Sunday, November 17, 2013

When she's sick she's better

Abby has Pneumonia so why the weird title?

I wish I could show you on video but as with everything Rett, on command isn't really a possibility.

Abby woke up 3 days ago in the middle of the night with a fever of over 103. She was coughing and had that wheezing bark that no parent wants to hear.

I immediately left a voice mail on the Peds line. I had her at the office and on antibiotics within a few hours (Now if only I would take that good care of myself)

The last few days she has been coughy and gaggy and feverish.

I was looking at her this morning when she was talking to her Dad. Anyone that knows Abby knows that her speech sounds like a Native rain dance. " Woo woo woo woo....woo woo woo woo."

This morning at the same moment I thought wow she has really been trying to talk lately.....I realized lately had just been the last few days. What is coming out of her isn't English or intelligible but it's something.

Instead of looking at us when her show ends then looking at the remote she is turning, cocking her head, and speaking in what sounds like speech. it just sounds like another language. It sounds like questions. It sounds like statements.

At that moment this morning, as soon as I had that wow moment, I had that gutted moment of realizing it would end with this illness.

Within a year or so of Abby's change when she was a toddler I told the doc I thought she was getting better and it was weird cause she was sick and had a temp and a cough. He asked what meds we were giving and how long she had the temp. He then told me what most medical professionals know but most laymen don't. For some reason kids on the spectrum or are developmentally delayed have flashes of sparking...or where things click when they usually don't. And when they were on a specific cough medicine it seemed to be even more so. It was the one she was on.

Abby doesn't get sick very often so this time I forgot...again. But I am going to enjoy the hell out of it today, and maybe tomorrow. Until Rett comes back and takes it away again.

She's so in there today. Id give anything for the key or the ability to kick that effing door down and get her back...while the monster is sleeping.


Monday, August 5, 2013

A Change in Abby. (Take that, Rett Syndrome!)

There has been a change in Abby lately that I have been amazed by. It kind of snuck up on us and every day she surprises us a little bit more.

As per usual it takes me a bit to realize when something is going on and that it could just be a combination of things. It took standing in a hallway talking to one of her docs and saying it out loud to realize that Abby is improving.

A few months ago we started Abby on a blenderized diet. Her Ped had suggested trying to feed her. I listened and agreed out of courtesy but really had no plans to be covered in rice cereal, carrots and applesauce again. Ive tried for years. She can't chew and swallow and call me a bad Mom if you will but I cant take 2 hours to feed her a cup of food, half of which I will wear.

A few other Moms I knew were giving their girls blenderized food. Being the ever loyal pessimist I was pretty sure that wouldn't work and rolled my eyes at it. A few days passed and I thought id give it a shot. I spent weeks just putting some rice cereal in with her formula then adding one food item at a time, kind of when you are trying to start feeding an infant. Abby's tummy is so delicate I didn't want to throw her into shock.

About the time I started the blended diet, one of the doctors at Abby's Chiropractor gave us a super duper green tea antioxidant supplement and swore by it. I have to admit I kind of inwardly rolled my eyes at him too. Its Rett Syndrome. Nothing helps Dammit. It took a few weeks for me to go ahead and throw that supplement in the blender. Once I saw it didn't make her sick it just became part of the routine.

This past week he asked me how she was doing overall. He also works with Special Needs Kiddos at a learning center and has taken a special interest in Abby. I told him how she is trying to crawl. This child hasn't had enough strength to hold herself up on her hands and knees since before Rett Syndrome hit. But the one thing Ive noticed is an overall increase in awareness and we are getting words.

I think he thought I was nuts. I told him how Abby has always babbled and hummed and how we might get A Dowa during Dora the Explorer or an Uma for me if she is trying to get my attention or is upset but we are getting clear Dora's, she is saying go, hi, bye, love, love you, I big..and so on. He was so cute when he stood there and teared up.

On the way out the door about a half hour later the lovely woman at the desk stood up and said," Bye Abby," like she always does. We paused at the door and I said,"You tell her bye," I wasn't really expecting Abby to perform on command. She then yelled out,"Bye!" and threw an arm towards her. To say that office jumped and squealed would be an understatement.

In just a few days since then everyone that comes in is greeted with a ,"Hi."

When her shows end she says,"More Dora Maaam."

I have graduated from Uma to Maaam! Yes I realize there is an extra A in there. Thats because it's definitely a Maaam!

Last night when I tucked her in she was furious about something...As I left the room she yelled,"Maaam! More!"

Now I don't know what she wanted but she was trying. Her Pistons are firing. We don't have a cure. She still has Rett Syndrome but my almost 9 year old daughter is getting words and answering and expressing her opinion as best she can.

I fully believe her new diet and the addition of this supplement have been our answer to the changes in her.

For those interested in trying a blenderized diet I started by going to

Blenderized food for tubies on Facebook

and

Food For Tubies

If you are interested in trying the LifeVantage Protandim antioxidant supplement you cant find out more and order by clicking the link below:

Protandim

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Disclaimer:
I am just a Mom. Not a medical expert. I am only giving my observations on our personal lives and have not been asked to nor will I receive any monetary compensation for any of my recommendations on this blog.
Please consult a doctor before trying anything new with your Special Needs Kiddo's

Monday, July 8, 2013

Sometimes I forget

Sometimes I forget that Abby has something "wrong" with her. Lately its been easy to just accept her as her and our life for what it is. Without realizing it consciously I have hunkered down into our safety zone. Finding excuses not to mingle with the outside world. Sometimes I even get Panic Attacky anxious about having to do so.
We still go to our appointments...only four this week. But we don't do anything else. We have been going to see my Aunt and Grandmother but other that that there are no stores, restaurants, movies, play dates.

Today I wondered about all the reasons we don't....until we were walking out of a feeding clinic this am and I just had this whole sense of what we must look like and our surroundings and it was hard to swallow as I panted in the van trying to catch my breath and keep from passing out once we reached the parking lot.

When I can help it I walk Abby in and out of therapies and appointments. Its hard on my body but I do realize she doesn't want to be in that chair and she doesn't get the exercise a typical kid gets just by being a kid. Walking Abby is difficult. Picture trying to walk the Tasmanian Devil in and out of hospitals and clinics. She is babbling loud and incoherently. She is spinning,dropping,penguin crab walking, Leaning,stopping or falling backwards to look at the sky. Its hard on me and I hurt all the time but I do it. Her hanging on to anything that resembles normal. Anything that she CAN do no thanks to Rett is much more important that my aches and pains. So many children with Rett Syndrome cannot walk and I know we are blessed. I will not take it for granted.

The hospital was busy this am. Its not a thing that we Special Needs Moms talk about but we don't make eye contact with other people. Not you Normies anyway. We would rather focus on our children and the best way to get from here to there than see you staring with your mouths dropped open. We don't want to see you grab your child and get them out of our way. Not as a courtesy but like you are afraid we are going to get some on ya or like you are shielding your child from having to see something horrible. I did get one pity smile from a woman sitting alone. I didn't smile back. I just focused on the door. A little mad at myself that I had let my guard down for that 30 seconds. I know better.

I also know what me must look and sound like. I do understand the open mouths gape. The Holy crap what the hell is up with that kid look on your face. I get it. I don't know and cant say how I would of reacted if we had not been thrown into this nightmare. Sitting wherever while a girl makes the weirdest noises. You turn your head and she is beautiful. Smiling at her mother like she hung the sun, moon and stars. Thinking its so sweet the way her mother holds her hands. Then there is the shock as she starts to rock back and forth. What the hell? She's humming loudly. Almost like a chant. Boogah woogah lakka ummagah nah. Over and over and over. Occasionally a hand will get away and pull her mothers hair or slaps her in the face. Wow she is really loud. OMG her Mom just let go and she walked, stepped fell to the right like she was in a room where the floor tilted only for her. But she looks so normal. Oh no she's drooling...and so are you at this point.

We do understand. We don't like it but we do. At least I do. I just don't want to see it.and I dont want it to be us. Your reactions kill me. As kids we were told not to stare and we didn't. The only time we saw someone in a wheelchair was if they were a Veteran. You could explain a Veteran to a child. You didn't see the kids at school. Hell we didn't even know they were there. It seems weird to me that there were always disabilities yet I remained completely unaware until I was grown. Where were these kids? Was it easier to hide them away or keep them at home?

Yes

Today in the world of political correctness we can now live the lives of normal people right along side the rest of you. But just so we wont sue. Most of us don't.

Why?

Its not you completely....although Id love to have some one or some thing to blame.

Stores- Fluorescent lights are a bitch. Way too bright and there is that hum normies are able to tune out that our kids cant.
There are people they don't know coming towards them and moving in every direction. There is a voice from nowhere over head. Some beeping.We are moving, we are stopping..more beeping. Abby deals with this by making damn sure she hears nothing but her own voice....They call them Silent Angels....WHAT?

Restaurants- Light, Noise, Weird smells...Moms nervous. Trying to focus on the child while people stare. Whats the best way to deal with this environment? By losing your bowels or vomiting apparently. Good times.

Birthday parties- There arn't many of those. People will usually invite you once. Until you show up and the event turns from a day about your kid to a day about mine. Everyone trying to be nice and include them that they go too far or our kid gets overwhelmed and freaks the F out.

Church-Wow church. At others peoples houses I have observes one parent or grandparent staying home with the SN kiddos. Its easier. You cant leave your kid in kid Sunday school or child care. Most times the rooms are up or down stairs or they just don't have the ability to care to for the SN kid. When you take them into church they will spend the entire time....or at least mine will, yelling over the preacher or there goes the bowels again. Something about that little room and the echo and the confined space. I am embarrassed for her, for myself and for you to have to sit there and listen to a kid farting like a beer guzzling frat kid on an all bean diet. And the kid that absolutely will not fill her pants at school or while we are on vacation has absolutely no issue with doing it on an airplane, in a church or in a restaurant. I appreciate the comforting touch to my arm...cept I hate being touched but I cant punch you in church now can I? Pretty sure its a rule. The worst part is the pity. Stop pitying me. Hi. How you doing? Tousle her hair. Don't stop and talk to me like its a Barbara Walter interview and you are just waiting for me to cry. Want me to cry? I can do it. Any moment in time at any point in any given day. Id just rather not.

Home-Home rules! If she is tired she can sleep. If she had to go potty she can. If she wants to be fed by a tube into her stomach she can. She can do that while sleeping or sitting on the potty. And Dora is there. Dora is there all the time. She lives in her living room, bedroom and sometimes Dora even lives in the bathroom. No one makes her Mom sad at home...except the bill collectors and hey we have caller id so suck it right? At home nobody stares at her..Cept for Mom. While she's sleeping. Only thing better than Home and Dora is Mom. And at home Mom isn't crazy...Just don't ask Dad.





Saturday, June 22, 2013

Time to fess up

Hey all.
First I want to apologize for abandoning this blog. I was not my intention and I do one day hope to get back to it.
As it is what happens sometimes, real life has gotten in the way of me having anything above and beyond my phisical responsibilities.
I am ill. I have been for a while. I ignored my symptoms because I dont have time for them. This past week I have made 2 trips to the emergency room where I was given Iv's, blood tests and sent on my way because I do not have insurance. On Thursday we finally got to speak to a social worker who got me into a sliding scale clinic..Oh joy..  For July 1st. I need many tests, treatments and other stuff...Not ready to be felt sorry for. Ive spent the last 6 years with the world feeling sorry for me. I dont want to be showered with more of it.
So, Im exhausted, Im anemic, Im weak. My house is a wreck but Abby is still unaffected...except that I had to cancel 3 therapies this week. I am not able to lift her except in and out of the car as I have no choice on that one.
My going to see my Grandmother on Hospice every weekend has suffered the past few weeks. Cant take a chance of passing out driving with Abby in a van with the steering going out....as I wrote that it is the exact reason I have put my writing on hold. My life is a pathetic mess.
Please pray for us....or whatever it is that you do.
Hope to talk to you soon,
Terri

Tuesday, April 2, 2013

Why I don’t support Autism Speaks (which is why I don’t ‘light it up blue’) -A guest Blog by Deanne Shoyer

April 2nd is World Autism Day and I thought having a well respected and recognized mother of 2 Autistic boys would be the perfect guest blogger with a message I feel passionate about. AND she just happens to be a friend. Thank you Deanne Shoyer - Author of Small But Kinda Mighty  and Circle Of Moms Top Tech Blogger.

 I've found myself explaining to a number of people recently why I don't support Autism Speaks, so I figured maybe it was just easier to write a blog post about it so all my reasons would be in one place that I could then just link to. Blogging inspired by laziness, if you will. This is a tricky topic for me because I have friends who do support Autism Speaks (AS) and have found their local AS chapters in particular to be helpful and supportive. I'm not about to withdraw much-needed love and support from these friends but I continue to make it clear why I disagree with their choice in this regard. So much so that the fact we're still friends is a testament to their inexhaustible patience when it comes to putting up with me. There are also a lot of people out there who support AS because when they google for information about autism, it's the first site that comes up. This is another reason why I feel the need to speak out and explain publicly why I can't support this charity. In fact, I encourage everyone to do their due diligence when it comes to supporting any organization, whether that support is either moral or financial. So, here's the list of reasons why I don't support AS:

They support eugenics

Yep, I used the 'e' word but I'm actually not doing it to be inflammatory. I'm not suggesting that AS is full of Nazis or anything else that is completely untrue so calm down already. Eugenics doesn't have to be seen as wholly negative in nature - one can argue that any research focused on trying to eliminate genetically inherited conditions (like Huntingtons or cystic fibrosis) is eugenics. That's why there's always so much ethical controversy over this type of research because:
  • it could lead to unforeseen outcomes.
  • Unless a birth defect is uniformly lethal prior to or at birth then who gets to decide whether that trait or condition is considered 'undesirable'?
Whether its intentions are positive or not, I'm not a fan of a eugenic approach. Genetic therapies, genetic testing - I don't in general have a problem with those, but trying to direct the course of human evolution - that leaves me queasy. How can I say that AS is a eugenic organization? Well it's right on their website:
"Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism."
It's also right there in Part II of their Form 990 (U.S. tax return filings). They want to eliminate autism. I'm not going to support anyone who wishes my sons could have been prevented.

They are anti-autistic

Not one of their board members is autistic. Not one of their leadership team is autistic. One person, John Elder Robison, is a member of the Autism Speaks Scientific Advisory and Scientific Treatment Board - he self-identifies as aspergian rather than autistic. If there was an organization called "Femininity Speaks", led and staffed by men whose goal was to prevent, treat and cure femaleness, would you be comfortable with that? Take a look at the responses from autistic people to the AS produced video on AAC: Autism Speaks, I want to Say for a wonderful set of critiques about why the messaging from AS is still anti-autistic and very problematic.

They don't spend money in ways that would actually support autistic people and their families

Let's take another look at that Form 990 from 2011 (the latest year available). Total revenue (Part I, line 8): $50, 238, 297. Amount spent on family services (Part III, line 4c): $4,477,702, or 8.9% (round down to 1 decimal place). I think that bears repeating: less than 10% of AS' gross revenue is spent on helping autistic people and their families.

They spend a lot of money on executive and independent contractors' compensation

Form 990 Part Part IX line 5: Compensation for key employees - $3, 154, 665. This isn't total compensation, this is just for the highly paid, top executives. There are 18 people in AS who make in excess of $130,000. Total compensation for all of AS would also include lines 7, 8 and 9 which adds up to $14,620,085. Line 11 includes all the amounts paid to independent contractors including government lobbyists, public relations firms as well as legal, accounting and management firms. The total amount paid out is $2,864,784. Do I have a problem with charities paying their employees a reasonable, competitive wage? Absolutely not. Do I have a problem with an autism charity spending 5 times as much on compensation, public relations, lobbying, etc than on autistic people and their families? Yes, I do. For every dollar you donate to AS, less than a dime goes to autistic people and their families but 41 cents will go towards compensating AS executives, employees and independent contractors.

Why not support 'light it up blue'?

AS started the light it up blue campaign. It's inextricably linked with them so by supporting it you provide them with free publicity, legitimacy and, if you buy a blue lightbulb at Home Depot (the co-founder of Home Depot is on the AS board), then you are financially supporting them as well. For the perspective of some autistic people on this, check out the Tone it Down Taupe campaign. [caption id="attachment_2774" align="aligncenter" width="187"]Tone it Down Taupe ribbon I love someone without autism[/caption]

Are there any 'good' autism charities out there?

Here are the ones that seem to be the least problematic: Autistic Self Advocacy Network The Doug Flutie Jr. Foundation If you're in Toronto, my recommendation would be The Geneva Centre for Autism.

Let's move from awareness to acceptance

No point in me re-writing this, so just go read a couple of excellent round ups from Steve Silberman and Shannon Rosa of why autistic people want you to focus on acceptance of autism, not awareness. I'm with them 100%. Someone recently asked me how I would encapsulate the difference between awareness and acceptance. My best attempt was that awareness stigmatizes difference but acceptance values it. I value my boys, just the way they are. [caption id="attachment_331" align="aligncenter" width="225"]My beautiful boys My beautiful boys[/caption] (X) CLOSE

Thursday, March 14, 2013

Almost ready

Today someone asked me why I haven't been blogging right as I was taking pics to add to a blog post.
I told you all a while ago that I was tired of myself being a negative Nelly and I want this to be Abby's place and not my look at how crazy Abby's Mom is place. You guys know how poor me I can be or psycho Mom and believe me, I delete about half of what I right when I'm mad or sad so you never even see it.
So, an explanation...or a couple of explanations and my next blog will be back to business as usual.

Life has been difficult here. Abby is unaffected. Ive made sure of that.

George is still unemployed. We are going on 5 months now. He has applied everywhere. I don't know what else to do. I thought we were poor when he worked. At this point I would think we were rolling in it if we got the same income back. We eat out of food pantries and rarely have the bare necessities. We cant even run the errands we would like to save the gas. If we have to go to the same area two days in a row I put it off as to not to waste gas. We have had to take ourselves...me and George down to one meal a day most days in order to not go without food. One the bright side, that weight Ive been trying to lose doesnt seem to be much of an issue anymore.

We lost another caregiver. Its been about 6 weeks now. I'm exhausted. Probably more than I have ever been. I haven't been able to get around to hiring a new one out of exhaustion and frustration
.
If  you remember our van was stolen. We did have a 14 year old van donated and we are thankful. Abby is getting so heavy that trying to load her in the smaller van is a chore with her weight and length.

My mother passed away 6 weeks ago. We were estranged and had been off and on since I was 17 and completely for at least 13 years. There is some guilt that comes with that. I also have this inner need to make sure my brother is taken care of. I just don't know how. She passed without a will which leaves me as her next of kin. I am trying to do the morally right thing and make sure everything goes to my brother but the courts wont let it be that easy. I really toss and turn over this one. Neither one of us can afford a lawyer. I only want to sign my rights away. It is what is right and what she would have wanted.

There are several things we need for Abby and I have no means to get them and it makes me sick to my stomach.Im sure it will all work out eventually. Im just getting kind of fed up with that whole one day dream.

On the other hand I do have people that are helping by donating food and possibly one therapy. I will know more on that next week.

I do have good news to share and that will come in the next few posts.

Bare with me.

I'm trying.

Friday, February 1, 2013

Abby's still moving and grooving.

Last night we were sitting watching Dora as her majesty commands and i grabbed my phone as she was up walking,dancing and trying to play with her cause and effect music toys. M thinking I may have to get her a flatter laugh and learn music toy before she breaks her hand on that stick up sunny part, but she loves the light up keyboard so much! Because she has no purposeful hand use she can only bat at the toys but she does love them!

I grabbed the phone because I wanted to show the therapist,teachers, etc that Abby CAN walk. I don't know if it is her condition or her flat out onry spoiledness but no one else can get her to walk but me. How do I do it? I leave her to be. As soon as you put hands on her to help or steady her she pulls her abortion protester routing and hangs on you or drops.

Yes she is wobbly. Yes she has a huge,stiff gait but she CAN walk...if you'd just let her.

The circles she does is her dancing.....

Sunday, January 6, 2013

TEAM ANNA BANANA! IN MEMORY OF

This year my dear friends Stefanie and Manny will be running in the Disney Half Marathon without the physical presence of their dear Anna who lost her battle with Rett Syndrome on September 5th 2012 at the age of 4. Please read and contribute in memory of this incredible little girl. Thank you

Once again, Team Anna Banana is on the run to raise money for a cure for Rett Syndrome.
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For Manny and me, it is very clear to us that Anna would not have us suddenly walk away from the Rett community and leave behind friends who we love and care so much about.
Despite what we have been through, in suffering the worse loss, and experiencing daily unimaginable pain as we navigate through our life without the physical presence of our beloved daughter, it does not sit well with us to segregate ourselves from moms, dads, and siblings of girls who continue to live so heroically with Rett.

We committed to the Disney Princess Half Marathon before Anna gained her wings on September 5th, 2012, at the age of 4, from complications from Rett Syndrome. Quitting was never in our vocabulary before, nor was it ever an acceptable option in our fight for Anna. In her memory, we will see through this commitment.
Team Anna Banana includes more than Manny, Stefanie & Gabriel. It is our group of family and friends who so selflessly rallied around us and supported Anna.
For Anna, who appeared "normal" at birth, everything changed right before her first birthday. She could no longer sit on her own, and could not walk or talk. She received all of her nutrition through a feeding tube, and then later, a jejunostomy tube. Anna was unable to enjoy the many simple pleasures we take part in every day.
Despite her daily struggles, Anna communicated through eye gaze and was a little princess inside; her favorite movies were "The Little Mermaid" and "Beauty and the Beast." She slept with her Belle doll everynight. She was a fiesty and funny gal who also loved dressing up and going to school and being with her friends.
For every step it takes us to complete 13.1 miles, we will think of Anna's Rett sisters, who would give anything to take even one. It brings us some consolable peace to think of Anna walking and running all over Heaven. Last year when we ran the 1/2 for the first time, Anna was in her wheelchair. This year, we know she will be running with us in spirit.
Researchers have found that Rett Syndrome is reversible in mice, and we know a cure is out there. It is not a matter of IF, but a matter of WHEN.
We thank you for your tax-deductible donation to help support us in finding a cure for Rett Syndrome!

To donate to Team Anna Banana please click HERE