Sunday, September 21, 2014

A Sunbeam

 



I think Sarah had too big of a lunch to want to stand in her sunbeam.  Today she was happy just lying in it:)   I love this picture of her.  She is so precious
 
 
Yep that big bowl of THICK chicken noodle at our favorite restaurant followed by a big bowl of ice cream did the girl in:)  We say all the time she loves America for its ice cream!
 

I just love this girl and everything that she does, even poopy diapers.  She laughs every time I change her and sometimes it is hard to get her clothes back on right but I love how happy she is, no fear, just complete trust and love.  She was fearful when we first began changing her, I think she expected to be hit for soiling herself.  (from what some other children adopted from there told us)   Now she knows she has no fear of punishment so she is just happy all the time.  The only thing Sarah is fearful of is the vacuum cleaner, we have to move her from room to room & shut the doors while we clean  (don't' worry that doesn't happen too often LOL)  She loves to have her hair blown dry, as long as I start on the low setting first.  She is just so sweet, what a blessing to be her mom!

Sam has just been doing amazingly on his strict schedule.  He literally has quit biting his fingers and they've almost healed up.  Last night he was able to sit beside me contently while I watched tv without getting hyper or going crazy having me rub his back for an hour.  Today at the restaurant, he was able to wait for his food, without getting upset.  This has worked better than anything ever!!!!   We work on keeping to the schedule as close as possible and it is so worth it.    Those two years that we had so many eye drops (44 a day) I had him on a crazy tight schedule and things were really good with him.  Then since then, he's always been on some type of schedule but the past two years.....well....I'd get into a habit for awhile of doing things one way but then something would change it.  But now I'm determined not to let anything change his schedule.  I had stopped giving him daily naps, one reason was the teachers who come after 3 pm and the other was having to pick up Shad from school.   So some days were more structured than others.  But that was no good for him, he craves structure.  I fully understand that now. 

I let the school know, and of course I was asked to CHANGE his schedule.  LOL.....so I met with a behavioral therapist who told me to put him back on a schedule...but OOPS don't put him on one that would work for HIM...but rather work for the teachers.   The beauty of IEP (Individualized Education Plan- only the individualization is for the teachers not the students IMO)  I'd always resisted having teachers come after 3 pm because I felt it upset his schedule plus it is winding down time at our house, getting supper, clothes ready for the next day etc.....   

Sam is on homebound services and some teachers who do homebound only do it for extra money AFTER they finish teaching for the day so you have a tired teacher and a tired child....not good.  As you can tell, nothing is for the comfort of the child, but rather the teacher or the school schedule.   Can you tell that I'm just a tiny bit sarcastic about all of this?

Well it's Sunday night and we are gearing up for a busy week of teachers, therapists, doctor appointments and school.  Hope you had a good weekend and will have a good week. 

6 comments:

  1. I must have missed it, but what are you doing with Sam (strict schedule?) that has helped with stopping chewing fingers and not getting upset? I would love to know & apply to my own kiddo!

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    1. It's been great!
      So his schedule is ....
      9 am get up
      Change clothes
      breakfast
      play in room
      11 am an hour outside
      12 lunch
      play in room
      3pm nap
      up at 5pm
      play inside or maybe back outside
      6pm supper
      play in room
      8 or 9 pm bath
      bedtime routine.....

      It's amazing his little fingers have almost healed up from him biting on them. I hope it helps you too!!!!!!

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  2. Blah bBLAH BLAH! I love your blog n reading! But it seems you love your lil Sarah more than Selah, and forgive my English as it is not ky first language! I been trying to hold it in but evey time i read a post u brag n boast about your kids but no harm in that i would too! One post i read u said something lije well since ive updated everyone else-Selah is ok no storming blood pressure ok and im a happy mom! Butthats all i feel since u have made it ckear u wrte going for saSara n not Selah that u probably have a bit if favoritism and dont see it! I really think poor Selah gets left out alit i have spent about 2mobths reading your entire blig n i feel that wY and feel bad!I try hholding it in i kbis you may not post this comment but just my opinion! And im a Russian momma! Just try not to make her the last ry hing u rant or blog about because you do it alot! Even if its hyst medicine! Yes i have a special needs child i knoe it gets challenging but try not to let it shiw it rubs some the wrong way snd im nit the only one to say it but others feel horrible to tell you! We in blig eord do collaborate and have chosen me to send u a message, maybe not as i have written it but still u get tge message!

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    1. It's funny you should write this, if you look back to early 2013 I had someone write me and tell me all I ever talked about was Selah....what was up with the other four?????

      With Selah we adore her and our family revolves around meeting her needs first. That means all our decisions are based on what is best for her. Selah is non responsive for the most part. There is not a lot of things that change with her. I wish with all my heart I had new things to tell about her every day. But everything in our life is now different because of Selah's accident and it is hard to explain to someone who does not live the life we do. Selah is here and we love her and will always make sure she has everything she needs. We will take care of her but most of the time, she seems not to be very aware of us. It is hard to explain..... But please know she is very very important to us, even when I don't have anything new to share about her.

      Although we were going just to adopt Sarah first, we know that God had Selah as a surprise for our family. While we are heartbroken that the accident happened and changed so many things, we love Selah and she is as much ours today as she ever was. She was meant to be in our family. We would not be complete without Selah.

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    2. I want to add, from an American perspective, many families would have chosen to place their child in a full-care facility whereas the Clanton's have chosen to keep Selah at home and adjust to her daily (and nightly) needs. There are many facilities in the US that are available for people in a state such as Selah. The fact that she is home with her family tells us in America that Selah is much loved and very cherished even when there is nothing new to be shared about her on the blog.

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    3. Thank you, In fact we were pressured to put her in a nursing home several times. One doctor pressured me so much I had her removed from Selah's case in NY. Then the social worker talked to us and told us to "think about OUR quality of life & our other children" I told him to shut up......

      When we were trying to get her transferred to Florida, at one point we were told the ONLY way was to admit her to a nursing home. But we were told by someone not to do it as the nursing homes would fight to keep her and cause problems for our family. In fact the Dept of Justice has an ongoing fight with pediatric nursing homes in Florida for that very reason.

      We were so scared to bring her home, TERRIFIED to say the least but we could not put her in a nursing home. How could we do that to Selah?????

      God helped us to not give up and not give in. Because we refused they (doctors, insurances and social workers) had to come up with another plan which was putting her in a short term rehab while we got our home ready. Then we had to fight for nursing and do some of the nights on our own for awhile.

      We never know the future but as long as God helps us we will keep her in our home. She is comfortable and she knows when she is at home in her room. She can be upset and come through the door from a doctor's appointment and she immediately calms down...... that makes me happy.

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