A new friend Mary-Jane

Over the past 5 years or so our daughter has been increasingly suffering with a  condition called Dysautonomia. Another rare and complicated disorder that leads to minimal doctors of understanding how to treat her. Being as stubborn as I am and following my gut. I kept pushing through those doctors that blew me off, those that looked at me like I was nuts and those that simply said it’s part of Rett.  I even mentioned numerously to many doctors I suspected “autonomic issues”.  But, I got no where.  After excruciated years of thinking to my self, am I nuts?  And many nights of crying to my husband or quietly while everyone is in bed. I needed answers!  It was a connection with another Rett mom that we started to lean on each other and got confirmation that my gut  was right. Finally; we traveled to Minnesota to see a specialist in Dysautonomia he stated “she has it severe, so bad she needs a rescue med”.

Now mind you, our gal didn’t have any restrictions on any activities and has really grown in the past 4 years in wanting to get out of the house and be apart of her community. Then the severity of Dysautonomia set in (really the past year and 1/2 or 2 years it’s gotten severe) and activities now are limited.  There were days this summer she stood in our bay window looking outside, it broke my heart. I simply had to tell her it wasn’t safe for her to go outside it was too hot.  I know she didn’t get it, as she loves the water and loves to be outside. But, as soon as we try she has a seizure like episodes. She is completely standing up and all the symptoms start to show and she falls backwards like a domino, all 98 pounds of her. You can’t let her out of your sight.

Her systems are clear. Red face, frightened look-almost panic and she would even grab onto something when she was walking. Watching her know that something was off.  And then as they intensified, her hands got sweaty, her body stiffened and sometimes even collapsed.  At times she would cry/scream afterwards. I would tell her I would be angry too if this was happening to me. Seeing this over and over again at a variety times of the day was heart-wrenching and to be honest I was scared for her.  All I could do was comfort her. To tell her I’m here and to tell her she’s okay.  It eventually subsided till the next one.   I started taking data and have several years of it for various aspects of her health.  Noticing that heat triggered something-but more like the humidity. When it’s severely humid she has “autonomic seizure like activity”. It has become even more complicated now as doctors are unsure if it’s epileptic seizures, dysautonomia triggered seizures or both.

When I walked into that appointment (which was not an easy task to accomplish) and was asked what meds she has tried over the years. I pulled out my printed list of dates started, dates ended and the affects we saw. The doc was shocked. He stated oh my-she definitely has tried quite a bit.  Then we got to the check list of symptoms.  Inflammation? Oh yea she has celiac.  Seizures? Which kind?  Anxiety? the girl doesn’t stop crying sometimes and gets overly stimulated.  Depression? yup I would say so as her disabilities come with so many challenges who wouldn’t be depressed.  Sleep issues?  Doc we haven’t had a good night sleep in probably in over a decade!  He looks up and chuckles-well she qualifies for Medical Mari-juanna 6 times over!

I was at my wits end of trying so many drugs on her and she clearly couldn’t take it anymore. We had several specialists looking at her and we are talking top notch folks. And they were all stumped and still are.  Finally; on a recent visit I had to share that we were starting a new regiment and it wasn’t anything they suggested.  2 doctors out of all her specialist seemed relieved in a sense. They are hoping the same as us-that this little bud and all it’s possible benefits help in some way. We are grateful for them as it’s nice to know there are some doctors out there that truly want the best for their patience, even if it’s not standard practice. And to respect the parents decision.

Now, I know I might jinx myself. The Rett community will get this-but once I put certain words in the universe than our good fortune will stop.  So, let’s just say the decade I mentioned above has had a breakthrough since introducing THC.   The lack of anxiety was the first I noticed with her. Gosh what a difference with just CBD oil for a few months.  But, we are seeing all good things with her.  She’s on the lowest dose of 1:1 possible right now. And there are tricks I’ve learned to help her mid day.  Her episodes that docs are stumped on are subsiding or lessened so far.  The most intriguing recently was she was having clusters of these episodes (these are not often and not a norm for her). We don’t have a rescue plan for it because well-docs don’t know what they are. Nothing has been captured on the gazillion EEG’s she has had. I placed a tiny drop of oil (literally a little bigger than a spec of pepper) on my glove of pure rescue THC when she was having these clusters and inserted it into her buccal. The clusters immediately stopped. And didn’t return.  My husband and I couldn’t believe it!  We were relieved too and so was our gal. We are still working on finding the right dose for her in hopes she will have the best quality of life with minimal interruptions.

All because of her new friend Mary-Jane. 

 

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sleep issues

Whoa! I’m back 2nd day in a row- I KNOW I’M SHOCKED TOO!  Our night was pretty quiet-other than her having a seizure before bed.  It wipes her out, even the 30 second ones. Glad my hubby was there to catch her. She’s heavy at 100 lbs.

But, today I will be  talking about sleep or the lack of. For years our girl would go to bed around 7:30pm and wake up around 5:30 to 6am. Sleeping without her waking up or screaming, oh how I long for those nights. Those days I felt I can really function.  Till the day I googled her mutation R306C on the MECP2 gene. I read “sleep difficulties”. Then years of lack of sleep began…..

When you are sleep deprived you are agitated, mad at the world, you get to a breaking point that you can’t even take it anymore.  It can be downright dangerous, particularly when it goes on for years. My husband and I both worked at this time and we would tap each other in bed saying “your turn” when she awoke. It was not uncommon she would be up at 2:30 and 3:30 am for hours! Then of course; when the alarm goes off for the day to actually start. She was ready to go back to sleep. We tried everything-put her to bed later. Fed her a bowl of cereal or something before hand, bathroom trips, weighed blanket, essential oils, medications, soft music, reading, we would take turns to sleep with her. Sleeping with a rotisserie chicken as my friend describes it perfectly,  it is not restful and actually can be painful as limbs fly and you dodge them all night.  Needless to say; my hubby and I walked around like zombies. I honestly; don’t know how we do it sometimes. We’ve gotten into arguments because we were just both so irritated and mad all the time due to sleep deprivation. There were times that he would say he “almost fell asleep at the wheel”. He drives for a living so it’s not an option not to do his job on a daily basis. I drove too. Something had to change for the well being of the family. The hardest part was her hours of waking varied, some days it was all night- up and down and others not so much. Going to bed earlier sometimes worked for us. But, not when she was up several times in a night. She would scream as if something was wrong. Painful almost or nightmare like.  There was night’s after night she would scream nonstop! It’s a guessing game and you try everything to just get her back to sleep. The real trouble for her is lack of sleep is her definite trigger for seizure increase. The only thing we’ve found that works lately is to have her walk around. Particularly; my husband will make her take our stairs up and down in the middle of the night. In hopes to exhaust her out. Also, she is semi-toilet trained so if she gets the urge to need to go. Then it wakes her up and the vicious circle of begging almost to go back to sleep occurs.  The tv became a big problem. Covering it up with a blanket that was close to the color of her wall, worked great at night! It literally disappeared.  But, there are times that she gets into a funk or we do and plop her in her bean bag chair (really to trap her) and turn on a slow quiet movie to make her fall asleep. These days were more often when she was younger, not so much now.

Now, before you think to yourselves, did this family do sleep studies? EEG’s for seizure activity? Remember she’s 16 years old and has been followed by a Rett Clinic since 4 years old. Boy oh boy has she had her fair share of those tests and then some. The challenge is things are not always captured at the moment you are all wired up or recordings are happening. Rett is so complex and so unique to each girl or boy. Yes, boys too have Rett Syndrome but mostly our little ladies do. It’s not uncommon for sleep issues to arise. It’s just chalked up as part of Rett Syndrome.

The past few weeks she has been doing better. There are times if she is overly tired she won’t sleep either. So, finding that happy medium is down right tricky. Keeping my fingers crossed that I didn’t jinx us on writing this down.

 

 

Rett Syndrome Awareness

October is Rett Syndrome awareness month so my focus today is just that-bring awareness. What you read are my personal views on Rett and the struggles that we’ve had lately.

Madasyn is 16 years old now and yet we are going through another abundance of changes. Not only is she back in her school district, but she has had more medical challenges since last year that have really scared us as a family.  I’ve had to leave my full-time job because she needs a case manager in all aspects of her life.

Living with Rett syndrome or a complex disorder is something the average person doesn’t understand. No parent that loves someone with the diagnosis of Rett chose this life. We absolutely don’t want to belong to this exclusive club. However; our daughters and sons make us better people, because of who they are- not what they have. Because of the  Rett community,  I wouldn’t be able to be as knowledgable or have the guidance I need on those desperate days when I’m looking for something to help my girl. There are days I’m completely lost.  So, thank you to my army of mothers and fathers that help me out. But, mostly much love to your loved ones that fight this devastating disorder regularly along side my girl.  I couldn’t do this without you. [[HUGS]]

Last year, about this time Madasyn started having an increase in seizures and what doctors like to say “A Rett thing”. But, in hindsight that means-we don’t know. It’s scary to think that medications are pushed onto our girls/boys because that’s what has been known to help….for most individuals with Rett.  As, parents we rely on the medical experts to help our loved ones. But, not all our girls/boys are the same. Overtime, Madasyn has proven she can’t handle medications like most. As, a parent there is a time you get fed up and say that’s it-enough is enough. That realization came to me when I was constantly called into the school on a regular basis. Today she has been weaned off 2 medications as they had significant side affects that wouldn’t allow her to function to the best of her ability. And she ended up in the hospital for 8 days.

She had lost so much school last year and started late this year due to her complications arising. Around 4:30-5:30 am she would wake up and I would get her stretched, bathroomed, fed, medications, teeth, face, hair, dressed and pack up all her belongings for school. Packed up her communication device, her lunch and snacks (she has celiac), her back brace, if there was hot days send in anything to keep her comfortable and cool. Right before the bus comes I would read her social story about being safe on the bus and how to get off safely. And then load her on the bus tell her I love her. To rush back inside and give my self a 1/2 hour to get ready to head to work that was a good 35 minutes away. Throughout  the day I would talk to my hubby and we would determine who would make it home first to start dinner for 5pm. My husband also works full-time and averages 50 hours a week of manual labor. We both were going downhill fast. Not only from the stress of Mads daily medical needs, but emotionally as a couple. Our world was a circus a constant juggling act. In December of last year after taking 12 weeks of family medical leave I left work permanently. It was a tuff decision.  I stay home now with Madasyn. I train the 4 new personal care attendance we’ve hired, 1 new skills trainer for her grant she is on through the state and take her to 3 therapies a week and any extra curriculum activities.  With all the while going back and forth to school, emailing on trying to help a new team understand Madasyn’s needs and build a school program. It’s definitely a full time job. But, since I’ve been able to really observe her and use my resources she received a third diagnosis of Dysautonomia. It’s another rare disorder that in my heart I’ve been seeking for years….but wasn’t sure what it was. My heart sank finding out this diagnosis. It was like hearing about Rett all over again.

It mimics a seizure you see, her face turns red if she is walking she stops and grabs on either to a piece of furniture nearby or someone. It’s devastating to watch. Her face is full of panic and fear. Sometimes her body gets stiffs and she falls backwards in a passing out motion. She can feel something is going on but doesn’t understand it. Nor do I. It only lasts on an average 20-30 seconds but, when it does it seems a lot longer. Sometimes they come in clusters.  I feel her palms of her hands, they are sweaty. She’s alert-so what the hell is it?  Well, after 4 years we got the diagnosis of Dysautonomia. I’ve been asking about it for 4 years and her Rett docs never addressed it-I simply feel because they considered it a “Rett thing”. Now don’t get me wrong I’m grateful to these doctors for emerging themselves in the Rett world and grateful for them learning all they can. We wouldn’t of been able to help Madasyn on most of her Rett challenges over the years.

This new diagnosis can affect the heart, blood pressure, constipation, gi and so much more. Contributing in my opinion as the mysterious “Rett things”.  We have found ways to comfort our daughter, temporarily.  What works for her maybe different for others with this disorder. You see another Rett mom and I teamed up and found out both our daughters have Dysautonomia and diagnosis within a month of each other. But, their systems were different. Her daughters is painful and doesn’t show the physical signs like Mads does.

The bottom line as a parent wether you are new to the Rett Community or have been in this circus for awhile. I’ve learned to ask questions-specific questions on why does this happen. Getting to the root of the cause may not be the answer always but, in my heart if I don’t ask why I feel I’m doing an injustice to my girl. Because of this new diagnosis we are traveling to Minnesota in December to find out more answers.

Rett Syndrome is extremely complicated. Our girls/boys pass at a very early age-they could have a better life. If, there was more funding more awareness. I read on a regular basis of our beautiful children passing before they even finish school. Did you know sometimes they can pass away due to Prolong QT. A hidden heart problem that isn’t looked at if you don’t know that your child has Rett. Just another reason why awareness is needed. It’s treatable if an EKG is given. That’s a simple way to save lives. That’s all us parents in the Rett Community are asking.

As, an outsider you can help. It’s simple, takes less than 5 minutes. Post on your social media that October is Rett Syndrome Awareness month. Put a link http://www.rsrt.org.  Do you know someone or love someone  that has Cerebral Palsy, Autism, Parkinsons, Schizophrenia, or any other numerological disorder. Well, sharing about Rett Syndrome might possibly find a cure for your loved one according to Scientists. Rett is a key-imagine taking those diagnosis’ and placing them in one, you have Rett Syndrome. There is no federal funding-so the research that is out there is aggressive and needs to be. It’s funded by families, friends and strangers. We are fighting for a cure for a vast of diagnosis’-we need your help for awareness not only for my daughter but, for all those other loved ones.

 

 

Rett & Resources (tips of my own)

It’s me, I know you can’t believe it.  Me neither.

Today;  I was reflecting on all the families I talk to now and over the years. Typically it’s about resources that I know off the top of my head or living with Rett.  Interesting enough though,  I’m one that can’t even tell you what the heck I ate for breakfast today. But, when it comes to special needs in MA and resources’ it now comes second nature to me.  I give thanks to my favorite pink ladies 😉 Particularly;  from my old boss Mary whom I’ve learned from over the years in more ways than one. She’s a keeper!

With that, I said to myself (don’t judge-you do it too)  “Gosh Mags you could just put it in that blog you never write in anymore.”  And here I am.

But, I’m going to take it a step further. I’m going to start in the beginning. After all, this blog is about living with Rett.

It started when my beauty was 3 years old and we didn’t have a diagnosis of Rett but of Autism.  Some of the things I did with her didn’t make sense. Like, I would make her walk up and down off sidewalks. Walk through plants (even in cold winters), danced around nonstop in the living room-it was a game for us. She was a busy body (skipping on the side walks in military housing with those 5 dollar plastic heels).  Click click click, back and forth she went.  Like I said “wiggle wurm, busy body”.  You wouldn’t have known that a year later she would be diagnosed with Rett Syndrome. I’m grateful to this day that I pushed her and everyone in her life continued to push her in the physical aspect of her life.  Once, diagnosed with Rett Syndrome (I will always remember the numbness that day). We enrolled her in therapeutic horseback riding.  I drove her every Friday for almost 40 minutes to go to the closest riding facility called High Hopes. In my heart, she pushed herself and become stronger and stronger. I’m thankful for pushing-as today the doctors are amazed on how well she can maneuver independently. She only uses a wheelchair if we go to the hospital, mall, somewhere that walking even for myself would be exhausting!  My advice: trust your gut. Do the little things like play, be goofy and who cares who is looking. Your daughter will truly enjoy it and you will be thankful too.

So, I talked about the physical part. The communication is a “big factor” BIG!  I was just chatting to a mom recently whose daughter got a diagnosis of Rett and she asked me “what’s the number one thing you are glad you did?”  “Look at me”.  When Madasyn was little it became a habit for me to ask her “look at me” “I need your eyes”.   I can tell you why.  I didn’t do it because I thought it would have an outcome or benefit. I did it honestly, because I hate repeating myself. L.O.L. little did I know that my life would be like a groundhog day forever.  This became so crucial in her later years…..   “look at me” became imperative as she didn’t have hardly any typical vocal speech, she started to lose the ones she had. My hubby and I taught her this new skill in the most quiet times. Meaning the most quiet in terms of able to get her attention.  Right when she laid down for bed. She was calm, I would sing her my special song and say “look at me-does mommy love you?”  I would then squint my eyes real tight and say “yes”.  Then I would ask “do you love mommy?, look at me.”  I would tickle her right under those pities to get her to giggle and sure enough she looked at me. Then after NIGHTLY doing this-she always waited for the tickle (lil’ bugga) and then she did it all on her own. She tightened her eyes too while looking at me.  My heart dropped. Here I had a little girl who understood and showed me I can do it mom moment (you’ve had them, if not my promise to you-YOU WILL).  Believing set in and it’s been a driving force ever since!  She started to cry for everything. I MEAN EVERYTHING.  If, something hurt (cry), toilet (cry), hungry (cry) and tired the list goes on.  (I’ll make you cry if I keep going 🙂  But, our focus stayed on these  listed above. She was crying in bed a lot and we couldn’t figure it out. It was driving us insane, to not know how to help her. Something was wrong-we needed to fix it! So, while in bed we gently leaned over face to face we started with “look at me if…”  ” look at me if your hungry”, “look at me if your tired” and so on. She started to communicate by looking and we could help her.  Fast forward at age 15-she looks on command and it’s even been helpful on her Tobii device. I don’t know what I would do if she didn’t have a firm “yes” and “no”. To this day you can rely on her to “look at you for yes”.  But, caution life isn’t about “yes” and “no;s” don’t constantly ask direct questions if you use a Tobii (she will shut down for sure!). Communicating is not a test, it’s spontaneous. Teaching a skill and using it when its appropriate is different. Overboard is deadly when it comes to direct questions.  We’ve lived it. That’s another blog time..I promise!

I do regret not focusing on the hand skills-she did have OT in school only but, I wasn’t honed in on the signs of her decreasing functional  use.  Do, I regret it? Indeed, everyday.  A neurologist told us once when she was first diagnosed to keep her hand functions going. We were lucky to get the D.E.S.E. grant 2 years ago through the Department of Developmental Services here in MA and the Department of Education. It’s a grant that is yearly till age 22. I got to write goals, manage on what to work on and when to work on it.  We focused on communication goals, physical, ADL’s and incorporated lots of opportunities for hand functions too.  She’s age 15 now and she has been grabbing her fork to eat, she’s been self drinking with easy grips and a covered cup.  Once again, her determination is shining through. She never seems to amaze me that’s for sure.   We started though with everything having to be built up.  A paint brush-I would go to Home Depot and buy pipe insulation that stuck to each other and cut it up. It would great.  Markers had crayola model magic on them. I went to the craft store and bought wooden knobs or spools and added Velcro to it and placed the connecting side to big rubber stamps.  Now her paint brushes are typical. She’s been holding a nonbuilt up fork and with advice from her awesome in home tutor she’s learning to turn on and off her lamp in her room by stepping on it!!!! The increase in wanting to use her hands has been only after two years of having an art therapist student who was her skills trainer (through the grant) teach her “wrap your thumb”, “pancake hands”. Loads of patience, making things fun and believing in her.  All the while modeling on the Tobii and encouraging natural speech. We don’t have Leanna any more but, she was an intricate part of Madasyn’s life of teaching. We love her.  It also,transformed into something bigger. Madasyn’s amazing home aides all started doing it too.  Whenever it was natural we did it, whenever we could work on a goal. We did it and still do it.  It has to make sense-meaningful and please make it something she’s interested in. Let her try age appropriate things for the love of Pete. Our aides I’ve noticed have been starting to put themselves in her shoes. Meaning able to think outside the box. When you find folks like that-grab them!! It’s rare to find them and it’s invaluable to us and Madasyn.  I wish I could give them all raises, I would!!  She’s had many aides over the years and ,most touched her life in someway and ours. The ones that came up with ideas of their own-and weren’t afraid to ask to try it and truly loved her, my heart has a special spot for you. There aren’t enough words.

Sensory overload, not just for her but myself, her brother and dad too. Seriously; we all had to be desensitized. She needed it in the real world and we needed it from Rett World.  When that nasty head appears and the crying days of her having a non language based device (before Tobii time), she had a device I called it the beast. We were guilty here at the home, desperate for her to communicate, we asked her direct questions all the time. The school used the device to test in general.  All hell broke loose. The only thing we could do was change the scenery.  Often, it became the television.  DON’T RELY ON THIS TO BE THE OUT!   Television is not your child’s friend. A little is great, but it’s the number one thing I regret was introducing t.v. to her. The weird thing is for years she wasn’t interested in it at all. We kind of forced it on her.  (yup not too smart on our part). But, when you are desperate and can’t take the crying-well I mean screaming. You do what you gotta. Well, that back fired real quick!  Her crying became a behavior for the tube!  Caution and I say it with extreme caution when using it.  Even though it was a way for us to have a guarantee quiet dinner time. We were creating a behavior that we are still working on till this day. Her screaming has decreased a lot (not gone away though), it’s due to everyone doing things the same. Not giving in, most of all having a device to communicate on and that YES/NO reliability.  For years I envied “typical” families. Going to restaurants, shopping, gatherings….(we couldn’t) because that Rett monster would appear with a screamer attached to it everywhere!! If, we went somewhere and there where too many people already there-here anxiety hit the roof! If, we were invited to a family party-hubby or I would have to be with her inside. It was too hot or too loud for her.   Honestly; we gave up going anywhere. She hated being out and about and so did we with her. I know it’s not nice to say, but it ruined everyone’s time. My husband and I wanted to do it as a family. Then when we tried-reality set in. She couldn’t handle it, nor could we. We gave up. I know now the more you do it, the more they learn to cope. It’s exhausting, but worth it.   Just three years ago she was introduced to being desensitized to outings. With strategies put in place.  Well, we have to prepare first-after all we are talking about Rett remember? Go to the parties early and allow people to trickle in, tell her what is expected often. And for places you can’t control? Well, start out small-go to the grocery store for 5 minutes, make it a quiet small store and have her pick something out. Then leave. Keep increasing it each time-but go to the same place. PRAISE HER A LOT! AND TELL SHE’S OKAY IN S A SOOTHING VOICE!  Be specific “Madasyn I’m proud of you for going to the grocery store.” Now-the little wiggle wurm asks on her Tobii to go somewhere ALL THE TIME.  She’s getting expensive-she loves the mall and shopping!!! (it’s awesome!-very typical for a 15-year-old).

Resources: (my experience is from Massachusetts)

  • Apply for the Department of Developmental services. You want help now and need the state to recognize she has a disability to get supports that she is entitled too. Create a connection with them. Don’t just always ask for what she needs, tell them how she is doing too. After-all you want them to remember who your family is. Enrolling early will also help for her future supports.  You will learn resources through D.D.S. Don’t be afraid to say I don’t know, can you help me find out? Or do you know where I can turn to?
    • What services can you get? (Fiscal runs from June 30th-July 1st). Request a sit down to discuss her needs prior to the fiscal year. Always keep in mind her “needs not wants”. Be realistic.
      • Family Stipend Plan or Family expenditure (can help pay for therapeutic services not covered by insurance ie;  horseback, music, swim are some of the ones we’ve used)
      • Connections to support groups, or community activities, grants and so much more
  • Apply for Mass Health Insurance (even for secondary or third insurance for your child)
    • What are you able to apply for, if qualified?  Personal Care Services, Pull ups or Diapers, Chux, Gloves, Assistive Technology, Speech, Occupational Therapy, Physical Therapy. (all of these your child’s pediatrician can put a request in for these).
    • Once approved apply for Premium Assistance
  • Seek a communication device if needed, trial various ones. Your daughter is never too little to communicate!   Insurance will pay for Assistive Technology (A.T.)  (communication devices, switches, activity chairs any supports she needs to be able to function on a daily basis). Typically, an Occupational Therapist or Physical Therapist writes a letter of medical necessity (I used her school).   Key words “medical necessity and continuity of care”.  For example: we got denied for a bath chair that moves up and down in the bath tub. They would approve a hoyer lift style. So, I wrote a letter and asked the therapist to write a letter too. We stressed on how it was medically necessary for her to be able to have a chair that can allow her to ease in safely in a bath tub. She can not use a hoyer lift style because she couldn’t hold on-it’s unsafe and can be fatal if she falls. Well, we were approved for the automatic.  Sometimes, insurance companies will wait for the appeal. So, do it-what do you have to lose?
  • Consumer Empowerment Funds Program:up-to $500.00 a year for training’s, conferences, workshops and I used it for communication camp (not camps in general tho)anything that can empower you, the family or your child. Apply as soon as you know you are interested. They will let you know if you are approved and then will reimburse you after the event.
  • Family TIES of Massachusetts (resource experts!!)
  • Federation for Children for Special Needs (will answer any advocacy questions for schooling and so much more!!! for free!)  Take their advocacy training-it will pay off in the long wrong on how often you will use it!

 

❤ REMIND HER DAY IN AND DAY OUT HOW MUCH YOU BELIEVE IN HER ❤ Continue reading

Sing on…Shine on…

Sing on…Shine on….

Posted on August 25, 2014

It’s been a really long time since I’ve blogged. I apologize for those that enjoy reading my blog. Let’s say….life has been full of some crazy days. (I won’t bore you with the details). That could be its own blog! Today; though I want to share some updates on Madasyn. The ending of school of 2014 was very unpleasant in our household. Frustrations were at its highest point, behavior plans had to be put into place and the family to be honest felt like it was falling apart. I felt like everything was crumbling around me, everything we’ve worked for was falling apart. I honestly thought, I was going to have a breakdown. I’m a very private person. But, I know some of you would relate. Specially, my Rett family. I can’t speak for the two men in the house; but I can say we’ve had a great deal of frustrations, arguments and anxiety for all! You see Madasyn had finished up trialing a new Alternative Augmentative Communication (AAC) Device called the Tobii. As, most of you know she had a Dynavox Eyemax for almost 5 years. She flourished in the trial for 30 days of the Tobii. For the first time, the Tobii was able to go pretty much anywhere. We had to keep vigorous notes on her usage. Why? Insurance demanded to see if this form of access of communication was beneficial and a good fit for her. Madasyn had an advantage she understood the concept of eyegaze machines. So, that wasn’t the issue. What was the issue was the communication software on these totally two different machines. Prior to the Tobii, we hardly ever EVER heard Madasyn access her Dynavox independently. She self-taught herself a new way to communicate. CRYING! (okay more like screaming nonstop at times). She became increasingly frustrated with the Dynavox because of the communication did not make sense. And being mobile that she is; every single time she moved, we had to line her eyes up into the sweet spot of the Dynavox!It was not the right device for our daughter, but is for many others that are not mobile. In the insurance world the individual can not have a new device until 5 years of having their old device. Don’t get me wrong, the first 3 years she did pretty good on it. But the last 2…yeah not so much. When she started trialing the Tobii everyone in her life saw a big difference. Quotes from almost everyone, “where has this device been?” As, much as I wanted a new device for her, we had to wait for that 5 year mark. Who can afford a 20 thousand dollar device? Not us! So, the time came to trial and we were all blown away. She showed her smart side to everyone. She initiated conversations, she sassed back with comments, she was telling us what was wrong with her body, she had means to express her feelings, telling me “your mean” (when I wouldn’t let her have her way) and telling me the next day “I love you.” She started to advocate for herself, something we all want for all our kiddos. In those thirty days of trialing the Tobii her moxy started to shine. Strangers got a glimpse of who she was for the first time. Taking the Tobii out to Friendlys for instance, she ordered what she wanted to have for icecream. Now; think about that for one minute. You go to the ice-cream shop and you have your heart set on chocolate chip (my fav). But, your family orders you strawberry. Who wouldn’t get mad right? Madasyn picked out her very own ice-cream and toppings for the first time! And smiled the entire time. Why? She had her voice, it was her freedom to say what she wanted and requested at that time. It was perfect for her! School was so excited for her too; Madasyn arrived at school at 7:40 by 10:00 she was done with all her academics. ALL OF THEM! MATH, SOCIAL STUDIES, SCIENCE, ENGLISH. Does your typical kid do that regularly? Then the trial was up, I placed her old Dynavox in front of her. The crying started up again, even after warning her through the trial process that it was temporary. 3 long months of crying from hell took place, it got increasingly worse. She was furious because her voice that she loved was gone again. Why couldn’t we just put the program (voice software from Tobii onto the Dynavox?) They are not compatible. We had paper versions but, it was not what Madasyn wanted or needed. We’ve now had the Big Tobii through insurance for two months, we also got Madasyn through fundraising a mini Tobii with help from extraordinary family and friends. So, no matter where she can go her voice is with her. It’s funny, Madasyn’s all time favorite movie is The Little Mermaid. When Ursula takes Ariel’s voice, Madasyn gets very vocal. Clearly she doesn’t like it. Well; when a law is passed to alleviate the right for an AAC device or limitation of one, or someone is denied to participate in a program, group or even activities. Or simply you turn down the volume on a device, or maybe don’t even bother turning on a device. Well; my friend I have news for you, you are the villain like Ursula. Don’t you want to be heard with your voice all the time? So does everyone else that can’t use their typical voice and rely on some other way of communicating. Just like Madasyn she wants to be like Ariel and to have her voice, not for it to be taken away. Doesn’t that fall under civil rights, after all she is nonverbal and you are discriminating part of her disability? Doesn’t that fall under freedom of speech, something our country is known for? Madasyn goes to an AAC camp in Maine every year, this was our third year going. This year there were 25 campers all with devices of some sort. They all communicated, my girl communicated more than I’ve ever seen her do! It was so amazing!! She had her voice everywhere, she got to see she was normal and was accepted for being herself. The staff, teachers, volunteers and parents all being accepting of everyone and willing and BELIEVING in those campers, those campers that just were allowed to sing on and shine on….

thank you

Life with Rett brings all sorts of amazing people into our lives. Sometimes these amazing people are right under your feet and you never took the time to say thank you, until it’s too late to realize it. Today’s read is hard for me to write you see it’s about the one man that always believed in a way that you can’t imagine. The one man that typically on any given day something not so positive always came out of that sailor’s mouth. He was set in his grumpy old ways, strong on his politic views (gosh; only made that mistake once to decide to chat about it!), strong on his beliefs in god-even though he didn’t go to church, strong on his love for his family. He had a sense of humor like nobodies business and a damn good prankster, a man that traveled and lived life to the fulliest and oh boy what a story teller! He definitely was a character, a one of a kind. Over the past years he became involved even from a distance about learning about his grandaughters disability. As, a daughter I never thanked him, I never gave him an extra hug. I took it for granted-you see that he’s my dad he will always be around. Well, that’s not the case-he passed unexpectantly this past April. Out of all my immediate family, he was the one that called everyday or vice a versa. Never did he not ask about my kids, specifically about Madasyn. Over the years we became not only daughter and dad but he became my friend. A friend even on his last hours, wanted the doctors to learn about Rett, “get those doctors in here muffin and have them open up those check books of theirs, they have enough damn money to share!” “I bet they don’t know about Rett!” My dad in eyes of many was a man who gave hell to most and many rolled their eyes at him. Me, I saw a man that I am proud to say he was my dad a dad that gave his full heart to those he loved. I hope I can be at least half that in my life.

Sometimes a thank you isn’t given properly or that person doesn’t hear you entirely. So, today my goal is to make sure that because of you-the fight for a cure is closer than ever. Each time you mention Rett, each time you wear that shirt, each time you like or follow in some kind of social media, each time a stranger asks, each time a donation appears as little or as big as you’d like-a cure becomes a reality. I want to THANK YOU! my soulmate, my son ( I see alot of grandpa in you), my entire family (Bonnie) & including my crazy ass cousins, old friends, new friends, aides, teachers, co-workers, strangers (the unexpected letters received on behalf of Madasyn), Madasyn my inspiration and my dad-without each and everyone of you, we couldn’t do it without you. I definitely can’t-you help me be strong-so Thank you! With lots of love sent your way……and a hug.

the true you

I often think as I look at my daughter when she scrunches that little nose up or looks at me like she is reading my soul.  I often think what she is thinking and what exactly is going on in her mind? She can’t speak like you or me. She expresses herself in various ways that are uncommon for most. Do I seek those words that are taken for granted? “I love  you, mommy” absolutely!  I wait day in and day out to see if any words are expressed. Most days it’s silent or just babble sounds. But, she does the best she can. I know most folks think that us mom’s think our child of special needs we may “expect too much”, maybe our dreams for our children are not realistic according to the normal individual. But, what is?  If, your typical child is not good at soccer or can’t write. But, shows they love it, would you encourage them not to try their hardest? Or would you expect the coach or teacher to give up on them?  No; you would expect they do their best. You would hope the teacher would guide them and teach them, you would hope the coach would learn patience. Because it may take a while for your child to learn the game or skill it’s also possible he/she or may never learn it. I hope the same for my daughter.  She loves to socialize! So, learning to communicate in any shape or form is what I dream for her.  I know and believe that her true self can come out, if she has those coaches, teachers, friends and even strangers that would just believe in all her possibilities. We are fortunate to have some in our lives, but they are sparse. Shoot for the stars the saying goes…Who does that apply too?  My daughter is smart, kind, gentle, sweet, loving, funny, defiant, and strong.  Sounds like a typical kid too me. It’s a big part of her true self, but she has more to share and say.