The past 5 days have been interesting.
Ok, that is a total lie.
The past 5 days have been awful.
Faith has never been much for sleeping. It’s as if the little switch that we all have that flips over in our brains and allows sleep, is missing for her. She just stays awake. For about 3 years now we have been using a combination of two medications, clonidine and trazadone, to help ease her into a restful and restorative sleep. We came to use those two particular medications after several years of trying natural, herbal, sensory, diet and behavioral modifications.
For the dose that Faith needs, we have her medications compounded. While that allows for ease in dispensing, it is a pain in the tush. The meds are only stable for 30 days, our insurance will only allow refills ever 25 days and shipping time for the compounds is 2-3 days.
We walk a fine line of “Crap! Only one dose left and the UPS guy isn’t here yet!”
We had our yearly appointment with Faith’s Developmental Pediatrician on Thursday. While discussing this issue we brought up having a back up medication on hand for situations like this. Since Faith is now almost 90 pounds and the medication would be used only very rarely for sleep, we thought of trying Ambien.
Conveniently, Thursday night we were on the line of running out of her compounded meds and her new ones would not arrive until Friday. Perfect night to give the Ambien a try!
Since I take Ambien, I know it works fast. We waited until almost her normal bedtime of 8pm, and then gave her 2.5mg. Then we waited, hopeful.
9pm – nothing
10pm – she was beginning to act hyper, making many vocalization and stimming
11pm – she was full on stimming, vocal ticking, trying to pick her fingernails off.
12pm – she was combative. Trying to hit Jimmy and I, pulling my hair, trying to hit her head on the floor, yelling at something she was seeing. We had to take turns attempting to hold her to keep her from hurting herself.
1am – combativeness started to lesson, but vocal ticks and stimming cam back, spent a lot of time shaking her head back and forth and laughing at the colors
2am – still wide awake, but no longer talking to things only she could see. Asked for her iPad.
3am – toppled over.
OMG! Every muscle in my body hurt from the force of trying to hold her safe from hurting herself. But at least it was over, right? Right?
7am Friday she popped up and began the vocal stimming again. Not in the frantic way of the previous night, but in a manic way. She was wired. She was unable to focus on anything, was talking but jumping subjects so fast she was hard to follow. This continued all day long. Thank goodness her compounded meds were being delivered that evening.
At 5pm the UPS guy delivered her medication.
Ummm, we have a problem.
Did I mention her meds are compounded on the east coast? Did I mention it was Friday? Did I mention the pharmacy and my doctors office are closed on the weekends?
The new med was totally different. The compound that we have received for the past three years was dark purple, with a strong grape scent. It was the consistency of thick syrup. It was labeled 0.1mg/ml.
The med that arrived on Friday was totally clear, very faintly grape-ish smelling. It was the consistency of water. It was labeled 1mg/ml.
No note explaining the change. No one answered the phone at either the pharmacy or doctors office. She was still wired. She was still going a mile a minute. Until I talked with someone who knew what was going on, I couldn’t give her the clonidine. She was up until 2am Friday night. She woke once at 3 until 4am. She was up for the day bright and early at 7am Saturday. Then followed another full day of hyper, disjointed stimming and vocalizing.
This has to end sometime….right? Right?
Saturday she fell asleep once again at 2am. Up again at 5 for about 20 minutes, then asleep again until 7. Sunday was again full of hyper bouncing off the walls. Jimmy and I were on our last nerve. No sleep does that to a person after several days.
Anyway, long story short…
We finally talked with the pharmacy on Monday….after 5 days of hyper, wired, no sleeping Faith.
She had her correct dose of meds on Monday night. She fell asleep by 8pm and slept with only 2 wake ups until 10:30am on Tuesday! Her poor little body was plum worn out.
As are we….
There has been a feeling creeping in on me for a few weeks now. It has been coming closer and closer. Until this morning I didn’t have the exact wording for the feeling.
I feel lost.
Not in a “Where did my GPS lead me this time?” way. (Mine has a sexy Australian voice. I tend to just listen to him talk, not actually pay attention to where he is leading me…but I digress)
In a “Where is Allison?” kind of way.
I have spent so much time over the last 20 years being what I thought everyone else wanted and needed me to be that I have lost sight of what I want to be. Of who I am.
A mom? Well yes, I am a mom. I enjoy being a mother most of the time. But that is part of who I am, not who I am.
A wife? Well yes, I am a wife. I have a wonderful husband who is my partner in almost every sense of the word. But that is part of who I am, not who I am.
A daughter? Well yes, I am a daughter. I have parents, step parents, in-law parents. I am certainly a daughter to many. But that is part of who I am, not who I am.
A sister? Aunt? Cook? Housekeeper? Friend? Blogger? Tweet-a-holic? Teacher? Tired? Lupus patient? Failed gardener? Reader?
I have lost me. If asked to define who I am, I would only have a blank stare to offer as my answer.
If you find me, please leave a comment. Possible reward.
Followers on this blog know that I have been voicing my concerns about Animals For Autism since August. Our concerns have been brushed aside by Pepsi and Global Giving. After all “How hard can it be to train a dog?” and “You must just have a personal problem with Lea Kaydus.”
I will be the first to admit that I was a total novice going into this mess. I was naive. I overlooked glaring red flags in my hope to help my daughter.
Global Giving and Pepsi seem to be doing the same.
Red flags. They are all over this.
Today I would like to share with you a letter sent to both Global Giving and Pepsi by another Service Dog Organization. This organization has seen first hand the results of “Animals For Autisms” attempt at placing a service dog. Are you listening….?
I am writing you on behalf of the community of true service dog providers for children with Autism and the ten children scammed by Ms. Kaydus (who also goes by 3 other names). I know that it was the intent of your company with this grant to do something good, to make a difference, and certainly not to do harm. I believe you are good people, you must be to offer up so many wonderful grant opportunities for organizations needing funding. I imagine, you had no idea what would happen when you made your grant to Ms. Kaydus, and no concept of what service dog placement truly is, what it typically costs, what is involved, and what breeds are most often used. I am sure her proposal sounded like a wonderful thing, to take 10 puppies and raise them up to be life changing service dogs for 10 children with Autism! What a noble endeavor. I know your hearts were in the right place.
What I am having a difficult time with though is what is happening now. I am certain you have seen the stories on the news; heard the anguish of the families given pictures of puppies that were promised to them as service dogs. Pictures of puppies who did not even exist, at least not as the puppies she was promising for one if the pictures was several years old. I wonder have you seen that she pulled her website from the internet? Have you read about the families plights? Do you know they have been calling and emailing Ms. Kaydus to find out what is happening with no response at all? Do you understand that some of these families have even given their own money to Ms. Kaydus and will never see it again nor receive a service dog as promised?
I believe you are intelligent people. Take some time and google Lea Kaydus and read the many new stories and postings from the heartbroken families. Please pay attention to the letters and emails you are receiving from those of us in the community who make the placements Ms. Kaydus was promising in a correct manner. Do some research. Google Autism Assistance Dog and call the agencies which come up and ask if they would use a Husky as a service dog for a child with Autism or any disability or for that matter, any type of service dog work at all and see what the answer is. I can assure you it will be no. Ask them what the cost is to train a service dog appropriately and you will get answers from $10,000 up. It costs our agency $22,000.00 for every dog we place. Ask the agency if they can raise one litter of 10 puppies and have every puppy graduate as a service dog. I can assure you even with the best breeding program they can’t be sure the dogs will all graduate. We place over 100 dogs a year and must maintain more than 200 dogs to do so with quality placements.
I hope that Ms. Kaydus did not intend to do harm. She loves her dogs and does not look at her dogs and breed with an open mind. I do know though of at least one placement she made having taken $3,000 from the family and placed an under socialized dog, afraid of everything, and with little to no training with a disabled teenager who had serious mental health issues. I am also working with one of the families who was scammed by her. We are providing them a dog and asking nothing from them in return. I wish we had the resources to help all 10 families. Please consider taking this grant you hoped would do so much good for these children and giving it an agency who can now offer hope to these families. I know you would like to see the faces of these children when they meet their new service dogs, true, well trained, quality dogs for the first time. Help us to help these children by putting your money to good use with an agency who can actually do good and not bring more harm with your funds. Building Ms. Kaydus a facility will only bring even more pain to future families who put their trust in her, I know you do not want to see that or have your name associated with such bad press. Do something good with your money as you intended and let one of us who has a good track record bring a smile to your face and good press for your name.
Please know I am not writing this email hoping you will in turn offer the grant to our organization. We have 13 years of stability behind us and while we as all nonprofits need funding, I am not asking you to provide us any funding. My only intent is that you take an honest, open look at Ms. Kaydus and her service and do not continue to support her. I wish she was the only illegitimate agency out there providing poorly trained service dogs to people to gain a buck but unfortunately she is not. If Ms. Kaydus has anyone who is truly a client and not just a friend pretending to have a dog from her offering support, the family has no idea what a quality trained service dog is and what they can do. I say this because I have seen firsthand the type of dog she produces and am dealing now with one of the families whom she threw to the wayside after making promises she now has no intention of keeping. Honestly, they are much better for having been tossed aside because now they will receive a true, quality trained service dog from our agency. Had Ms. Kaydus delivered one of her husky’s to this family it is at best certain that the dog would not have been a true quality trained service dog and at worse that the child may have been harmed by the dog. This breed has not been bred for such a highly specialized field as Autism Assistance Dog work.
I know mine is not the first correspondence you have had begging you not to help Ms. Kaydus bring harm to even more families already struggling to raise a child with autism. Please listen and learn from those of us taking the time to try to reach out to you and educate you on why it is wrong at every level to support this woman. She simply does not have the experience, the knowledge, the education, nor the ethics to be working with these families and training service dogs. Please do some research and if you can find it in your hearts, please help the families she has already harmed.
Karen Shirk, Executive Director 4 Paws For Ability, Inc.
Service Dogs for Children with Disabilities!
253 Dayton Ave. Xenia, Ohio 45385 firstname.lastname@example.org
937-376-2781 937-374-0385 937-708-6677 937-376-2720 Fax
Today’s post will actually be a comment received yesterday in reply to my post No Winners.
I’m so sorry you’re so discouraged of late, but I certainly understand why…it is soul draining to battle corporations, and there are also some aspects of soul drain in raising a child on the spectrum…
I’d like to offer you the thought that when I look back on the experience of raising my own son on the spectrum, Danny, which I’ve been doing now for 25 years (Time sure flies when you’re early intervening!), it seems clear to me that the most difficult aspects of raising Danny were reacting to society’s take on my child and the roadblocks thrown up by others that had to be removed before we could move forward with our lives together.
It sounds so easy, “removing roadblocks,” but it is so hard breaking down barriers to places that wouldn’t welcome him (from mainstream kindergarten to birthday parties); it was actually like sculpting rock with fingernail, and I do remember those days well because your words bring me back…
When you grow old life steals things from you: your eyesight, hearing and waistline to name just a precious few, but one thing growing older offers is the opportunity for wisdom from experience, if you choose to take it…I have chosen to lead a spare life where my wisdom and love are about all I pack away in my little carry on bags when I travel, tucked right next to my packages of gum and paperback novels, and what I know about raising Danny is that the pain of this experience came mostly from blasting my own paradigms into smithereens and then fashioning news ones capable of fitting in all that life raising a child on the autism spectrum can offer…
How much can that be, you may wonder? For it is deceiving; the work done to raise a child with autism, especially when they are young; is sometimes backbreaking, but more often simply patience trying…for one year of his life Danny would enter any room he saw and sweep everything on any level surface right to the floor: like my husband, he hates clutter! If I had turned this into a power struggle we may never have recovered, for in these small battles with our children no one really wins or loses; it was me who had to “offer it up” as my mom would say (or “suck it up” as my husband would mutter), but the point is that on the way to convincing Danny that to live comfortably together he had to tolerate a bit of clutter I first had to convince myself that I needed to let go of the notion that children should obey, or even listen, to my own rules on what to do with cluttered tables or supposedly misbehaving children.
Children with autism force you to reevaluate all your priorities…to prune when you’d rather flourish, sit quietly when you want to explode, take pride in what others assume your ashamed of; it’s a very confusing experience, emotionally and socially speaking, to raise a child on the spectrum…
Society should help, and I do believe we are getting there; babies with autism that shared the nursery with me were routinely institutionalized, when my own son was diagnosed nearly a quarter century ago many still bought into the theory of “refrigerator mother” as the cause of my son’s poor eye contact and difficulty relating to others…we now know autism is biologically driven, but we still don’t understand how much society enters into any child with autism’s chances for happiness (or their families’).
Children with autism are the tiniest and most honest non conformers, and this truth can be what sets you free…to understand the value of not conforming mindlessly in our culture, to fight for our children’s rights in a society still so steeped in prejudice against people with autism that few understand they are saturated with it, to wake up renewed and ready to enter the brave new world of autism when you never asked to be there in the first place…
Did Danny really lose when dealt the hand of autism? I don’t think so. I believe that he is every bit as accomplished as any 25 year old in his graduate program at USC, with his close circle of friends and cozy place in my own heart, but this was just Danny’s particular path and I personally hold no special pride simply because he got into a good school: he is happy and fulfilled, and this was always the main goal, in an important way, the only one…once I gave up wanting my coffee table clutter to remain undisturbed, once I gave up caring what my neighbor thought (the same day, coincidentally, I gave up hating my neighbor), and once I focused on the child before me rather than the child I was wishing I had, I was then not only on the best path for Danny to take to a happy and healthy adulthood, but on the best path for me to be happy once again as well…
This time, as opposed to the rather tense happiness of living up to other’s expectations I dimly recall from my youth, I am happy for what is good and true about myself and my son. Some days this happiness, this tolerance and acceptance of life in it’s raw form, breaks loose and I love everyone I see; other days I stumble upon an event or experience that throws me back to my younger self, gets my Irish up, and forces me to lace up my boxing gloves for yet another round with society, perhaps to spend more time shadow boxing with my own preconceived notions…
Pepsi and Global Giving, are you listening? It’s you and I in the ring this morning and I have decided I won’t stop fighting until you make it right for “the Pepsi Ten.” What makes me most angry this morning is the fact that rather than supporting these families in their quest to swim upstream, socially speaking, and raise their children with differences to a happy and healthy adulthood, they’ve been scammed via their efforts to do so…scammed by an individual, perhaps, but also in the process of being scammed by the greed and anonymity of corporations…
Allison, they are not as powerful as you think. And what’s in your heart for your child? Way stronger than you know…
Keep the faith!
Patty Dobbs Gross
North Star Foundation
Do you remember Taz? Back in the late 80’s Taz was IT. Taz was a whirlish, twirlish destructo machine. Taz had a soft side also, you just didn’t see it very often.
I loved Taz! I had stuffed Taz’s, Taz pillowcases, I even had Taz car seat covers.
Lately in my house, Faith is reminding me of Taz.
It’s a darn good thing I have practice in loving Taz.
If you have been following my adventures so far….
Thanks for reading! You are awesome!
BIG GROUP HUG! Mwah!
So, we made it to the Hyatt, handed the (please don’t run out of gas) van over to the valet and after taking a deep breath…walked inside.
We found the elevator and made it to the right floor. Then we proceeded to try and join the veterinarian conference also taking place on that floor.
A very sweet waiter pointed us to the right conference room.
Walking through those giant, fancy-schmancy doors was one of the scariest things I’ve done.
OMG. OMG. OMG. I can’t do this. I can’t not do this. I can’t do this.
Then I’m pretty sure Alane pushed me inside.
I must have been sporting the “deer in the headlights” look because as soon as Jenny spotted me, she came right over and gave me a hug.
You have NO idea how much I needed that.
Ok, I’m through the doors, still breathing, I have a few familiar faces….
You know the scene when the new kid goes to the empty cafeteria table? Yeah. That was me.
But it’s all good….because I was there!
Now on to the important stuff, why the heck was I there anyway?
The Activision Games For Girls Summit is exactly what it sounds like. A summit of people, mostly moms, getting together to talk about video games for girls. This particular summit focused on 6 games in particular: Lalaloopsy, Zoobles, Wappy Dog, ZhuZhu Babies, Moshi Monsters: Moshling Zoo, Squinkies 2: Adventure Mall Surprize! . I will review the details about each game one by one in upcoming posts. During the summit we learned quite a bit about the positive side of gaming for girls. Some of the facts that stood out the most to me…
- Games provide us with the 4 ingredients that make for a happy meaningful life
- Satisfying work
- Real hope for success
- Strong social connections
- A chance to become a part of something bigger than ourselves
- Games create a positive mindset and making them more resilient in the face of failure
- Gamers spend 80% of their time failing
- We like and trust someone after we’ve played a game with them
- More likely to help someone in real life after we’ve helped them in an online game
- 40% of time on Facebook is spent playing social games
(40%????? Really? Wow, that’s a lot of Mafia Wars and Farmville!)
Video games aren’t just hard, they’re adaptively hard
- Keep people at the edge of their abilities and push them further
- Adaptive challenge is stunningly powerful for learning, according to John Gabrieli, a neuroscientist at MIT.
- Faster reaction times
- Increased hand-eye coordination and manual dexterity
- Increased spatial skills
- Ability to divide and switch attention, pay attention to more than one object/person
Brigham Young University’s School of Family Life study (Feb 2011): girls who play video games with a parent enjoyed a number of advantages.
- Behave better
- Feel more connected to their families
- Have stronger mental health
When I began this adventure about a year ago, I didn’t know where it would lead.
Faith was in need of a new car seat, but due to her size, she had outgrown all conventionally produced seats. That narrowed my choices from 4000 seats, to about 4 special needs seats.
To be honest, not a one was cute, or looked confortable. But how would I know…..I could not find any real reviews.
“Real-life, this is my kid, in my car and this is what I think of the seat and this is what my kid thinks of the seat.”
If I am spending upwards of $2000 to keep my special needs child safe, at least give me more information than a boring line-by-line fact sheet. I want to know what other real moms, of real special needs kids, think of it.
I was never able to find real reviews on any of the seats, and we had to make a choice based on pictures.
That got the wheels turning….
I had been blogging since 2005 but I felt it was time to add more elements in. If I was searching, and failing, to find information on how products work for special needs families, it was also happening to other special needs families.
I did an informal poll on my personal blog, and of my Twitter and Facebook peeps. Would a review blog focusing on how products work for special needs families interest you? The response was overwhelming and immediate.
Armed with that knowledge, and on coffee wishes and valuim dreams, Mommy Rambles began.
I don’t know what I’m doing most of the time, I just try and do right by you, the loyal readers who I hope I am helping. I try to show you parts of our life, good and bad, and try to get to know you, my readers.
What this recap is leading into is….. Today I was invited to, and actually attended my first Bloggity Thingy.
I have severe social anxiety. Awful!
I am scared to drive. Terrified.
When the invite to Activision Games for Girls Summit arrived, my first response was ….no. I can’t. I can’t drive there. I can’t walk into a room with people I don’t know. I just can’t.
But a tiny, probably heavily drugged, part of me said….”You have to.”
If I want to keep Mommy Rambles on the right track, moving into bigger and better things, to be able to help you, my readers, find out the information you need, then I need to take the next step. I needed to step out of my comfort zone and actually start meeting people.
Oh goodness…..what did I get myself into?
The day before the Activision Games for Girls Summit, I received the dreaded call from the school. Faith was sick, throwing up, and I needed to come pick her up. Right Now. And she needed to be out for at least 24 hours.
I managed to get our respite care worker scheduled to cover from 9 to 3. Which is all fine and good, but I needed to leave at 8:45 to catch the ferry…. Hubby looked at his schedule and was sure he could sneak home from 8:30-9
The morning of the summit arrived and my tummy was in knots. I was ready to back out. I felt a major panic attack just moments away. 8:30 – no hubby. 8:45 – no hubby. If I didn’t leave at 8:45 I ran a risk of missing the ferry! Full panic starts now. 8:50 hubby calls…stuck at work. (Deep calming breathes….I can do this. No I can’t.) 9am the respite worker arrives. I literally run out the garage door as she walks in.
Crap, crap, crap….I am late. So late. And WHAT THE HECK? My van is on Empty. My GPS says we have 15 miles to go. I’m not proud of it, but I have driven 20 miles with my gas light on before so I think I can make it to the Hyatt 8, then get gas afterwards. Right? Right?
I stopped by to pick up Alane. Knowing how late we were, and how close I was to a nervous breakdown, she did her best to keep the conversation flowing. She also spent the ride to the ferry terminal talking in the “soft, soothing, everything is fine, ooooommmmmm” kind of voice usually reserved for dangerous people holding weapons.
With 2 minutes before sail time, we got through the ticket booth, flew up to the holding line, and watched the gates close.
We missed the ferry!
We did some rerouting, Google mapping and plain ol’ cursing and came to the realization that the fastest route to get us to Seattle would be to just stay right here and wait for the next ferry.
Okie-dokie. Put in a movie for kiddo, got our electronics charging for the trip, got the car warm and waited. While we were waiting, Alane briefly mentioned something about her battery having died in the ferry line. Whatever…my Scarlett had never failed me before. The conversation was good, the tweets were good, the movie was good, the next ferry arrived and unloaded right on schedule. My anxiety level was waaaaay down. I COULD do this.
Then the movie stopped, then my GPS stopped. Oh nooooooooo!
My battery was dead. In the ferry line. Seconds from loading.
I jumped out of the van and ran to the car next to us. It happened to contain the sweetest older guy. He was so sweet that I want to adopt him and keep him as my grandpa.
He helped us jump the van in literally minutes. Less than 5 minutes later we rolled onto the ferry and were on our way. Thank you Grilled Cheesus, thank you!
I spent most of the ferry ride calming my racing heart and reassuring myself that I COULD do this. Every cell in my body wanted to turn around and just go home, but dang it….I needed to do this to help my blog grow. And make the connections I needed to make in order to keep reviewing the products that my readers are looking for.
As we approached the Seattle ferry dock, the adrenaline started. Would the van start? Would we have enough gas to get to the Hyatt 8? When I reached my van down on the car deck, who should be there? Sweet guy I want to adopt as my grandpa. He wanted to make sure the van started. (Can I please hunt him down and keep him? Does that sound too stalkerish and strange?)
I said a quick Hail Mary and…..Scarlett started right up!
Perfect! This day was turning around! We made it to Seattle, the GPS was locked on to the Hyatt 8, we were only going to be 10 minutes late!
Docked….cars rolling off into the wilds of Seattle….but…our lane wasn’t moving. Dang it people, I have things to do, fears to get over, challenges to overcome…..why are we NOT unloading?
Because the car in front of us broke down.
A multitude of muscular Ferry workers appeared out of nowhere and finally pushed the car far enough out of the way that those of us stuck behind could drive around and off.
Then I was doing it. I was driving in Seattle. Alane did resume her calm speech and helpful directions and…..we made it! We pulled into valet parking, handed over my keys, said another prayer to Grilled Cheesus that my van would not run out of gas while the valet was parking it, took a calming breath and headed to my very first Bloggy Thingy!
Faith receives (or should I say I receive) 40 hours a month of respite care through the Navy. Hubby is active duty and this is one of the newer programs designed to keep me from going bonkers. Our 40 hours are split over 2 caregivers, each coming into our home once a week. Faith genuinely loves both her caregivers and this is a sanity saver for me. Ok, now you have a bit of background. On to the actual issue.
One of Faith’s caregivers has games and toys that she brings with her on her day. She brings her “special” toys to play with the children she cares for. It is a neat routine and gives Faith something special to look forward to. Faith does understand that these games and toys are only for use during the time that the caregiver is here and that they leave with the caregiver. Mostly. Except….
One game. Oh Faith loves it. She talks about, she cries for it. When the caregiver leaves, Faith melts down because she wants it. I mean really melts down. Hitting, kicking, biting, inconsolable melting down. Sometimes it goes on for almost an hour. During that hour I am physically holding Faith to keep her from hurting herself and me.
In other words, in exchange for my couple hours of respite care, I end up with both of us exhausted and emotional messes.
I know what you are thinking….why not just buy her the gosh darn game?
Our caregiver has asked us to not purchase duplicates of “her” games. I get where she is coming from. This is her bag of tricks that help keep the kids entertained while she is here. It’s special and kids look forward to it, and their time with her because they get to play with the items. If parents buy the same items, they lose the magic. They become part of every day life and are no longer special.
I am going nuts here.
Would you buy the game? Just this one game?
Please weigh in!