Monday, December 19, 2011

Another one bites the dust

And our van is dead. Completely caput. The four of us officially have no vehicle. I feel like I'm going to be physically ill.

George came home to take Kyler to work today. He called me 20 minutes later to say when he was getting off the highway everything just shut down. It wont start,respond or even make a noise.

We are in a contest to win a van for Christmas. This couldn't come at a better time...although I have no idea what we will do until then..although I am sure we are not the neediest in town when we applied we talked about having a vehicle it just wasn't it's just nothing. We are up against many many people.

Please pray we are able to win this van. If not we are looking to make payments on a used vehicle...with a quickness

Friday, December 16, 2011

Rett Syndrome and Change

Do not go hand in hand.

I used to be a smart person. Seriously I caught on to things so fast. Rett Syndrome is kicking my ass and outwitting me at every turn.

For the last few weeks Abby has been....let's say difficult. She missed 2 days of school last week and 3 this week. If we take her out she screams bloody murder. I can't or couldn't tell what it was. She doesn't seem to be in pain. She is not having seizures. Hasn't had one since April. She isn't really having tremors either but she is not sleeping...seems mad or terrified.

I don't know why it didn't dawn on me before but she really really can't deal with change. Not of any sort. Every time anything is different it takes her forever to adjust or she just plain freaks out.

This am when I was driving home in our no heat, no air, hole in the muffler,oil leak van after dropping her father at work it hit me...duh...In the last 3 weeks we got new caregivers, the heat went out in the van and her brother started a job.

I never even thought about how this affects her...except the heat part. I have been so exhausted these last few months. I really did hand her evening care over too quickly. I usually lurk and get in the way for about 6 weeks or so and I set each girl on her own almost immediately.

She is used to coming home and me fussing over her and playing with her from the time she gets home until the time she goes to bed and I'm just someone in the house. I'm really feeling guilty here.

She is not at all used to having to leave at night or in the cold and I've been dragging her along because I've really had no choice. George gets off between 9 and 10 and now Kyler gets off between 9 and midnight. Having to go get both of them, drive a hundred miles or more a day doing it....I'd just bet that's it. She is in bed in jammies tucked in by 830....or she was until both the boys started working. If I had to have the car for therapy or appointments I always left her at home with her brother while I went for the hour trip to get her father and bring him home. Now I'm doing that the cold and taking her with me...after bedtime. Duh Terri.

Abby has her first seizure the day I got home after leaving her for the 1st time last year. We have never been able to make a day of anything. She wants to be home. She feels safe and warm here and everything revolves around her. She hates stores and the public and I'm beginning to think school may be too much for her. She just cant handle being over stimulated and I knew that. Kicking myself in the butt.

The dragging her out stops today. I will be making a trip to get one boy home with her while I have a caregiver then going to get the other one. I have to as long as we have one vehicle. Her Dad isn't going to love having to get off at the same time every night but we have no choice with her brothers schedule.

We are monitoring school to see if the falling asleep and not participating is a common place. She can sleep at home...where she doesn't. I don't really want to do homebound or homeschool. The thought makes me a little nauseous but like everything's about her. I can't do anything else. She has to be happy and comfortable...

Sorry to those I promised to make this blog a happier place. I have no where else to turn

Monday, December 12, 2011

Symbol Communication in Rett Syndrome

We have been brain storming and working on our Communication page for RettGirl to include many of the symbol choices you have in our non-verbal world while trying to find something that works for our daughter's both at home and at school.

So, Kelly Butler and I want to share what we are doing with our girls.

As you know, the same method will not work for every girl and we do believe in the Multi Modal Communication System for Rettgirls.

This, by no means is the answer to everything, we change things up as our daughters learn and as new things are introduced to them.

We thought it might be easiest to show you in pictures. I will start with what Kelly uses with her precious Brooklyn.

As you can see Brooklyn's main form of eye gaze communication is through a plexiglass Eye Gaze Board. I hold it up in front of her and can see through as she makes her choice.
This one is her choice of activities "I want to read, I want to play a game, etc." Depending on which choice she makes, that leads to other questions.
If she chooses watch TV, she then gets options of movies to watch like this. We generally give her four movies to choose from. We hold up the choices in front of her and she looks at her choice.
These are her needs choices - "I'm Hungry, I'm tired, I'm Hot, etc"
We got the alphabet letters that they use in first grade and made boards for that too
Of course she ALWAYS has her yes/no. We do hold them up on the same side. Yes is always on her right


I use a few different things with Abby. After we were denied an eye gaze system I made it my mission to build her a system that works so she can effectively communicate in a way those around her can understand. We started with themed communication boards. (Boardmaker Symbols) and had them laminated.
At meal or snack time we break out this one. She can choose each time she wants a bite or a drink and weather she want's more or is, "all done."
When reading a book we bring out this page. She cant tell us when to turn the page, how she feels and when she is done.
When watching TV we break out 3 boards like this with different shows on them. We also have a no on it so she doesn't have to choose from either page is she doesn't want to.
This is a multi purpose board for many things. More, all done, yes and no.
School Board (class choices.)

When on the road or doing several things we have a book we carry
We started with baseball card sleeves and fit the symbols to the sleeve size

We have a flexible 3 ring binder
Colored seperation tabs by category

I attempted to follow the color coding that the PODD system uses.

Each sheet and section is easy to find
The sheets come with 9 squares so there is separation between each choice if needed

TV page

TV Show choices

We follow the same pattern as the boards so the same pictures are always in the same place whether it be board or book.
As you can also see by her reading page in her book
Bed time routine

These are the laminated YES/No cards we keep everywhere. At school. In her diaper bag,book bag and every room of the house. Yes is always on the left for Abby and No on the right because that is how they choose at school.

It is very important to keep school and home the same in the symbols you use and the placement of the symbols.Also known as the LAMP system. Children who are non verbal motor plan better with consistent placement.

We hope we have given you some ideas especially if you are still in mid fight for eye gaze equipment or have found that mobile picture symbols work better for your girl.

Any of these we have shown here are also a great way to start communicating with your girl.

Please feel free to email us with any questions,comments or things that work for you

Good luck,
Terri and Kelly

Friday, December 9, 2011

Some relief

Isn't she stunning? I got my friends camera working but this one came out a little blurry. This is my Princess in the am sticking her tongue out for a kiss. I love her so much. I often...too often bitch and whine about the life I gave up to be a stay at home Mom to her..but I love it. She gives me more love each day than I had in my entire life before she came along. Who needs stuff when you can have this face?

This is our new caregiver during the week with Abby. They adore each other and she is a huge help to me. Abby just squeals when she comes in and just loved her from day one. She is usually a little leery for a bit but not with this one. Lets hope this works out!

Tuesday, December 6, 2011

One of those moments.

We had one of those moments last night. Just me and her.

We had had a heck of a day. Just one of those crazy busy, sensory overload, Mommy is stressed out days. House is a mess, people are missing or need rides and Abby and I are running around like crazy people. Back and forth. Up and down. Left and right.

It was bedtime, or it was trying to be bedtime. 2 and a half hours later than normal. We were both exhausted and cranky. She laid in her bed fussing while I laid in mine aching. She kept sitting up and yelling at me. Just a standard, cranky po'd little girl. She would sit up, I would tell her to lay back down. She would scream, throw herself to the mattress then sit back up screaming. After about 20 minutes of this I just sat up and said,"Look. I know you're mad and I know you are trying to tell me. I know you don't understand why your words don't come out and why I don't listen. I'm sorry baby but I know you understand me and Mommy said it's time for bed so let's go to sleep and stop all this OK?"

She just looked at me and gave me a huff and threw herself quietly to her pillow. She then turned and looked at me and smiled and stuck her tongue out for a kiss. Just me and her. Both so frustrated but loving each other so much. She was asleep in 2 minutes.

Sometimes I get so busy, so broke, so frustrated with everything that even I forget she's in there. I become this kidomatic. Butt wiper, bather,dresser,loader,feeder that I forget or I don't think about how this must feel to her. Trapped in a body that doesn't work. Relying on a crazy person for absolutely everything.

And yet she still loves me

Sunday, December 4, 2011

A Great Day

Hello all. I certainly don't want to leave my blog open on a note of depression and suicide so I thought I would post tonight before I go to bed. Sorry about my lack of pictures here lately. I broke my camera this summer. A friend loaned me hers that wasn't quite working and it has gone kaput too. I have been trying to get pics on Abby's ipod and my phone when I can but neither will take a very good shot if you move at all.

Today was a day for just me and the kids and it was lovely. We are all always so busy coming and going that we don't ever just spend time together.

Everyone got up early without complaint and we all...minus Dad went to church. ( Actually it's kind of funny because as I sit here talking about my wonderful peaceful day Abby is throwing a major fit and screaming her head straight off over what's on TV.)

We went to lunch with a couple who lives down south part time and we consider Grandparents for the kids. It was nice just to visit and share a meal...seriously I don't get out much.

We went to Zona Rosa and my son dragged me through a very crowded Old Navy store doing the hint parade for Christmas. Luckily Abby didn't mind and we were able to just window shop and talk and tease each other. It was nice. I can't remember a day in a long time where there were no meltdowns, no teenage fits and no me thinking I want to crawl in a hole and disappear.

I have been really watching Abby lately and I think part of her sleeping problem may go beyond the seizure med. I hope it's something we can bring her out of but I think she may suffer from some kind of sensory overload or anxiety that goes beyond what we we previously aware of. She just shuts down pretty much anywhere but somewhere she is very familiar. She either sleeps or goes into her own little world. No eye contact, no smiles. I have her Neuro's trying to get in touch with each other so we can try to get something figured out on the med end. All but one parent I have spoken to absolutely insists it's the medicine we have her on so I guess we will see. My only issue is as soon as we get home...she's a happy camper...awake...alert. Gotta be more than the med ya know?

Well we are in the middle of meltdown central....what I get for being at peace. JINX!

Saturday, December 3, 2011


Depression is defined as:feeling sad, blue, unhappy, miserable, or down in the dumps. Most of us feel this way at one time or another for short periods.

True clinical depression is a mood disorder in which feelings of sadness, loss, anger, or frustration interfere with everyday life for an extended period of time.

This week Kansas City lost local weatherman, Don Harman, who took his own life...seemingly out of the blue for those on the outside. We have sat this week and watched his co anchors and colleagues struggle through, cry on air and attempt to raise awareness. I for one am very proud of them. No one on the outside would have ever fathomed that that hilarious weatherman on the morning show was depressed enough to take his own life. His coworker blogged that he had somehow convinced himself that everyone would be better without him. I am so proud that they didn't try to cover it up and on a campaign to bring understanding to Depression. More people suffer than anyone knows.

Unfortunately all too often suicide seems the only answer to those of us struggling. Those who do not suffer are in absolute shock and distress when something like this happens. Even I went,"Why would Don Harman kill himself? He's the happiest little guy in the world." That was before I heard he suffered from depression. When that came to light I thought,"Well damn. Got another one. Sorry Don."

I suffer from Depression..true,clinical, mood disorder depression. I have for a very long time. I think it runs in my family genetically but for me there are many reasons above and beyond that have turned me into who I am and how I feel that I do not care to share at this time.

When it first started my son was very small. I can remember always being asleep. If I wasn't working or taking care of him I slept..Slept so I didn't have to deal with the sadness. The feeling of impending doom. Nothing matters, all for nothing. It was a feeling I just couldn't shake. I went to the doctor because I thought I had Mono. She told me I was depressed and put me on a medicine. A few months later I realized I wasn't sleeping all the time anymore so I stopped taking my medicine. Within a few weeks I was back in bed...back to doom and gloom. It took me years to figure out that I needed medication. That there was a link between the meds and the doom and gloom. I kept trying to convince myself that I was strong enough. That this thing was just something I had to get over. That I needed to stop being a wimp.

Off and on during this I slowly started to have panic attacks. Episodes that would appear out of no where. I would suddenly and without warning get dizzy and have vertigo. The lines in my vision would blur and I would hyperventilate and sometimes even pass out. If I couldn't get somewhere safe where I could be alone until it passed I would go into terror like episodes where it felt like I was losing my mind. Right there, right then. I could be walking through the mall, standing in line at the grocery store...driving down the road.

When my Dad passed away at 56 I lost it. Panic attacks and my bed became a routine..even while medicated. I went about 2 years where I could go to work and home and that was it. Even the thought of going to the store made me want to throw up. It was no way to live and I didn't know what else to do.

One day... I couldn't get the thought of just ending it out of my head. I had thought about it in the morning while I looked at my cabinet full of meds. I thought about it on my way to work...flashes of my son laughing, my Dad, my husband. I was so out of it that I answered every question with a confused, "What?" all day long

I had been married about 3 years. Wasn't what I had dreamed of. My son was entering his tweens. I had lost my Dad and my career that year due to cancer and a layoff. I was working at a job I hated for a person..that was just plain mean. In ever way. Vicious. I couldn't take any more.

I remember it almost like an out of body experience. I walked out of work at 5pm without saying a word. I started my car and started home. Right after turning East on the highway I saw a semi trailer truck. The only thing I thought at that moment was, " How fitting" as I crossed the road into his lane. I closed my eyes and hoped it would be quick. I cant tell you what happened. I didn't hit him. I ended up in the median turned the other way. I had heard honking. He didn't hit me. I didn't hit him and everyone just kept going. I sat there for several minutes confused and finally just turned the car around and went home. I had left no note. I had made no plan.

Still in my daze I returned home. I wasn't relived that I was alive. Frankly I was kinda pissed. Still in my daze I walked in the house, past my family and down into the basement. I laid on the floor for a very long time and cried. I finally got up and called the local help hotline. I was connected with a therapist and scheduled for a meeting with a counselor the next day.....

I have to admit that at first I hated counseling. I didn't want to talk and cry in front of someone I didn't know. There was NO way I was gonna talk to that pillow and pretend it was me as a little girl. Did she really want me to pretend that pillow was me at 8 years old? And she wanted the grown up me to tell the little me it would all be OK. I refused and she realized she had to get tough with me.

She started to finish my sentences. I would describe how I felt about something and she knew what I was going to say next. She too had suffered and overcome depression. Wow. She became my example. She told me what to do when the panic aura started and it worked. I could go to the store again. Soon I could even drive more than a mile or two at a time.

Just about the time she was signing off on my case I became pregnant with Abby. Everything was going to be OK. I felt normal and was moving on with life. It can happen...little did we know

What I am trying to say is depression is everywhere and it isn't just a poor me thing to get attention. I know that is the stigma it has gotten but it is far from that. It is something deep and tormenting and sometimes like living a nightmare with a smile on your face.

Like Don...I have been described many times as one of the funniest people you know or who have ever met. It's a laughter through tears kind of thing. A defense mechanism. That self deprecating humor comes from fear of rejection or from being made fun of. My thing is making jokes about my size. Maybe if I do it you won't. It comes from being bullied and self conscious.

If you suffer from depression or from feelings of hopelessness or really are not alone. There are people that can help you. Can't afford it? I've never paid a dime for anything other than my meds that you can also get discounts on at almost every pharmacy.

If you are thinking of hurting or killing yourself PLEASE call 1-800- SUICIDE

If you are struggling and need to talk to someone who understands, call 1-800- WARM EAR or 913-281-2251

If you need more information or a referral, please call Mental Health of America at 913-281-2221

No matter your financial situation, there is help available. Please seek help if you or someone you know is suffering

Thursday, December 1, 2011

Crazy, Busy and more

Hey all. Sorry about the time between posts lately. We have been crazy busy and on the run every day.
This week Abby has or has had 7 appointments, her Dad works all week and her brother finally starts a part time job today. I haven't had much time outside of driving Daddy back and forth so we can have a vehicle to get to all the appointments. Hey...On a good note the heat went out! Not!
Monday we took Abby to the dentist for a few reasons. It was time for her regular check up but we are also concerned that she hasn't lost any teeth yet other than the ones she has ground down. Unfortunately because of her disorder and the nature of it we cant give her any kind of guard to help. The choking hazard is too great with her being unable to speak or use her hands to take it out. We have hoped to send her teeth to a lab to turn into stem cells as they come out so we are hoping by the time that comes there will be anything to send. On a good note No cavities!
Tuesday we had swim therapy and she did very well. She had kind of shut down on us the last 2 swim therapies so we pretty happy. Although we don't believe she learn to swim the therapy is great for her tone and awareness.
Wednesday we had a trip to the hospital for assessment for her back brace. Even though Chiropractic and massage therapy has helped tremendously we are going to have to brace her to keep her from getting any worse. She is a big leaner as comes with Rett Syndrome. The brace will help with that. We were surprised to learn that the brace doesn't correct, it just keeps the curve from progressing further.
She has Chiropractic and Massage both this afternoon and I'm hoping to discuss future plans with them. We are paid until the end of the year and if we can't get donations to last until we get our tax return in spring we are hoping to be able to work out some kind of payment plan. Fingers crossed.
On a couple of good notes the new caregiver seems to be working out. We have a few kinks to get through but nothing serious. She shows up on time and she gives me some much needed respite. On the weekends we now have another caregiver on Saturdays. I took advantage of that last Saturday and actually went and saw a movie for the first time in a year. I cant believe I went almost a year without help. I'm paying for it with my back problems but so grateful that we have started up the service again.
All for now. Off to take each of the boys to work. Yeah!!!!!Finally.