What does support mean?

From the Merriam-Webster Dictonary

Support

: to agree with or approve of (someone or something)

So let's take a journey through yesterday with my cute daughter who appears to be incapable of wrong doing, meanness, spitefulness and other such behavior. 

I leave home about 9AM and Libby has finally started to accept me leaving without full meltdowns so far so good, Cilla has planned to get some of her sewing work done in the morning before nap time and a busier afternoon. By noon Libby has destroyed a drawer in her dresser, strewn toys across the landing and will not accept anything but bodily contact with Cilla, 100% of the time. Cilla is now feeling behind in her sewing work, the playroom and Libby's bedroom have to be cleaned up because we have our house on the market. During the course of the day yesterday Cilla was pinched, bit, hit, spit at, yelled at, and then told that it's "cute" that an hour's worth of laundry was strewn across the floor.  

Let's move on to the afternoon. We had a meeting at 6:30, I left work early to meet them for supper and from the time they left home to the time they reached the restaurant (15 min drive max), Libby had taken off 2 shoes, 2 braces, 1 insert for a brace and glasses. A good portion of which was thrown at Cilla while driving. The only reason that the hearing aid isn't in the equation is that she is not allowed to have the hearing aid as it is equivalent to candy and will be chewed on as such and then thrown in multiple pieces  This is all before even attempting to eat in a noisy public place - I'm not even going there.

So back to the title. What is support. I can say with confidence that while most parents can relate to this type of day, they most likely are not having this type of day weekly or even daily.  We LOVE Libby, but some days her behaviors will drive you to the edge before lunch. Sometimes all that is needed is a simple, "I can not begin to understand what you are going though but I hope it gets better." Because quite honestly from our standpoint when we here someone with a complaint that their child had a 10 minute fit and it has worn them out and they now "know" how we feel..... Yeah, no. 10 minutes are a nearly daily occurrence. 30 minutes, an hour, occurs frequently.  Trust me, we've tried all kinds of methods in modifying behavior, most with limited success. We realize that we are not the perfect parents by any stretch of the imagination but our child does not respond to traditional discipline, our child is not the latest "fix it" project to figure out why she did what she did or what appropriate punishment is, If you really want to be a support to a family with a special needs child simply be there to listen. They don't need a "fix", they don't need advice because they have most likely already received a "fix" or "advice" from a family member or "professional" on how to handle the situation and those solutions are not working or may take many, many, many times of the same response from the parents to impact the child. They simply need someone to listen and say, "I don't understand but I am here to listen."

Here is another article on things that are great options for being a support to a friend with a child who has special needs.  http://www.huffingtonpost.com/m-lin/special-needs-parents_b_1338169.html

24 Hours

Here is a glimpse into a typical day for us (Monday - Friday). 

We'll start at 12:00 AM.

Libby doesn't sleep through the night anymore. We're not sure what has changed, and we've tried several different methods to try to get her to sleep through the night. What has worked for others doesn't seem to work for us. We're not sure if she's waking up scared because she's alone or having a bad dream. Regardless, we're up in her room about 2 times per night starting at about 1:30. It takes between 15 - 30 minutes to get her back to sleep. When she has night terrors, we just crawl in bed with her and hold her. It's the only way we can calm her down. Bless her heart.

She wakes up around 7:00 AM, but it is sometimes earlier. It takes Libby a while to "get going". She's a grumpy bunny in the mornings. HA! She likes to watch Thomas the Train, Super Why, Monsters Inc., and Monsters University in the mornings while we get breakfast and lunches ready. I am now going into school at 7 every morning so it's a quick kiss, and I'm out the door. Sometimes I leave her crying, "Mama no go shool" Heartbreaking. Charlie brings Libby some "chood" and she eats while he finishes tidying up. Libby's turn to get ready can be a battle sometimes because the girl loves to stay in her pajamas! Charlie gets ready quickly while Libby plays.

Charlie takes Libby to school around 8:00. It can be later if it's been a rough morning. At school, "Daash" aka Dale walks Libby down to my room with Charlie. Libby then tries to get my kidlets to "Shing dush or piders". I give Libby the be a good girl speech, kiss and hug, and send her to her classroom next door. 

During the day, Libby and I see each other a few times. It's the best! 

At 3:00, Libby comes to my classroom, and she plays with my kids or "wowks" by "kalking" on the phone or stacking papers. She's very much a fan of sharpening pencils right now! My school kidlets are great with Libby. It's so heartwarming! When the kids leave, Libby has to visit with "Staash" aka Steph, Cheesa aka Lisa, and Shayull aka Shell. These ladies are the other 3 2nd grade teachers, and they love on Libby. :) 

We leave school most days at 3:30. We go home right after except on Wednesdays we run errands before speech. At home, Libby has to have snuggles. She needs my complete attention for 30 minutes - an hour and loves to be held like a baby. It's great bonding. It's sometimes a struggle for me as I've been going nonstop for over 8 hours, but she's worth it. Once we finish snuggling, I try to get Libby to play so I can get things set up for supper or try to sew. Getting Libby to play independently is a struggle. She usually follows me around the house. In the kitchen, we have a drawer that she gets to go through while I cook, and she will occasionally cook at her kitchen. In the afternoons, we seem to deal with fits so I've started trying to feed Libby a snack around 4:30 to see if that will help. So far so good. The fits have decreased. 

We start cooking at 6:00 and have it ready for Daddy when he gets home between 7:00 and 7:15. This is why we want to move. It's so late by the time Charlie gets home. :( Anyway, we eat our "chood" which results in a few time ins from dumping the plate, cup throwing, etc. 

After supper, we have a few minutes to play and then "A dath in da pub" Libby is part mermaid and LOVES bath time! By the time we finish with drying hair, flossing, etc. it's about 8:15. Libby gets to pick out 3 "gooks" to read and we enjoy reading them in her "wock wock chair" Then it's in the bed! She's asleep by 8:45 most nights. She stays asleep until the first wake up at 1:30. 

Once Libby is in bed, I'm able to get some sewing finished and occasionally watch TV with Charlie! 

On Saturdays and Sundays our schedule is more flexible. :) 

"Hep me!" as Libby would say!

Long time, no post.

I've started writing a new post several times now, and I keep deleting. I'm stumped.

One of Libby's new phrases is "Hep me". So... What would y'all like to hear about?