Wednesday, October 26, 2011
Aaaaaw! Gabriel is smiling in this one! :o) He was so sick with mono.
Samson (16) Faith (10) Isaiah (7) holding Pauly (4) Kitty(8) Lysa (9) Gabriel (16) holding Julius (4)
Julius is still stressing over being outside, he can't stop looking at the ground because he hates being put on the ground or in the wagon!
Pauly is very relaxed in this picture. (He had thrown his socks off before in frustration!!) He is looking at Dad and the camera. Moments where Pauly is in tune to us and paying attention to us are few, touching him helps, but if the kids hold/touch him he does not tune into them like he will with Gabriel, Tom or I.
I wish everybody could come over to our house and see how the boys are changing!! At night they are having long periods of being quiet in the night. The still sit up and rock, and Pauly softly grumbles and breathes heavily when he can't sleep. But from watching the other children sleep next to them, they are learning that darkness means quiet! Sometimes when I turn lights off for bed time Pauly whines/cries. I don't think he slept in the dark. My lights are on with the TV next to where he sleeps so it is not completely dark until I shut them off. There are always soft battery operated night lights on in the hallway.
Only Julius grinds his teeth now, about 6 or so times a day. It is a miracle that Pauly stopped grinding his! They did this constantly, non-stop. But we would carefully squeeze their cheeks and say "neh" (no). Pauly no longer stuffs his hands down his throat!! He used to do this while drooling, lots and lots of drooling. He still drools- mostly when he's bored. We are reminding him to swallow. (Samson was much more drooly.)
Potty training is going to have to wait with the boys until next year, or even the next! LOL!
We started potty training Samson at 4, he had been with us a year. When he was 7 , I told Susie's mom (Susie was our client with DS who passed away after 16 yrs with us) that the books said that kids with DS should be potty trained by 7-10 years old!! Susie's mom Verna (I love her mom) looked at me and said "Well then you have 3 more years!" ROTFLOL!!!! That was not what I wanted to hear!! I wanted to hear that he would be potty trained soon!! LOL! That she had potty training advice for me! But Samson was s....t....u....bb....o....r....n!!! And yes, it took 3 more years. His last accident was while we were up north in October!! Oh-my!!! I had mentioned in a previous post how I have decided that potty training is the least of my worries with my kids with DS. MA and Susie were completely potty trained. We never had a worry. But once Alzheimers hit Susie at 39 yrs old, she was no longer potty trained. Same with MA, for the last 6 yrs she has slowly gone from potty trained to total wetting, and partial BMs in her depends. I know TMI, but it is reality.
My goals for my kids with DS is that they love God, believe in Jesus and learn to be flexible. That they are well socialized, that they respect their staff at their work place and are cooperative with therapies and medical treatments. Does that sound too simple? Not for kids with DS. They are just as opinionated, stubborn, and set in their ways as we are. The only difference is that they are very "genuine" (honest) in their responses. If they don't like you- they don't like you! If I don't like you, I am going to be respectful of you and not let on that I don't like you. I am going to tolerate you until my interaction with you ends. My kids with DS and MA depend on us and others for everything. The harder they are for people to get along with, the lesser their quality of life is. We want them to have their own interests as we do, but we also want them to realize that they need to do what others ask of them first.
An example with Samson is, that when I ask him to do something or tell someone something- he does it. If Gabriel or Dad ask him the same thing, he walks away and pretends to do it. He never tells me!! He learned this partially from watching his sibs say "I'm going to tell mom!" and then they walk away and pretend to. So now we are working hard on having lots of people, not just me, request him to do things or tell someone something, and then making sure he follows through on it! He is also expected to be polite and have a good attitude about it.
Many people unfamiliar with DS think that all people with DS are "happy". Our Susie was one of the feistiest and ornery people with DS that we had ever worked with! We have seen that depression/low Serotonin is a pretty common cause of depressive behavior or acting out with our clients with DS also.
Right now at this stage of life, MA is totally focused on what she wants to do only. This is pretty common as people with DS slow down and get older. Often others think this is a "behavior". MA now likes to do new things like hoarding and is unable to pick up after herself with the massive amounts of things she collects. If she goes into the living room to watch TV, she brings a huge stack of magazines, a bag of things, and a fist full of pens. She never did this when she was younger. She becomes easily frustrated when she can't carry everything, or if she has to leave something in her room. She also becomes agitated if she has to stop doing what she wants to do and transition to eating or bathing. We don't take this personally, but there is lots of fist swinging at us, door slamming, screaming and tantrums. This is totally not her character. But the alzheimers has changed her completely. Oh- how we wish we could turn back time. Recently a Dr told me 62 was the average length of life now for a person with DS. MA is almost 55. The time just goes too fast. No need to waste it on skills that are only used during school years.
Anyhow, just my humble opinion. :o) God is the expert and I pray with all my heart and all my soul that I am listening and hearing His lead, not mine!