Well, when he got on the bus to go to camp, another kid came by. He looked at the open doors, looked over the seats, and said, “I want to sit next to Ted!” I smiled, I made a pleasant remark to one of the staff members standing there (as well as continued to discuss how Ted doesn’t eat lunch) and left.
And then proceeded to cry the entire drive home.
Does it sound wrong for a mom to want her child to be ill?
If he was sick, then there would be a reason for what’s going on now. The crying, the screaming, the agitation, the misery, the sheer hopeless attitude he has right now.
If he isn’t sick, then it’s that random autism who knows what the hell is wrong now, and then it is back to specialists again. Psychiatrists and psychologists and developmental pediatricians and behaviorists and neurologists and it just goes to “I guess it’s the autism”. Which isn’t much of an answer at all, it might as well be, “I guess it’s because the sun is hot and water is wet and it is Sunday.”
So I hope he has a bug. Nothing bad, just maybe an upset stomach or stuffed nose or sore throat or something that will go away, and he’ll be back to his usual happy self again. Of course, since he is ‘non verbal’, I don’t know what hurts. His head, his heart, his eyes, his nose, his throat, his tummy, his ears, who knows?
No one WANTS their child sick, of course, but in our case, it beats the alternative.
(I post this every year, if I remember. I usually do. Going back to at least 2003.)
This post is to those who may have a very hard time today.
Relationships with mothers are very complex. So today may not be a day that has you all excited like so many others.
There are people I know who have no one to call, to give flowers to, today. They could put flowers on a headstone if they live close enough, but otherwise they have their memories, their photos. If I could be some sort of universal mother and speak some special mommy language, no matter how old you are, I would love to say to your moms look how beautiful your children turned out. And I could tell you with almost 100% certainty (and not 100% because there is always the cynic in me) that they are giving you that love from wherever they are. That their influence on you has marked your life. Those of you that I know who read this, who are having a day like this, are people that I would be proud of to have my kids turn out the same. Even if you think your life is perfect. Even if you think (and not all of you do) that maybe mom wouldn’t have been happy with your life. We know that our kids aren’t always what or who we want them to be, but we do want you happy. So don’t feel that way. Mom loves you. Happy Mothers Day to your mom.
Then — oh this one is personal to me — moms of angels. I know there are some on my list who have ‘only’ angel babies. Or those who have both — but still know that in their hearts it is still hard. Having the wonderful children I have doesn’t mean I don’t love my angels. I do. They are still my children. In one book I read, they were talking about how the final incarnation before heaven/nirvana/etc. has to be a perfect life. The life of a child not born, or died young, is as ‘perfect’ as it could be. No bile, no anger, nothing to work out. Somehow that gave me comfort. I know the awful awful pain of sitting that first mother’s day afterward, hoping someone would say something, but no one saying anything. Wanting acknowledgment for your child. You ARE a mother. Don’t forget that. If no one else says so, I say so. Happy Mothers Day.
Then to those I know who don’t have physical custody of their children. This also includes people on my list who may have children they put up for adoption, not just those who don’t have custody, or share custody, or whatever. Sometimes you have to do what you have to, for the best interests of your child. And you know what? Yourself. Nothing wrong with saying that. If you are still getting your life together, then you have to take care of yourself. Its hard to take care of another life if you are still tending to yours. And some may be in custody fights now. And don’t have your kids around. But that doesn’t make you less of a mom because you didn’t win a court case. You are still a mom. That doesn’t change. Happy Mothers Day.
There are those who can never have children. Beyond the possibilities of modern medicine. Today can’t be easy. So many questions (usually just WHY), looking around at women pushing carriages and people getting flowers. I still see women who would make great parents. Even if you don’t feel adoption or foster care is not the answer, you are no less a woman because of your reproductive system, and I find in my friends like that a nurturing in other parts of their lives. Other people, art, science, life, politics! You give birth every time you create, you mother every time you hold the hand of someone who needs it held, comfort someone who needs it. Ovaries don’t make a mom. Happy Mother’s Day on behalf of the people you mother, the life you give to the world around us.
Then this one is the hardest. Those who have had abusive mothers. Difficult or absent mothers. Moms aren’t perfect, and I am not going to get on my mom soapbox and tell you HONOR THY MOTHER. Today is hard for you. But I hope you found your comfort, your love, your guidance somewhere else in your life. You are brave souls, who made your own mothers when you had nothing else. Happy mothers day to you, because you deserve the credit for picking yourselves up and making it this far in life.
You know, for every situation here, I know more than one person it suits, who reads this. But I still thought of you individually. So no, I didn’t blab private stories, because I blended them, but I didn’t forget you either, by just pulling stuff out of a hat.
There are lots of other people who deserve to have a good day today, but I felt those groups were the most neglected.
Since last year’s annual meeting with the Department of Human Services Case Management, the terminology has changed for one of the services my son gets.
In the past, he was on the “MR Waiver”. MR = Mental Retardation Waiver. In other words, it was medicaid eligibility based not on income, but on his diagnosis, and all the support services that comes with it. (They also have a Brain Injury Waiver, an Ill and Handicapped Child Waiver, and others.)
He now has the “ID Waiver” which stands for intellectual disability. This, to me, has less of a stigma. It also is more hopeful, I think. It also should open up services for those who have significant difficulties but score higher on IQ tests. Before, your child had to score low on standardized tests. This hopefully will open the door to more people who need services getting what they need.
So even the government understands the issues around using the word ‘retarded’. Now if only more people could be sensitive about it, too.
I read today about the Roman Catholic church denying First Communion to disabled, as policy, when I was looking up the story of the Roman Catholic Parish that got a judge to ban a family from attending Mass — to the point where a sheriff was waiting outside the home to arrest a family if they tried to attend.
I compared this to my own small Quaker worship group, which has been very inviting to my seven year old, non verbal child with PDD-NOS.
It makes me wonder what other policies are out there. A faith that insists that you understand the host is the body of Christ is going to be less inclined to give a child communion. In the case of the child denied, he had ‘oral defensiveness’ and could put the host in his mouth, but his father had to finish it. (My own son was unable to eat from birth — so it is a matter of medicine, not being ‘difficult’.) What would a different church do? I know of another child who is facing a possibility of being barred from his first communion for his disabilities, involving his ability to cope with large crowds. What about Bar Mitzvahs? Are those only for those who can read, memorize, perform in front of others?
As our children are out of institutions, and in our communities, our faiths need to decide what role they will ‘allow’ our children to have in their churches, temples, meetinghouses, places of worship.
Understand, though, as parents, if we feel that you are rejecting our children for their disabilities, we may very well reject you. It makes me sad to know that this is ok, and perhaps even desirable with some religions. But we’re not going away. Our children aren’t locked up any more, and we want them to be full members of our communities.
Will our religions step up to the plate? Or will they turn their backs on us.
I’m glad my group of Friends stepped up. I’m sad to read about others (primarily the Catholic Church) that said no. These people need to be members of the faith community, not just recipients of social services from them. (But then, as members of the community, they may not have much to donate, if they can’t work. However, Catholic Charities and the like DO make money off the government offering various services to the disabled.)
When it comes to communion, I can understand not taking it because you’re not in a state of grace, or whatever (I, personally will not take whereas other ‘lapsed (Roman) Catholics will), because that is a religious barrier, one that has to do with you at that moment in time. But when you are taking people who may be born with an inability to ever do it, or who for whatever reason have to stop later on, for medical reasons, then that isn’t very fair, and to me, not very loving. Does God care to what extent you can vocalize the meaning of the act to you? Or does God know your heart, and approve?
I would go so far as to say it is morally wrong to deny someone communion for those reasons, as you are taking God’s most vulnerable and denying them Him on that level. Do we, as “able bodied” adults have a responsibility to make sure that others partake in His rituals as much as possible? I think so.