Saturday, November 17, 2007

Irritated Does Not Equal Stress

Surprisingly, I am not a stressed out person. I am easily excitable. I do have a tendency to “let my feelings show.” But this life I live, is all I know. My first two babies were born 15 weeks early. If you really want to try to conceptualize a 1 pound 6 ounce baby, go buy 1 pound 6 ounces of hamburger. Then, try to make a baby out of it. The boys spent 100 and 114 days in the NNICU. And, even after discharge, there were still issues. They came home at the end of November, right in the middle of cold and flu season. One good virus would have put them right back into the hospital. And, since that time 12 years ago, my life has only gotten more complicated. I don’t know “normal.”

See, I don’t think that I’m under a lot of stress. I sleep just fine every night. If I have a restless night, it means that I am getting a cold. It’s always been that way. But, I go to bed at a fairly reasonable hour and I’m out within 15-20 minutes. I wake up when the alarm goes off and I start my day. I do consume way too much coffee. According to my doctor and my blood work, I’m in excellent condition in spite of the fact that I could lose about 20 pounds.

But, I do get irritated. Especially when people assume that I must not be able to keep up or that I’m stressed out. I wouldn’t say that I get easily irritated but I get irritated at incompetence and laziness. Partly because I feel that if I can handle my load and stay on top of everything in my life, then why can’t YOU (whoever you are) stay on top of your life? I feel like I am constantly doing other people’s jobs. If I refuse to do someone's job and get irritated that I have been asked, then I am accused of being too stressed. Or it’s even worse if I demand that they do their job.

Case in point, my mother passed away and her condo is on the market. I am the executor of the estate. My brother wanted to use a friend of his as the realtor. Since I had no one particularly in mind, I agreed and asked him to have her call me. Well, he jumped the gun and had her list the house. Nit picky point here, he has no legal authority to do this. Now, the realtor should know this. I didn’t make an issue of it because the house was listed, who cares? However, it’s been since July and she has not called me once. I called to discuss the listing and replacing some flooring. Got her assistant, left a message. She never returned my call. Then, she set up an open house. She asked my brother to have ME call HER re the open house. So I did. I asked about the flooring again. She wants me to replace the flooring. Fine. But, until it’s replaced, I want the on-line ad to read that there is a generous flooring allowance. Still, two weeks later, the on-line ad has not been updated. She held the open house; she did not call me to let me know the status. Now, she wants me to call the next-door neighbor because the neighbor supposedly has a friend who is interested in the condo.

So, I’m supposed to find her a buyer, turn the buyer over to her and give her a commission? Am I missing something here? Plus I talked to this potential buyer in June of 2007. While the neighbor thinks that her friend may want to buy the condo, that’s not the way the friend presented it to me. And, the friend went though the house. She should have the realtor’s contact information. Or, she could get it off the sign. Oh wait; there is no sign because the realtor didn’t follow up with the condo association to get authorization to put a sign in the window! But, now my little bro is upset with me. He wants me to be “proactive” and call the realtor and tell her I’m unhappy. I would, if I was interested in keeping her. But, she hasn’t bothered to send me the “listing agreement”, hasn’t called me to see if I’m pleased with the job she’s doing, hasn’t updated the ad, and hasn’t returned messages that I have left. I’ve never had a realtor like this before. The two that I used previously, who are no longer in the business, made life easy for me, the Seller. I’m irritated because the realtor wants ME to do HER job. But, I’m not stressed out.

One of the reasons that I’m generally not stressed is that years ago I quit dealing with people who were obstructionists. If you do not make my life easier, then I do not deal with you. The kids’ previous dentist was not helpful in dealing with children with autism, so we found a new one who is. My eye doctor of 20+ years decided that he could not longer fit my mentally impaired child for glasses. Goodbye doc, hello Pearle Vision. (Note, a pediatric ophthalmologist examines his eyes; all I need is someone to buy the glasses from.) We had a similar issue with DS 1 and 2’s psychiatrist. We now have one that we love.

I guess I thought that I was the customer. While I don’t believe that the customer is always right, I am the one who should be being catered to. So, I do get irritated but I’m not stressed. There is a difference.

Thursday, November 8, 2007

Twins Reduex

My husband and I thought long and hard about another pregnancy. I was almost 40 and he, while still working, was afflicted with a chronic disease. But, we had twins that were disabled. And, only one NT child, our daughter. We thought it might be a good idea to give her a sibling to help her keep an eye on these boys. While we did not and do not expect her to feed and house them, someone needs to keep an eye on them. Someone needs to insure that they are not abused or taken advantage of. And, it’s been made very clear to us that we cannot expect anyone in the “family” to help. They can’t “handle” it.

So, we bit the bullet and went for it. And, in spite of it all, we were excited when it looked like a second set of twins. That meant the NT’s would outnumber the ASD’s! I carried pretty much to term, 37 weeks, and the boys were born weighing 6 pounds 2 ounce3s and 7 pounds 9 ounces. No NNICU this time.

Within weeks we suspected that the younger one, by one minute, had autism. He was just too much like our second son. By 7 months, we were certain. Still we waited until he was just over a year before calling in the Special Education people. When I called I was given the usual spiel about sending out a packet, fill out the questionnaire, return, they will review, blah, blah, blah. The next day I received a call back, basically stating that the director of the program said that if twinsx2 thinks that her boy or boys have autism, skip the initial step and set up the home visit. And so, the whole process started again.

Once again, we have two at opposite ends of the spectrum. As much as I hate the terms higher and lower functioning, they do serve their purpose to the under-educated in the field of autism. The younger one claps and rocks, has no speech and throws tons of tantrums. He is a destructive force. The other day, he dug into my plant and threw dirt all over my room. I have cleaned the carpet 3 times in a 7-day period. Yes, I know I should get rid of the plant but silly me, I thought I could have ONE plant. The plant is taped up, too. I use clear packing tape over the pot in an attempt to keep him out. Now, I will try moving it up to the dresser.

While I was cleaning up the dirt, he got into the refrigerator. I had just made some Jell-O, which was still liquid. It was in a sealed Tupperware bowl. No matter, Black Cherry Jell-O all over the kitchen floor. Later he screamed at us for over an hour for what we have still to figure out. Since he eats with his fingers, he adds to the need to wash the walls once a week. On the plus side, at this age with DS number 2; it was poop that was smeared all over. I’ll take dirt and Jell-O over poop any day! We were just approved for some in home help with him as well. Hopefully with the extra help, he’ll start using silverware and maybe even his words. I think he has the ability to learn to talk. We’ll see.

His older brother, by one minute, will need a kidney transplant one day. We are looking at some preliminary surgery to “clean up the plumbing”. He has hydronephrosis due to reflux. Of course, he has the worst reflux you can have, Grade 5. He is also double implanted meaning he has 4 ureters rather than just 2. One kidney was destroyed in utero, the other is ½ gone. I’m expected to be the donor but of course I have no health insurance. So, no one is keeping me healthy, except for me. Hopefully I can get a doctor to give me a physical this year but I have a hard time finding anyone to see me without insurance, even when I offer to pay up front. I received a small inheritance so I’ll spend some of that getting a check up. I also give plasma twice a week so I know some of my levels like protein, iron and hematocrit are fine.

Otherwise, DS number 3 is on track to attend Pre-K as a general education student. He will be much like DS number 1 except that he is more social.

So, that’s my family. Four very cute boys, all on the Spectrum. Making life a bit crazy for all of us. The ultimate question is that with 4 boys on the Spectrum, you’d think that we would be very popular with the researchers. These are all my biological children. My understanding is that there are 16 families in the US with 4 children on the Spectrum. Why are the researchers not beating a path to our door?