Still Learning

I have realized recently that my view of others, what I value most, and my outlook on life has changed quite a bit. Before becoming a mama to precious special needs girl, I thought life needed to operate in just a certain way to be "good". It just isn't so y'all. I am still learning to be chill when things happen differently than I would have planned. I'm thankful my journey was planned by God and not by me. 

I've realized I'm stronger than I thought possible when it comes to my girl. I do find myself in defense mode more than I like because sadly it has been a necessity. I'm still learning to respond to the constant questions, comments, stares, etc. with calmness and a gentle heart and tongue. I really would like to throat punch and scream, but I have a little girl who is watching my every move. It's exhausting always being everything I need to be for my girl. Though it's exhausting ,and I'm not sure when I slept all the way through the night last, I would not change being her mama. 

I've learned to really appreciate the kind words and actions of others. It's so easy to be negative and poke fun at others, but what good does that do? However, sharing a smile, hug, and kindness shows you care. I'm working to improve in the area. Some examples that have brightened my day have been a lady in Wal*Mart telling me, "You seem like a good mama." She said this to watching me talk to Libby about stopping at the end of an isle and look to see if others are coming. She could have walked right on by us, but her simple, short comment made my day! A hug from one of my girl's therapists after a challenging session made my day! Smiles. When someone smiles at me, I smile back. Day made. I'm praying to become more encouraging to those around me. 

I'm learning to be okay with where we're at. Lately, it's been a hard place. Life has been throwing punches as soon as we think we're on our feet and then we're knocked on our butts again. I have realized though that even when things are straight up hard, we still have our joy. There will be tears, anger, fussing, but ultimately joy. 

Being a special needs mama has made me step back from judging. I used to think when a child was screaming in a store that his/her parents needed to do more. I now know that it just isn't always the case. I'm usually the one with the screaming child. I do the best I can, and it still happens. You know what? It's okay too. 

There is more I wanted to say, but it has taken me an incredibly long time to just type this because.... I'm a mama. HA! It feels good to be blogging again. Until next time. 

Things That Help

At our last support group meeting (for special needs parents) the topic was "Caring for the Caretaker". Oh my, it was GREAT! A suggestion was made to make a list of things that make us feel better or take away stress. I'm sharing my list. Mostly for my own benefit because as the speaker shared, you cannot think of what to do when it gets "bad". If I'm being honest, a good week at our house has a minimum of 1 "bad day".

Things That Help 

• A hot shower without worry of Libby getting hurt if it's just the 2 of us. 
• A home cooked meal that I didn't have to cook
• Going to a movie
• Going to bed early or taking a nap
• Chilling watching TV with no other distractions
• Sewing alone
• A walk, bike ride, or trip to the gym
• Going to Target
• Enjoying a cup of coffee at a coffee shop
• A pedicure

Now, let's see if I'll remember to look back at these when I am offered a little escape on bad days. 

Not a Phase

For two and a half years we have dealt with certain behaviors with Libby. There are times where they almost disappear and times, like now, where they're very present. As she's growing and learning more, she's added more.

Today I have been hit with a fist, palm, and a book. The fist was to the eye and so hard it needed ice. I was spat on, kicked, pinched, and scratched. This is usually accompanied by yelling, growling, mumbling. The majority of this happened in a 30 minute time span.

Days like today are hard. Very hard. I feel inadequate in how to help her learn to not act out her emotions with aggression and anger. I want to know what she's thinking so badly so I can help her and love on her. Right now we still have a communication gap. We're working on it. Communication has improved by leaps and bounds but this specific area of emotions remains a challenge.

I hope and pray we'll have a breakthrough and be able to talk it through, and I pray that it's soon Very, very soon.

I'm clinging to this verse.

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?

Unexpected Thankfullness

Thanksgiving always reminds me that I need to be more thankful.  It's very easy to get caught up in the stressful ins and outs of the daily grind, and I forget all too often to be thankful for what I have.

I'm thankful that I wake up during the night to my girl crying out "DADDY, MAMA COME!".  It's not a party at 2 AM, but it reminds me that God blessed Charlie and me with a beautiful little girl.  I don't always have a good attitude in the middle of the night, but I'm quickly reminded that I longed for that for several years.  Thank you Lord for your middle of the night blessings!

I'm thankful for messes, the many, MANY messes.  Each and every mess reminds me that my four year old is curious, stubborn, and mobile!  Currently there is cereal in the floor where the box was turned upside down.  Also, Libby's sock drawer is completely emptied with it's contents strewn throughout her room.  I don't like to clean, but each mess brings on a new learning experience for both of us.  Thank you Lord for the cleaning blessings!

I'm thankful for the words that come out of Libby's mouth. She's added new words to her vocabulary quite rapidly, and she loves sharing them with others.  The embarrassing ones are used mostly in public. For instance a buggy wheel dragging and making a loud noise results in Libby yelling, "MY MAMA POOP!" I let it embarrass me at first, but now I just say, "Oops, excuse me." Or the fake burping after a real burp.  She'll practice her fake burping skills (she's really good!) until I make her stop.  She then proceeds to tell me, "Mama, I burp!"  Thank you Lord for giving my daughter the gift of speech!

I'm thankful for stubbornness.  Go ahead and look in the dictionary to find stubborn.  You'll see a picture of Libby Rose... and me!  Being stubborn has helped me overcome many obstacles, and it's proving to do the same for Libby.  It's not fun at times being a parent of a strong willed child (sorry parents!), but I wouldn't have it any other way.  It's quite amusing to me that Libby and I don't have the same genetic makeup, but she's my mini me. :)  Thank you Lord for allowing me to raise a strong willed girl!

I'm thankful that I'm tired.  Seriously.  I'm not bored.... ever.  HA!  I love the duties that being a wife and mother bring, even cleaning (I'm not great at that so don't expect my house to be clean!).  I'm thankful for my job as a teacher.  I don't like even calling it a job.  It's my passion.  I'm thankful for my small business and how incredibly busy it keeps me, but I love it!  At the end of the day, I'm thankful to climb in bed and think about all that has happened.  Thank you Lord for keeping me busy!

In all seriousness, I'm working on being more thankful for the things that typically go unnoticed or griped about.  I'm a very blessed woman and have so much to thank Him for each and every day