Thursday, February 5, 2015
Some Realities of our Life
WOW so the kids' IEP meeting ONLY lasted two hours! Miracle! We only had a few issues one was that Sam and Sarah's Orientation and Mobility services is being overseen by a teacher who did teach them until I had her removed. I had her removed for a myriad of reasons....bottom line she did not know how to teach blind kids who are as delayed as my two. One thing she did was walk out to her car with Sam and then let go of his hand as she rummaged through her car. Thankfully Steve was outside (I'd sent him to watch her) and he ran and caught Sam! The teacher was parked right by the road! Then a few weeks later she YELLED at Sam in a very angry way in front of me and two guys who were working on our plumbing. After that she was gone. Frankly I do not want her to be associated in any way with my children.
Second there was a question about summer services for the kids. I think that will work out. All in all it was a good meeting and I'm so very happy with the teachers who are working with my kids. They are all interested in really helping the kids and pleasant to be around!
We have a new nurse. We've had one small spot that we've been trying to fill for awhile. Our other nurses have worked extra hours and we've been covered. We had a nurse in it but I caught her in a lie last weekend and that was that! Luckily the agency sent someone right out who seems like she will fit in good. I've been lucky for the most part with nurses, I have three really strong ones who are in tune with Selah and who can read her like a book. Having nurses in your home 24/7 is not always the easiest thing but we have to have it!
Throughout the day not only do we have two nurses who do a 12 hour shift each but we have teachers and therapists. For example today we had the nurses, the physical therapist, and our vision/education teacher. We have teachers/therapists every week day except Fridays.
Before everything happened, Sam did have a few teachers but nothing like it is now! It took some getting used to, especially in our little house. Sometimes our parking area looks like a used car lot LOL
We made the choice with Sam to put him on what is called "hospital/home bound" so he'd get services in the home. When he was young he was sooooooo sickly! Plus he had a crazy amount of eyedrops to do. He is much healthier but I don't know how he'd be if he was in a classroom all day. Plus he still has lots of eyedrops to do and his eye is so fragile. If it got bumped or hit, he could go blind. If he got an infection like "pink eye" he could lose his eye...... There is much to think about having him in a classroom setting. If something happened to him or his eye I'd never be able to forgive myself.
Of course with Selah, it would not be good for her to go to school She's far too fragile and it would upset her terribly. Some families send their kids like Selah to school but often those kids end up sick. I'm not taking any chances.
With Sarah, I think emotionally she would not handle being away from home all day. Since the other two have to be home, there is no reason to send her and stress her out. She went through so much emotionally in the orphanage, it's a miracle she has bonded to me like she has. But she is BONDED and I know even when I'm gone for a few hours and come home, she is all about Mommy. I know some folks would say send her to school, toughen her up but Sarah will ALWAYS live at home, she won't be able to hold a job down so why stress her out? When she stresses she gets these awful rashes and she gets upset. I figure she has had enough stress in her little life!!!
We are putting together a plan for the kids as they grow older.....and we grow older.......
Our new home is handicapped accessible in every way. Since we have three kids who will always need care, we could incorporate at some point (once Jon and I can no longer care for them or when we pass away) and one of the boys could make the house a small group home and add a couple of more kids/young adults to it. Then that son or both of them could be the manager(s) One of our therapists gave me that idea and you have no idea what comforts that brings to me.
If you ask any special needs parent their greatest fear and most of the time it is the future/outliving your child (or in our case, children)
Having the beginning of a plan in place brings me some peace of mind. Also a new law has passed making it legal to have savings accounts for children who are special needs. Before it was not allowed and was counted as income against the child if the child/family applied for any type of government assistance even when the child became an adult.
So school meetings, bad teachers, nurses, and the future are just a few of the realities of my life that most other people have no concept of....... sometimes these are some of the hardest things!
For us, our lives revolve around all our kids but we know one day Steve and Shad will be on their own and we are proud of them. Our three little ones will always be with us and may out live us. Who knows
If you've ever wondered, I have asked some doctors the children's life expectancy. Of course no one has any real idea. Children like Selah can live for decades if they are well taken care of and stay stable. Sam has a lot of little oddities that worry us very much and we do all we can for him to keep him healthy He has some deletions on a chromosome which is very worrying.
In fact we go Monday for more, newer DNA testing. We all go, Jon and I will be tested again and compared to his DNA. He clinically presents as having Peter's Anomaly or Peter's PLUS Anomaly BUT he does not have the chromosome markers for it. We've all three been tested before but I guess now there is another newer more sensitive DNA test. They will run mine and Jon's and then compare them to Sam's. Almost everyone has some deletions in their chromosomes, so they will look at mine and Jon's and see if any match and if any matches Sam's. Should be interesting. I think the general idea is that Sam carries ANOTHER chromosomal marker for Peter's Anomaly, one yet to be discovered. He sees a genetic specialist here in Florida but he is part of a HUGE study at the University of Wisconsin for kids with Peter's and other eye disorders. In fact, they called our doctor and requested the updated testing. The doctor called me on our way up to NY in December and I filled her in on the past four years (they've been exciting!) and she wanted to see Sarah too.
We know Sam is missing half of a liver tumor inhibitor. We found that out about 5 years ago and followed up on research. There is ONE doctor in Utah who is studying this and according to mouse studies Sam is safe since he has one tumor inhibitor. If he didn't have any, he'd be almost certain to have liver cancer at some point!!!!! Jon and I both have both inhibitors thank God. HOWEVER when we learned this, that is when we got really serious about what we all eat, Sam in particular JUST IN CASE!!!!!
Sarah is as healthy as a horse LOL. She's been with us for almost three years and the only thing she's had was a runny nose/red throat one time and was put on antibodics. I figure she survived Ukraine....what's a few puny American germs?? It will be interesting to see what the DNA will tell us about Sarah.
Well that is probably enough of the realities of our life!!!!!!!! And you wonder why I'm like I am......LOL