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?


At November 8, 2007 at 11:43 AM , Anonymous Maddy said...

A very good question! Perhaps you might consider approaching them instead.
Best wishes

At November 8, 2007 at 12:03 PM , Blogger twinsx2 said...

I have. I have signed up for numerous studies. The only one we were accepted for involved parental stress. I'll keep trying!


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