Siblings.

I have been blessed with three children. Each has their own unique personality. There are days that I wonder if I have taught Matt and Hannah the proper ways to be a sibling to Mallory. There are days that I know are difficult for them. Mallory's behaviors can be challenging. There are days that just don't go well.

When I have this seed of doubt, my children so softly remind me that Mallory is God's creation. Created in his likeness. Unique in his very vision. Just like every one of us. As a parent my duty is to guide my children in their walk with the Lord. Yet, there are days I find them leading me. As a family, we grow daily in our walk.

This picture reminds me that even on the craziest of days. The days when Mallory takes the unbeaten path. Her siblings still see her as Mallory, their sister and they look past her differences or sometimes away from them.

Back to the Drawing Board.

I was unable to get Mallory to her doctor appointment today. When I called to reschedule, I was told that the doctor was leaving at the end of the year. So, I guess we are back to the drawing board.........

Almost Unbelievable.

Well, this is a first for me. With the craziness of owning two houses, I got way behind on groceries. I had a two page list of items to get. So, Friday evening I headed to town with Mallory and Hannah to get my shopping done. From the minute we walked in to the first store, I could tell that Mallory was NOT in the mood to shop. But I was a mother on a mission, and trips to the store by myself just don't happen that often. So, we managed our way through the first stop with no major outbursts. When we arrived at the next store, Mallory became highly agitated. We were midway throught the store, when she chose to have a metdown complete with shoe throwing and spitting. As I was trying to calm her, a store associate advised me that I would need to leave the store until Mallory calmed down. Needless to say, I was mortified. We ended up packing up and going home with my two page list in hand.

Strike Two.

After seeing the doctor, we have started a new med- Adderall. Mallory has been on the med for a little over two weeks now. Initially, I thought we were seeing some positive effects however now I have changed my mind. It has made her highly emotional with some rather extreme outbursts. She is scheduled back at the doctor next week. I have stopped the med and will wait to see what he suggests.

Changes.

We closed on a different house a few days ago. Granted it's an older home, it's new to us and will give us some additional space. I am really anxious to see how Mallory adjusts to leaving the home that she has spent almost 10 years in.

Nightmare.

After the last several months of getting Mallory checked over and cleared to take meds for ADHD, we finally got a prescription. The doctor warned that most kids have to do several trials of meds to get the right "fit". Our first med is Concerta. It's in a small pill form so it's easy for Mallory to swallow. Yesterday, we were about 5 days into taking the med and ran into some trouble. Within an hour of arriving at school, Mallory's teacher called with concern with how she was reacting to the med. Daycare called me as well that afternoon. Mallory was running at 100 mph and could not slow down. She was even experiencing nervous twitches in her eyes and mouth. The med is suppose to be out of her system by afternoon but showed no signs of wearing off. After supper, she was just getting worse. I called our case manager and she arranged for an alternative med to be given at the hospital ER if things persisted. I didn't have to take Mallory to the hospital, but it was after 10 before she finally crashed and burned. Today, she acts almost hung over. Her body has got to be absolutely worn out. We see the doctor next week, so we'll see what the next step is.

Halloween

Last year for Halloween, I organized our church sponsored event, Fall Fanfare. Mallory and I had a lot of fun and I hoped that this year would be the same. I scheduled Mallory's P.A. for the evening, just in case......



Mallory had a blast at Fall Fanfare. She walked around and played games. She even worked a few games and handed out candy. This year, we had a large inflatable caterpillar that the kids could crawl through. Mallory typically crawls inside and sits right in the middle so that other kids cannot get through. This time, she crawled right on through. No pit stops.



Her memory amazes me. She remembered members from our church and the costumes that they wore the previous year.



All in all, it was good night.



After the event, Mallory's P.A., took her to a haunted house. They had a lot of fun and Mallory laughed through most of it.

Ugly.

It's been an ugly day. Challenge after challenge.
It started with getting on the bus this morning. I have been working with Mallory on walking to the bus from our deck each morning. This morning she decided to throw her bookbag in the yard and sit on the sidewalk. When I finally managed to get her to stand up, she spit at me and walked defiantly to the bus. What a way to start the day.
For lunch, I met Mallory and her case manager at La Fiesta. Mallory had earned 7 stars for staying dry in her pull-up at school (1 star for each day). Her reward was lunch with mom. When I arrived, Mallory came a running. She smiled big and gave me a big hug. (Melted my heart!) We had a seat and ordered our food. The wait was unbearable for Mallory. The more she anticipated her food coming the more agitated she became. She kept wanting to drink her 16oz chocolate milk (that's the smallest that they come) in nervous anticipation. When our food arrived she practically inhaled it. But anyway the rest of the meal was pretty uneventful.
After work, I picked up Matt and Mallory, then headed to pick up Hannah at dance class. Mallory did wonderfully waiting the 5 minutes for Hannah to finish. I was so proud of her. But, when we left dance class to head to the van, Mallory start in with another tantrum. She smacked the lady that we walked by (thankfully, she knew Mallory from school). Mallory then proceeded to throw herself on the sidewalk, kicking her feet, and screaming. I scooped her up and rushed to the van as quickly as I could. I wanted to save all the other mother's from the sight. I was mortified. We went from such a nice moment inside the dance studio to a very ugly moment when we stepped out the door. No precursor. No warning. What fun!
On Monday nights, Mallory's personal attendant does not arrive till 6. Once she arrived, Mallory became defiant. We have been working on transitioning Mallory better when both of us (me and the PA) are in the house. We've not had very good luck.
Needless to say, it's been a crazy day!

Undescribable.

The last few weeks have been rough. Trying to make some adjustments. However, nothing happens as quickly as I want. Mallory does see a specialist at the end of October to adjust her meds. I find it somewhat humorous that we waited 6 weeks for the results of her Holter Monitor and now we will wait another 5 weeks to make some changes (hopefully).

Therapeutic Riding

Mallory's horse. They moved her to this one for a couple reasons:

1. He doesn't get the shakes.

2. With a smaller frame, Mallory has to work a lot harder on balance.

3. He's not cranky.

Mallory graduated to leading her horse this year!

Every session starts with putting on our helmet.

Getting ready to ride. Notice that Mallory's horse does not have a saddle!

Mallory also does various activities while riding her horse. She has a favorite baby that she feeds, diapers, and dresses.

Working on leading.

The volunteers work so hard to make every session successful.

We even ride backwards. This helps to improve balance.

The weather has been so nice that Mallory has been able to ride her horse outside.

If you want to know more about therapeutic riding check out the Independence Farms website at www.independencefarms.org

Off to a GREAT start!

We chose to hold Mallory back a year, so she is repeating 3rd grade. This has proven multiple times already to be the right decision. Mallory has the same special ed teacher and paras. Her gen ed teacher is new but not to the school. Mallory has had almost no outbursts or behaviors since starting school. She was rewarded with a trip to La Fiesta with her case manager today.

Tunes.

Long car rides. Mowing the lawn. Funerals. Basically anytime we need to keep Mallory occupied. The I-Pod Shuffle has been a blessing. I have loaded some of Mallory's favorite tunes and she will sit and shift between songs just long enough for me to get something done. Brilliant! Now if we could just find some indestructible ear buds!

Still Waiting.....

We are still awaiting the results of Mallory's Holter Monitor. It has been 4 weeks now and we are anxious to hear the news. Our hopes are that we can make a few changes in Mallory's ADHD meds.

Crazy Busy.

It's been a busy couple weeks. Both of Todd's grandparents passed away over the last 2 weeks, so we have been grieving their loss. Mallory seemed to understand that her great-grandparents had died but couldn't appropriately convey her feelings. This was very difficult for her. I was a little worried about how she would handle the first funeral. I packed her I-pod and prayed. She did remarkable well. She listened to her music and stayed pretty quiet. I'm not taking any chances with the second funeral tomorrow. Mallory and Hannah will be staying at daycare and sticking with their routine.

Holter Monitor

Mallory was put on a medication for her behavior last winter. Because of her heart defect, we were pretty limited on what meds we could use. Most meds for ADHD stimulate the heart. Sadly to say the med we have been using is not very effective. In order to put her on a more aggressive medication, her cardiologist recommended a Holter Moniter. The monitor studys her heart for a 24 hour period looking for abnormal rhythms and rates. If her study comes back uneventful then we can try some new meds.

Today, I took Mallory to the hospital to get her monitor. She was excited. Mainly because of all the attention she was getting.

Mallory laid very still when they applied all of the patches for the monitor. The big question is how long will they stay on?

All done and ready for the day. I wonder how many times we will replace patches or reattach wires over the next 24 hours.

A little break...

Our luck has turned............for the better. With the services established for Mallory, we now have a personal attendant. She will work a few days every week with Mallory on behavior and social skills, but will also give us some much needed respite. Believe me...I love Mallory dearly, but you have to be able to recharge your batteries once in awhile.

Last evening, was Mallory's first evening with her personal attendant- P.A. It went great. They are working on settling into a routine. THIS will be beneficial for ALL of us.

Relaxation

We had family in Abilene last weekend for a visit and we took them on the Abilene Smoky Valley Railroad. Mallory did really well on the train ride. I think the swaying motion of the train is relaxing for her.

Mallory checking out the scenery.

Mallory lounging on her cousin Morgan and a lady that she just met that afternoon. Mallory likes to seek out people when we are out in public. Fortunately, most people are very understanding and accomodating. As you can see in this picture, Mallory was very comfortable, resting her legs on the stranger she had just met!

Malory lying down on Ashley's lap and playing with Jacob. Or as Mallory calls him "Jake".

Great Weekend!

Well I guess we did something right this weekend..............

We had family back from Virginia and I made the bold move of getting a motel room so that we could enjoy some time with family. Our previous experiences with overnight stays have not been smooth or pleasant. I really dreaded the stay.

We drove up Friday afternoon, and attended the county fair parade. We were blessed to have dear friends there whom have a son with autism. As Mallory ALWAYS does, she migrated over to another family. Luckily, it was our friends whom were VERY accomodating and understanding. Mallory sat with their family and had a wonderful time. This also gave Todd and I actually some time to take in the parade and watch Matt & Hannah.

Later that evening, I headed to the motel with Mallory and got her settled and ready for bed. She fell asleep quickly and stayed asleep till 5:15 a.m. She then lounged around and watched TV until the rest of us got up for the day. Pure Bliss!

We spent all weekend with our large extended family on the Walter side, Mallory handled all the excitement and changes in schedule very well. Almost NO behaviors!

It was a great weekend!

Time with Dad

Todd is on vacation this week. When I left this morning to take the kids to daycare and go to work, Todd took Mallory to breakfast. She was pretty excited to hang out with her dad. We have found that the one-on-one time works wonders.

Glasses

Mallory has had her glasses for a week now. We have been "conditioning" her to them. She wears them during the day, supervised, and only for required activities. She has done better than expected with them. Whenever she has them on, she gets very excited, and vocalizes and signs to me "Momma, I see!"

I started this blog as a way to reflect on all the aspects of raising a child with Smith-Magenis Syndrome. Every day is a mountain to climb, never knowing how far you will get, but always striving to reach that peak.