In two weeks my oldest child turns 21. Between this milestone and my "baby" starting college this year I have decided to take a look back on the last few decades and try to decipher what I have done, bad as well as good. I know that it is quite easy for us to congratulate ourselves on a job well done. But we never actually reevaluate what we could have done differently.
What started me thinking about reevaluation and reflection was an interesting conversation I had with my oldest. The other day CM1 wanted a time machine so he could travel back in time and undo the fact that he hadn't studied as much as he thought he should have. But since a timemachine is unavailable to him he could not. He had to deal with what was and move on from there. Well I do not possess a time-machine either so instead of time travel, I have made up a list, not of events per se, but things I wish I could redo....I wish that I:
1. Would have listened to my inner self and understood that there was really something not right with my oldest instead of searching out those who supported the idea that he was just "different in a good way," that there was no disability. I lost count of the amount of times I heard that CM1 "marched to the beat of his own drummer" and thought it was cute.
2. Would have sought out several opinions even when the pediatrician kept telling me there was nothing wrong but a speech delay and that the world just didn't understand my child. The pediatrician felt that CM1 was too smart for the average nursery school. He was reading and writing (and understanding it all) by the time he was two-years-old.
3. Would have made us move to the suburbs when CM1 was starting nursery school instead of playing the ignorant game found among the snobs and the elites in the City. I should have known that there are reasons that people run to the burbs and that it should not have taken trauma (the final straw was when the public-school kindergarten teacher put CM1 in the coatroom and wouldn't let him in class) for me to grow up and realize that we were better off as a family in the country.
4. Would have found a way to financially and legally hurt those who hurt my child. I would have loved to ruin their careers, which is what they deserved. (Yes I wrote letters to the NYC district but nothing really ever came of it.) I couldn't give CM1 what he needed and go after those lowlifes, but I wish I had found a way.
5. Would have stood up to those who were nasty and obnoxious when it came to my child from the first nursery school; to even the original psychiatrist who abandoned CM1 during a crisis because I tried to hold him to his word about what he would do for my son; to the people in town who were horrible, ignorant, rude and condescending about the boys, and special education in general.
I did get a bit of satisfaction though, when the PTA called for senior dues for CM1's last year in high school. The PTA mom went into this shpiel telling me how important that year was to the children. Well this woman got an earful from me about the wonderful seniors she was so worried about; how horrible and cruel they had been to my son. The only thing she could say was "I didn't know." Sadly of course she didn't know, but then the question becomes why didn't she? At times I feel bad that I yelled at her, but in reality, this is a very small town and all the students knew who my son was and they knew how he was treated. That the parents are too blind to see that their little darlings are little-shits, well too bad.
6. Would have never listened to anyone's excuses for their behavior toward my son. When the guidance counselor in the elementary school in NYC told me that the teachers in the school are a culture unto themselves, I should have told him that they need to grow up and that so did he; that it was not OK to be mean to a child no matter what they had to deal with-if you are a teacher it is part of your job.
Did learn though from that incident latter on...there was trouble with the teachers at the middle school when CM2 was in 5th grade. The VP of the middle school tried to use that same excuse for the teachers, (culture unto themselves) but this time, I said exactly what I should have said for CM1. You know he had no answer. Because there is no answer for when adults act like entitled brats and refuse to help the children they are charged with educating.
Of course try telling that to the NYC Teacher's Union and see what happens. It was they who yelled, literally yelled like the filthy cows that they were, at me that they were entitled to their coffee breaks and not to have to deal with my son. The principal of that elementary also lied to us and told us they didn't have to keep CM1 in school since kindergarten wasn't mandated by law. Of course by the time we had a similar problem here in the burbs with the Teacher's Union (high school this time) we knew how to handle it and threatened them within an inch of their bank accounts and their 401Ks. (Understanding civil rights laws and how to apply them to your child does come in handy.)
7. Would have stopped worrying about having friends and trying to find people to talk to earlier in my life when I was dealing with the newness of this disability. I would have stopped worrying why others don't like me or want to be my friend and recognize that the loss is theirs and not mine. I would have recognized their shallowness for what it was instead of thinking that their preoccupation with clothes, shoes, vacation and household help was interesting. I would have seen it for what it was, my attempt to escape from the daily real-world worries I dealt with. Don't ever give up who you are. It will not make you happy, give you contentment, nor pride in yourself.
8. Would stop taking the blame for others stupidity and lack of class. When people were mean to the boys I would have, instead of not wanting to cause trouble in town, called them out for the lowlifes that they were/are. I generally just walked away. No the suburbs didn't solve all our problems, luckily it did solve the school problems. But the morons who were nasty and elitist in the City seemed to follow us out here to the country.
This included the town rec-administrator who thought it was OK for a counselor to be mean to CM2 when he was 4 years old and having trouble adjusting to nursery-school-town-day camp. Luckily we were able to withdraw CM 2 and put him in private camp. That particular administrator was gone the next year too, but it always leaves me wondering where all these useless disturbed horrible people go and how many more children they abuse before they are done and retired.
9. Would have been more forceful in demanding that the bullies who picked on CM1 be held to account. That means demanding that the school call the bullies parents and have the school threaten them and their children within an inch of their futures. (Now when it came to CM2, for those relatively few incidents, the schools did call the parents. Either the rules changed or maybe I did for I did ask about the bullies parents and whether they were called.)
But the truth is that the administration in the middle school was awash in political correctness and not wanting to make waves in the community. Then when it came to high school, the original administration tried to blame everything on my aspergean son (CM1) instead of on the culprits, including a classically autistic boy who somehow didn't know not to hit my son but could drive himself back and forth to school. Did lodge a formal complaint however, and those members of the administration were replaced. Of course I doubt it was just because of my problems with them.
Remember if the administration is being a jerk to you, you can bet they are like that with everyone. I would have remembered that a person's personality doesn't change just because they are dealing with you. If they are obnoxious and a phoney with you then they are obnoxious and phonies with everyone.
10. Would have done better financially. I would have figured out a better way to handle our money and not be caught flat footed when the economy collapsed. I would not be blindsided and foolish enough to think that the economy can run on unrealistic achievement and is a never ending money pit. I would prepare for that rainy day as if it were going to be a monsoon. (Which in a way it already was).
It is so important to be financially forward thinking when dealing with special needs children. You need to recognize that you will NOT be able to have it all, but you may be able to help your child the best that you can. It is a GREAT fault of mine that I thought we could find a way around the financial realities of parenting special needs children. It is a foolishness that I am working on rectifying. It will take a huge effort on our part to fix the financial stew we have found ourselves in (and honestly one of our own making in many ways), but we are going to do our best while still providing the boys with everything they presently need.
The reality of the situation is that with everything that still makes me angry, it is less about those who were mean and more about my own inability to deal with the situation. I am more upset about what I perceive as my own failings when I didn't do the job I should have on behalf of my children. I suppose I put too much emphasis on the kindness of others and was always caught unawares by just how cruel others could be even when dealing with disabled children. Unfortunately I was so taken aback at times by others inhumanity, that I did not have the skills to help my children the way they should have been helped.
But with each experience I learned and I garnered knowledge on what to do and how to handle the meanies. I learned to plan for every eventuality and hope that I never had to embrace my inner bitch. Throughout the decades that we have experienced and learned and fought and cried I came to understand several things about people, as if these weren't apparent at the outset:
- People are selfish and venal creatures. If you come across a truly giving person you are lucky. (We did hit the jackpot for the most part in our district. For every poor experience in the school system, we were ten fold lucky with positive teachers and as far as CM2 is concerned that even translated into overwhelmingly kind peers.)
- Never take anyone else's word about what the story is concerning your child. Investigate learn what is truly happening with your child, understand and explore.
- Know the law, the law is your child's lifeblood.
- If you want something for your child ask, if you don't ask they don't necessarily get.
- Don't take anything for granted, not the school, not the law, not your doctors advice and not your finances. Secure everything. Stay on top of everything.
But above all, be BRAVE. That is the thing I regret the most. I regret that I was not a whole lot braver a whole lot earlier. I regret that it took me into my forties to learn how to fight dirty, when needed, on behalf of my children.
I do have to say though, I must have taught the boys how to stand up for themselves. The other day we were in a parking lot and a young mother with several little ones were crossing the parking lot just as I was puling out of my parking-space. I did not see her or her children. You know it happens. It's why when you are in a parking-lot, especially with younglings, you pay attention to what is happening around you and quite frankly you hold their hands as well. Now this brilliant mother also for some reason did not think to stop walking when she saw my car moving. What she did think to do is yell at me.
I again went into my mode of well, you never know who the idiot is so I apologized. I also figured she probably scared herself silly and needed to blame someone else for not watching her children in a parking lot, afterall it must have been the nannies day off. (You have no idea how entitled so many young people are in this town. It is amazing just how hard it is to raise their own offspring for some people.) But this moron did not stop yelling when I said I was sorry, "that I didn't see her or her children," she continued being nasty. "Well you should be, " she responded (classless cow). Then CM1 piped in from the back seat:
"She said she didn't see you and your children... and she said she was sorry..."
At that point I just rolled up my window and pulled away. More concerned that the bitch would start in on him than anything else. That probably would have been the point where I would have ended up outside of the car and it would have gone down hill from there.
I turned to CM1 and thanked him for defending me. I also told him, sometimes you can't fix stupid and sometimes it wasn't even worth trying. I am not sure if he understood my point about "stupid" but I know that he was my white knight and my hero, at that moment.
At least, I know that I did one thing right in all my years...my oldest, who was diagnosed with PDD-NOS at 5 years old, stood up for me in public against a stranger whom he realized was being an ass. I think we raised them strong. I think we raised them brave. I think we raised them able to tackle the meanies of the world. I know we raised both boys brave to the point that they know they need to deal with the world on the world's terms not theirs. Yet to see them able to stand up for themselves and those they love well, that was something I had hoped for but in the scheme of what they had to overcome and learn, I never thought of it as more than a passing fantasy. Yes CM2 was quite his brother's protector when very young, and at present they do vacillate between love and hate for each other just like typical siblings. But for all that I know I could have done better, I know that I did teach them about family, love and respect. Not bad for several decades worth of work after all I guess.
Until next time,