Speech Training

For those that aren't aware, we flew in a specialist, Susan, for 2 days to work with Oaklynn. She has worked with over 300 Rett girls to teach them how to communicate. Also teaching them how to read and write as well as teaching the parents and school the best way to teach us and help us learn.

It was 2 of the best days ever. It was much better than I could have ever expected. Watching Oaklynn have full conversations was amazing! I can't even put into words everything we got out of it so here are some videos.

Before this video started Oaklynn's at home Occupational Therapist, Renee, had just walked in (that is who you hear talking). Susan wanted to have Oaklynn talk about the music they just listened to but as you'll see, Oaklynn takes over her device and decides she wants to tell Renee about something else. You'll also notice that there are times when Susan touches her device, it talks. She is modeling words for Oaklynn. So when you see her hand at the device, Susan is modeling but all other times, Oaklynn is talking. Pay attention to her eyes and her smile. This is what I mean when I say that Oaklynn speaks with her eyes.

We later realized that Oaklynn was saying "I'm Sorry" at the end of the video because Susan had the wrong book. She was telling Susan she was sorry that she chose the wrong book, lol.

This next video continues with the conversation. You can see how excited she gets in this video because she wants so bad to tell Renee about the story.You'll also notice that because of her apraxia, she has moments where she needs extra time to answer. She knows what she wants to say but can't get her body to respond. So she needs extra time to work through things and then comes back and is able to respond.

Next video continues with the conversation...

That was one of my favorite conversations from those two days. She was so excited about the book and did so well explaining it to Renee.

Now you'll notice in this next set of videos, Susan places her computer in front of the eye gaze. She took it away so Oaklynn could have a break (it's a lot of work to use your eyes to talk). So now she is going to work on Oaklynn using her eyes to communicate without her talker because she wont have it when we are out and about. 

This next video continues with the conversation. You'll notice that when she makes eye contact with Susan she is responding with a "YES" and when she turns her head away and is responding with a "NO".

She was so quick at responding, it was amazing! 

We were so proud of her and how hard she was working. She was so excited to use her talker and her new pages. The next day we worked at the school. I will post video taken while working at the school in another post.

Another attempt at normalcy

This post is from my good friend Shelley. She is a Rett mom to her beautiful daughter McKenna. This post brought me to tears as she describes it so well. The pain and heartache knowing that nothing will ever be "normal". Thanks for sharing with us Shelley!

A letter to the mom in the dressing room next to me...

Today we both had a special day... Shopping for prom dresses with our senior daughters. Maybe it was rude, but I couldn't help but listen in on your conversation. I heard you and your daughter laughing. I could hear the love in your voice when you teased her about the slit in the dress being a little too high and the neckline being a little too low. I heard her call you mom, but I knew you were more like friends. I could even hear your oh so subtle gasp when she walked out in that form fitting black dress covered with sequins. I'm not surprised... I think I gasped too. She looked incredible! As much as I wish it weren't true, form fitting dresses and round tummies with feeding tubes do not go together. So the dresses we were trying on were big... gypsy worthy big! I was crouched on the floor trying to keep my daughter from falling over because her scoliosis keeps her from sitting up straight when she's tired. I could see you and the proud way you looked at your daughter. I watched you and your daughter through the gap in the curtain. I envied you. I wondered if you ever think about how very lucky you are? You see, even though it was a special day, it was also a very emotional day for me. Another milestone event that I am losing out on. I will admit, shopping during the dinner hour on a Wednesday night was probably not one of my best ideas. While your daughter twirled in front of mirrors, my daughter sat on the floor of the dressing room rubbing her eyes and falling over. I put huge tulle dresses over her head, but then I had to attempt to stand her up if I had any chance of getting the back zipped up. I had to keep her towel close by because taffeta is not very forgiving when it comes to drool. I pretended I was having fun both for my daughter's sake and for anyone listening in on our one-sided conversation. If they had any pity for me, surely my over the top excitement and fake smile should dispel any myths. I narrowed it down to two dresses and even though I held both dresses up for my daughter to demonstrate her eye gaze skills, she wasn't interested in the least. I picked the white and aqua dress, not because I liked it the best but because I thought maybe, just maybe, if my daughter could talk, or walk, or use her eye gaze skills... That would be the dress she would choose. I also used my infallible decision making method of eeny, meeny, miney, moe... I figured I had a 50/50 chance of getting it right, unless she didn't like either. Who knows, maybe she doesn't even want to go to prom. I heard you joking with your daughter about doing extra babysitting jobs to help pay for the dress. As I handed the cashier my credit card, I was more than willing to pay an absorbent amount because I reminded myself that I'd never have to buy a wedding dress. I drove home, fed my daughter, and got her ready for bed. The dress is still in a plastic bag hanging in my van. The dress... Another attempt at normalcy. Another reminder of how much has been taken away.

Anniversary

Today is our anniversary of D-day (diagnosis day). It marks 3 years since we have had the diagnosis of Rett Syndrome. I remember it all too well. The pain, the heartache, the grief, and the feeling that I couldn't breathe. Today is a day to reminisce on the things she use to be able to do. Not to grieve, but to have hope that a cure will come and she will regain all these skills again. The waving, holding things, feeding herself, pulling to stand, crawling, walking and talking.

A year after she was diagnosed, I ran my first half marathon ON her diagnosis day in honor of her. 

The next year I couldn't run as I was pregnant. So my friend ran in honor of her daughter, Melia, and my Oaklynn.

This year I wasn't able to run or even make it to the run. So I want to find another way to make this day a positive day instead of a negative day. I would love to turn this D-Day from a "Diagnosis Day" into a "Donation Day"! If you can, please PLEASE donate to Rett Syndrome Research in honor of Oaklynn. I can't even stress how close we are to a cure. Any and all amounts are appreciated... even if it is $5! Please share our page and ask others to help me make today a positive day for us. Go to www.GP2C.org/Oaklynn and donate there. Thank you all for all your support and love and for helping me change this day for the better.

The second wave of grief

It's been hard lately... really hard. Oaklynn use to be a typical child. She use to walk, talk, feed herself, play with her toys... do everything a typical child could do. Rett Syndrome hit, and she lost all of that. But to me, she was still the same Oaklynn. She still had her fun, silly personality and her witty humor. She still looked like a typical child until you got to know her a little more. Then you realized she had special needs.

Lately, it is not like that. Rett Syndrome has trapped her inside her body so bad that some days, I don't see my funny little girl. I see a little girl who screams, yells, pulls her hair, has seizures, can't control her body... and it's so hard. She has so much medical equipment that she now looks like a special needs child at first glance. Don't get me wrong, it's not a bad thing to look like a special needs child. My daughter didn't come to me as a special needs child, she came as a typical child. I got to see her as a typical child. I got to see her sit and walk with no medical equipment. So to have her change so much and now see her be surrounded by some kind of equipment at all times, it's hard... really hard! Some days I feel like I got the Rett Syndrome diagnosis all over again. The emotion and heartache hits me really hard lately. I find myself of the verge of tears, or crying in public, a lot lately. I think about those days where my little girl had control of her body and her words. I look at her now and see her yelling to get out. Trying so hard to break free of this broken body and be a little girl again. It's been so hard having so many Rett girls passing away and knowing that if a cure doesn't come soon, that will be her.

I often wish I was warned about this second wave of grief. When she was diagnosed, she hadn't completely regressed. The grief was of what we would loose and what would happen to our daughter. I have just hit the second wave. The part where the regression is over and she has lost everything. That part where we are now living what we feared when we got the diagnosis. The anxiety, seizures, scoliosis, breath holding (where she passes out), GI problems, constipation, G-tube, tremors, screaming fits.... etc. It breaks my heart in a million pieces and I hate going through this grief all over again.

I am so grateful to the friends who have reached out to me to tell me they are thinking about me. These people have no clue what I have been going through but they felt the need to reach out to me and I am so appreciative of them in my life right now. This diagnosis is hard and this life is harder than I ever imagined.

I do have to say that I am so incredibly grateful for Oaklynn in my life, she has taught me so much and she is one of the sweetest little girls I know. I wouldn't give her up for anything in this world.

I am often contacted by moms whose daughters are recently diagnosed and have found me due to my blog. I want them to know about this second wave of grief as I wish I did. So to them:

You will grieve now... a lot! You will be scared of what is to come and you will be so incredibly sad. You will come to terms with Rett Syndrome and that it will be your life. Just know that most likely, it will hit you again (and maybe even a couple more times). When the regression is over and she is trapped inside her body, you will grieve all over again. If this happens, I am here for you. I know how you feel. I wish I could throw my arms around you and cry along with you. Rett Syndrome sucks, but you aren't alone.

Blue Sky Girls Speech

Today I got to address a large crowd and talk about Rett Syndrome and my view of it as her mom. Here is my speech...

Good Afternoon. My name is Whitney and I am Oaklynn’s mom. She was diagnosed when she was just 21 months old. That was the hardest day of my life. I didn’t know anything about Rett Syndrome so I got online and I googled it. This is what I came across while researching it.

Rett Syndrome is a rare genetic neurological disorder that almost exclusively affects 1 in 10,000 females. It strikes at random in early childhood. Most babies with Rett Syndrome seem to develop normally at first, but symptoms surface after 6 months of age. Many girls live into adulthood, requiring total, 24-hour-a-day care. There is no treatment beyond supportive measures such as feeding tubes, bracing, orthopedic and GI surgeries, and medications for anxiety and seizures. Symptoms include Loss of speech and motor control, functional hand use replaced by compulsive hand movements, disordered breathing, severe digestive problems including constipation, orthopedic abnormalities including scoliosis and fragile bones, disrupted sleep patterns, extreme anxiety, seizures, impaired cardiac and circulatory function and Parkinson-like tremors. About 50% of individuals affected do not walk.

I continued to research it and kept coming across the same stuff. Telling me what my daughter will never do. The medical problems she would have. The hardships she would face, how hard my daughter’s life would be and essentially how hard my life was going to be caring for her. It was tough. After reading this I cried for days.

It wasn't until a week after her diagnosis that I stopped researching Rett Syndrome and decided to stop focusing on what the medical books told me my daughter wouldn't do and start focusing on what she can do and enjoy each and every day I was able to spend with her.

I remember when she was about 2 years old I sat on the floor with her and decided to have a conversation with her. Knowing she couldn't talk and wasn't going to talk back to me, I still decided to talk to her and ask her questions. As I started talking to her I saw a sparkle in her eyes. I noticed something I never saw before. She was actually talking to me with her eyes. Her expressions changed and there was this sparkle I had never seen before. As time went on I came to realize what an inspiration she was. She was strong, determined, and happy despite everything she was going through.

There was so much about her that I found out while being her mom that I didn’t read about online when googling Rett Syndrome. These girls are so amazing. They are strong, courageous, inspirational, and despite everything they go through, they still put a beautiful smile on their faces. They are just like any girl their age, just trapped inside a broken body.

I know that one day we will have a cure. We will gather in this same spot and these girls will be running up these stairs, standing where I am standing, holding this microphone and thanking each and every one of you for your support, encouragement and for believing in them

New Sibling

We wanted to introduce our newest addition. Oaklynn loves her little brother and she is such a good big sister!

Meeting Clint Black

Oaklynn got the chance to meet Clint Black! If you haven't heard of him than you must not listen to country music. He is an awesome singer that I have listened to since I was little. His niece passed away from complications due to Rett Syndrome. He has been supporting and raising awareness for Rett Syndrome ever since. 

A rett mom here in Arizona reached out to his team and asked them if some of us Rett families here in AZ could meet him before his concert and after much convincing, they agreed!

There were just 6 Rett girls and their parents so it was a nice small group. We all got a chance to take a picture with him and then I got the guts (thanks to my sister Briene) to ask him to hold her. I am so glad I did because I got some great pictures. She reached her back arm up and put it around his neck to give him a hug. He leaned in and hugged her. 

We had so much fun and he was so nice. I wish we could have stayed for the concert though, that would have been fun.

Making Choices

A lot of people have been asking about Oaklynn's eye gaze device. She has the Tobii I-15. It looks like a regular computer monitor and it has a device on the bottom that tracks her eyes. When she looks at a picture for a certain amount of time, it speaks what she is looking at. She is doing REALLY well at starting to navigate through pages to let us know what she wants and she has only been using it for a couple months.

Just today she woke up from nap at 1:50pm. We usually eat lunch at 2pm but today we had speech therapy at 2pm which meant that she needed to wait to eat until after therapy. The therapist came in and Oaklynn's first word with using her device was, "HI". They then navigated through the device to do some work and learn some more pictures. When Oaklynn was asked if she wanted "more" or to "stop" (doing the current activity they were doing together), Oaklynn responded with, "Eat... Eat". I said, "yes, we should be eating now and you're probably hungry. We will eat as soon as therapy is over." Throughout the session she started not only saying "Eat" but then started saying, "Eat... Hurt... Eat". She was trying to tell us her stomach hurt because she was hungry. I got her a snack to eat during therapy and she smiled right away. Then when therapy was ending Oaklynn said, "drink".

I was so proud of her because everything was right on cue and so purposeful. She knew what she wanted and wouldn't stop asking until she got it.

Here is a video I took of her using it. I asked her what show she wanted to watch. If you see the blinking lights at the bottom of the device, those are used to track her eyes. She rocks and moves a lot so it can take her a couple minutes before she can make her body still enough to make a choice. This time it took her just under 2 minutes. I shortened the clip to show you just the part where she makes her choice.

You will notice that I ask her if she wanted Sesame Street after she made the choice. I do this to verify that was what she really wanted. As you can see in the video... it was clearly what she wanted.

I have sat down and used the device before and it is hard work. Using your eyes to navigate through pages and make choice makes you really exhausted! You would think it would be easier than using your fingers to choose things but it is not. I am SOOOO proud of her for all the hard work she does. She is my super star!

Button panick

I sat Oaklynn down in her "happy chair" to watch some Mickey Mouse in her room before her Occupational Therapist got here. Therapy came and she left Oaklynn in the same chair to work on eating and playing with some other things. About 40 minutes into therapy, the OT stood her up to move her to another position and when she stood her up, she noticed that a button (g-tube) was sitting on her chair. 

We have an extra one that a friend gave us that was put in a baby doll so Oaklynn could have a doll just like her. So when she grabbed it I just figured it was the baby dolls. Then I thought that we should check her stomach just to make sure. When lifting up her shirt we noticed that hers was missing!! She just had this little hole in her stomach and NOTHING occupying it. I started to panic. Luckily the OT was there so I tried not to look too panicked on the outside but my heart was beating SUPER fast. 

When you get the surgery, they warn you about how serious it is if the button falls out and how you have to immediately stick the replacement back in quickly so it doesn't start to close up. So I am in panic not knowing how long her button has been out of her stomach since she had been sitting in that seat for quite a while. In my mind I am thinking I am going to have to head to the ER and get the surgery done again. I asked the OT to lay her flat on the ground and watch her while I went to get her another button. I grabbed everything I needed to change her button and ran back into her room. I got the button ready to put into her stomach. I closed my eyes and took a DEEP breath to try to relax myself (kinda also said a silent prayer at that same time). I slowly put the button into her stomach and she was tightening her stomach so I was having a hard time getting past her muscles and into her stomach. I kept wiggling it around and in it slipped!! I looked up at the OT with big excited eyes and said, "It's in!". I smiled, filled it with water and sat her back up. Of course Oaklynn was all smiles the whole time. None of it even phased her!

I checked out her old button and the "balloon" that is filled with water that is inside the stomach had popped. For all I know, it could have popped a day ago but the button didn't fall out until during OT. It was a huge blessing that I didn't discover her button missing while I was alone. I am SO grateful the OT was there with me.

Since her surgery (1 year ago) her button had only been replaced once. I was the one who changed it out, but I was in the doctor's office with her telling me what to do. Just the day before this all happened I had told Austin it was about time to change her button but I wasn't ready to do it without the doctor so I was going to schedule an appointment. Now I am for sure ready to change it myself... I'm ready and not scared anymore. Nothing (that has to do with her button) can scare me after that.

Who will take my role?

Have you ever thought about what would happen to your children if you passed away?

What would happen if both you AND your husband passed away?

I am sure it has crossed your mind before and you may even have a will written out in case that has happened. Or you may not have a will, but you may have at least asked a couple if they would be willing to take your children if anything happened.

As a special needs parent, we think about that quite often. It's a fear that our child wont be well cared for if something happens to us. We know our child very well and all of their needs and wants. Many of us can know what our child will need by a small moan or a quick look. Some of us may be able to fulfill their needs before they even need to ask. Or sometimes there is no way to console our child but we know ways to comfort them while they scream or things to do to ease the pain. Many of us often worry that no one will be able to care for our children the way that we do. Some of us even worry that no one will want to care for our children.

Before Oaklynn was even born, Austin and I had dinner at my sisters house. We asked her and her husband if they would take our kids if anything were to happen to us and they happily said yes! Well, Oaklynn got the diagnosis and life has changed for us. There is no way I can now approach that same sister and ask, "You're still OK taking our kids if something happens . . .  right?" Caring for a special needs child is different than caring for a typical child. I would never want to ask her and have her feel obligated to say yes because if she says no then she may seem like she doesn't love my children (though I wouldn't feel that way at all).

I had a couple other sisters sit me down and tell me that even though Oaklynn is special needs, they would love to take her and my other children if anything happened to us. They explained that they knew what they were getting into by offering, but that they feel like they would be able to take the responsibility and they would feel blessed to have her in their family.

I got home and started crying. As a special needs parent, it is not easy to ask someone to care for your special needs child (and their siblings because it isn't fair to split your kids up just because they are different). You don't want the person to feel obligated to say yes. They do say yes but they really do not feel comfortable to take on such a task, they just don't want to hurt your feelings. As the parent, you want to know that your child is going to be with someone who understands what they are getting into and is willing to take on raising your children no matter how difficult the days may be with a special needs child.

So what I am getting at is that I want you all to think about if raising a special needs child is something you could do. Then think about someone you know (maybe a sister, cousin, aunt, friend, someone at your church . . . . ) who has a special needs child and think about that child and their needs. Put yourself if their parents shoes and think about if raising them is something you could do. If so... TELL THEM! You may think, "they have a big family, I'm sure they already have someone who offered." But don't think that way because you never know and you may be that person who the family has been waiting for!

It is so much easier to have someone come up to you and let you know they are willing to take on the parental role. That way you know that they really would be willing to then having to ask someone who you worry they just said yes so they didn't hurt your feelings. Or if someone asked you to take their children before they had a special needs child and you said yes before, re-assure them that you still want to raise their children if something happens to them. And if not, then be honest and let them know that you don't feel like you could raise a special needs child. I guarantee they will not get angry but be happy that you spoke up.

No matter if you are a special needs parent or not, we all want to make sure our children are well cared for if something happens to us. It's just harder to find someone to take that role when you have a special needs child. So help us out and speak up! Let us know if you are willing to do so. . .  it will help give us one less thing to worry about.

Typical moms. . . what would be a concern or worry about approaching a special needs mom about taking on her role if something were to happen?

Special needs moms. . . Please share how you would feel if someone approached you and offered to take on your role.