The last 2 blog posts are here:
Ashleigh lost her TSS over a month ago. I think it was 6-8 weeks ago. Her behavior got bad around the time that her 6th grade banquet was happening. She did not like the idea of changing schools (from elementary to the Junior High). This was also around or before the time she lost her TSS in our home. It was not our fault. Her TSS re-injured her shoulder & she could not be in our home. She has to be able to lift a certain amount of weight & she could not with the arm in a sling. I understood, but for a little girl, who is used to seeing her TSS every day did not understand their company rules. I was calling & talking to the BSC about my considers about Ashleigh not having a TSS & that we need one very soon. I did this weekly & sometimes more than once a week!
Ashleigh's behavior increased intensity. How do you explain to Noah why when you don't understand yourself? By the time, weeks passed Ash was not listening to me or Shawn. We would repeat over & over again the phrase "Clean your room", but it did not work. She would hit her brothers & I would tell her not to, but that did not matter. Something inside her did not get that was wrong to hit them. Ashleigh did not get the right/wrong, that there were more than just her in our home (I will give examples in a second), & I know there is more, but I can not think of it right now.
The example of that there is more than just her in our home is Milk. She loves milk, but when we are low on it, she does not think "should I drink a little or a lot?" or "when will mom or dad go to the store to get more milk?" Ashleigh will finish the milk then we won't have any for the morning. There are times that I will not go out with 3 kids because I can not physically do it with my back. I need to eat in the morning so I can take my meds before I leave the house. When this happens, I find alter items for breakfast for the kids. Ethan eats dry cereal still so he isn't an issue.
Her new TSSs started in the last week or 2. I have 1 for the morning hours & 1 for the evening hours. The morning hours will be gone before school is started. We will see how Ashleigh's behavior will be.
Ashleigh is stealing items, food throughout the house. She is calling Noah & Ethan names. Lying to me & Shawn. We started a Family Contract on May 2 & we are updating it for Summer with the help of the BSC. We also have Our House Rules. We have House Rules based on Ashleigh's Behavior & based on Noah's behavior. I am going to be working on a Family Contract for Ethan soon. There are some areas he needs to work on like potty training. I am also going to work on his House Rules, too. When we redo the Family Contract & the older 2 sign them, then we will go over the House Rules, which basically are the same between Noah & Ashleigh, but there are a few differences.
With no TSS in our home for let's say 6-8 weeks, Ashleigh's room has reverted back to her old room in our old house, which is not good. You know I need to take photos of this. It is the only way for others outside our family to understand what we deal with on a daily basis.
Raising a special needs child is hard, but it is rewarding. I am trying to read books about Special Needs kids as much as I can, but I am having problems finding books on Ashleigh's disease. THERE IS NONE!! NOTHING ON SPASTIC PARAPARESIS. A fellow Cheerleader (For more information about what I am talking about when I say my fellow cheerleader click HERE) posted on her Facebook wall the other day about writing her book. I have been debating about writing one as a mom of a special needs child & our struggles with it. In college, I did great with all my writing courses. I would also take some classes if I need to. My fellow Cheerleader told me to go for it!
Right now I am reading "Parenting Your Complex Child: Become a Powerful Advocate for the Autistic, Down Syndrome, PDD, Bipolar, or Other Special Needs Child" by Peggy Lou Morgan. I admire Peggy Lou. She adopted her son, Billy Ray. He has all these diseases in the title of the book, but she stayed right by his side like any mother would.
This book said that "Life with a Complex developmentally disabled child is like a war with many battlefields. Battlefield one: Your own home can feel like a combat zone. You child may be agitated because of frustration over being in inappropriate programs in school or with his schedules at home and away. He may be confused about what is expected of him. He may know what he is going to do next, so he is worrying about it. He may sense the tension you feel trying to get help for him. He does not know why you are upset. He may get agitated, destructive, and aggresive. When you child is uncomfortable with school or other problems, it influences his behavior and puts stress on the whole family. He may sleep poorly, so both you and your child live your lives sleep deprived. There is little peace in the home for anyone." We do not have the Battlefield Two with the schools & Agencies since we got our Child Advocate. She is the best!!
"Battlefield three: Going out in public can be like walking into a fire-fight. The laws granting equal control only what businness mucst do, not how other people must act. People stare or make inappropriate behaviors, and cause you to become upset. The more you are upset, the more your child picks up on it. Everywhere you take your child can turn into a struggle. Slow waiters or grocery clerks, too many displays in the store, etc., can affect his behavior."
Peggy Low is also right about "Life with a Complex Child is not "usual." Finding understanding is perhaps the most difficult part of parenting a complex child. Working with those you expect to understand most may be more frustrating than working with your child." Ashleigh is a Complex Child. I have never looked at it that way before, but this book has helped me see it this way.
I told Noah to use this with Ashleigh to avoid Power Struggles with her: This would work with Ethan, too!
"I would rather we do ------"
or
"It would be better to -------"
Noah said that he loves these especially the second ones. I am going to write them down for him & so he can show his therapist. I know she will love them, too!
Peggy Lou said to keep a journal. I do this for my boys for their asthma, but not so much for Ashleigh. I need to restart this. I do have a journal for her. I will restart this. It is on my night stand. Even though Ashleigh does not have Autism, Bipolar, PDD, Down Syndrome, this book was very good to read. In the journal I keep for Ashleigh, I do not do summaries for doctor on a separate piece of paper. What I do is the day of the appointment or the day before I write down my thoughts of what I want to tell the doctor, what has been going on with Ash by going through the journal & my blog & writing it down right there in the journal.
I love that Peggy Lou told her readers about her son's service dogs. It made me realize that maybe Ashleigh may benefit from a service dog especially after I saw a post on Facebook. I am not going to post this Facebook post because it is close to my area.
This book was very informative!!
I am off to do laundry that I need tomorrow.
Melissa
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