Autism on a Budget... BROKEN WINDOWS A THING OF THE PAST!!!

Autism on a Budget: WINDOWS

                                 Broken Windows

Everyday for years I have been on window duty... Waiting,watching, and knowing that the moment Amaya breaks another window will inevitably come... Looking on DIY sites trying to find a solution to end this torment... But not finding anything feasible... 

https://youtu.be/G4MW9cMcKHk 

Solution:

A family friend with mad skills is what changed our lives... Made with poly carbonate sheets and a frame that goes in front of our window.. Click the link to see..  

.https://youtu.be/G4MW9cMcKHk

How it changed our lives:

I no longer have window duty.. I can leave the room for a min. without having to worry about another broken window. The longer I'm a caretaker the more I have realized how important environment is..  When Amaya breaks a window it's a several step process. 1.Get Amaya out of the area. 2. Clean and find all the shattered pieces of window. 3.Break out the rest of the glass from the window. 4.Figure out how to pay and replace the window.. Which may include measurements, Patience and lots of days with to much heat or a very cold house..

 

                               Menstrual Cycle A Reality 

                          Something that can't be ignored:

Every month like clock work we wait for "aunt Flow" to visit Amaya... Amaya started at a pretty early age. About 10. At first I was so confused on what to do. Not only the shock that my Amaya (the youngest) in our clan, was now a woman, but how was I to handle it?

The first thing I did was take Amaya to a doctor and ask what kind of options we had. He shrugged his shoulders and said "there are birth-controls that will stop it.. 

I had a lot of thinking to do.. What was not only better for Amaya but easier for her also? There had to be a compromise! She has no other need to be on birth control,what would the effects be on my 10 year old"s developing body? I wouldn't take birth control to get rid of my period.

                                    We Opted Out:

Amaya was still in elementary school at the time. They didn't like the fact that she might start at school, and had no idea how to handle it since it was after all an elementary school.So they decided to move her over to a middle school the next year. Which is another subject and story in itself..

                            What we have been doing

Amaya is pretty regular. We all know when she is PMSing.. Soo Chocolate. We give her some chocolate and sweets during her PMS time to Que her in. Sometimes with non-verbal people we have to give outside the box cues. Sensory cues.. 

When Amaya "starts" I keep her out of school until she is done. I have no idea if she has cramps, but she always gets lazy and cozy after she "starts". Lots of warm baths with lavender oils. Basically girly pamper time. We try to make it a positive experience. and it works! 

                       The hardest Part

 Standing up for Amaya's rights has been the hardest. There has been allot of people that think I should, or try to convince me to put Amaya on meds for this. Allot of professionals that try to take advantage of a subject no one talks about hoping that I am ignorant. Support has been another hard one, in fact I'm pretty sure there will be some autistic groups that will delete this blog when I share it. That's the hardest part. Not my daughter.. 

Diffusing Meltdowns step1

                                                 

                         Making meltdowns easier and safer to handle

There are times you cannot control your environment during a meltdown. Having a room where we can take Amaya to safely calm down has helped us out so much.
There was a time she didn't have somewhere to go and we where constantly following her around and trying to keep her safe yet at the same time we where getting beat up allot more because of this.

                           DIY Calming room on a Budget

Amaya's room has particle board on the walls so she can't punch through the walls... We screwed her dresser into the wall in front of the window,this way she can't throw her dresser or break her window. Also we put some cheap rope lights to help her calm faster. Amaya's bed is a blow up it's easier to clean and when she does throw it, it won't hurt her or us.

This has brought down the assaults and damage.
With autism  meltdowns  you have to think 10 steps ahead, and learn something new everyday.
Below I have posted a video of a failed attempt..

 

Mom Begging for your help!!!

                                Please give Amaya a voice

 As Amaya gets older the less amount of resources and help society has to offer.. I don't think they know what to do with Amaya's age group at this point. Amaya was born in 2000 the start of the up-rise in autism.. Not only does she have severe autism which makes it more of a conundrum but her age group is the first.. The older sibling I suppose..
                                                            

Patching over patched walls..

Resources for problems that we face don't exist, and if they do they are hard to find and out of our personal budget..

How can families make money when their time is spent taking care of another human being?
Things like furniture that need to be protected from urine,feces, and spills..
Windows that don't brake when hit
Locks and storage for people who can climb and have an obsessive nature to take items and make the biggest possible mess.. 
Car safety products for behaviors..
etc..
the list goes on.. I'm hoping for ideas! and lots of them! I'm hoping that at this stage of autism the future generations and families will have it easier than ours. Society has not been prepared for this epidemic..Instead of focusing on Spreading the awareness of autism.. We need to spread Autism.. Our society needs to change our thinking..  If you have a young child or know of one that has been diagnosed you will have quite the challenge ahead.. But your not alone.. Please share this blog.. or the video bellow... Things have got to change!!
Thank you,

Frustrated mama!

Dealing with a runner

Life Without Hands

Years of Frustration:

Amaya is 13 going on 14 she's severely autistic and one of her challenges, or should I say my challenges is her ability to be able to run. By run I'm meaning soon as her hand is let go she's off.. Where to? Is unknown.. She'll just keep running, once in a while she'll stop and look back at me and with mocking laughter continue to run again. Sometimes I'll feel like Alice in Wonderland trying to catch up with the rabbit. Many times we have tried to earn her independence by letting go of her hand and letting Amaya help me push the cart at the store. Not once has that worked out well. After years and years of this game you get used to not having any free hands, it's a life style. You can't shake anyone's hand,because most likely both hands are full, one with the hand of the runner and the other hand with most likely a bribe or "reinforcement" of some kind. I gave up on carrying cell phones around, it's been too much temptation to let go of that hand with the need to see who's calling or texting. Then it got to the point where I was no longer able to pay for the things I needed, Amaya would take that moment to yank and run, we stopped taking her to the store alone ,she was getting too big, too strong and too fast. My husband and I had a breaking point.

Breaking point:

 One day at Walmart she yanked free of my husband's hand and ran off, he stayed with the cart full of groceries to pay knowing the sooner we got out of there the better. So I ran after Amaya. Isle after Isle of mocking laughter echoed throughout the store, I would find her in one isle and she would already be at the next laughing at me. Finally we reached the wine isle. I paused at the end of the isle careful not to move, knowing that with one slight movement she was going to knock all of the wine bottles down. My face red and body tense ,staring at her frenzied and desperately. It felt like hours of having this stare down. A guy walked up behind her. "Can you just grab her hand" I asked desperately. He gave me a blank stare, by that time Amaya took advantage of my preoccupation and ran to the soda isle.Thankfully She ran straight into some guy, in shock by touching another human that she did not know I quickly took advantage and pounced. Eventually I got to the car where my husband had just finished loading with groceries. I guess it wasn't as long as the moment had felt.

The Solution:

When we got home I quickly got into action looking online but could not find other parents in the same boat. It was lonely and frustrating. I took step away had some coffee and prayed. Just then a little light bulb popped over my head, and remembered back to a time where she had a toddler harness. I started looking for harnesses online after not having any luck on Amazon or EBay I googled Adult Harnesses. There I found http://www.childharness.ca/ 

This was an answer to my prayers, and answer to 13 yrs of not being able to use my hands, anxieties of Amaya running off. Ordering was not as easy as I imagined, guess that's how it always goes when dealing with autism, sometimes it can be as unpredictable as it is predictable. My husband (Hans) and I had to figure a way to measure Amaya and for some reason she has a phobia of measuring tape.  For about a week Hans and I tried all sorts of ways to measure that  girl. Eventually after another step back and another prayer, our last attempt worked. During Amaya's nightly ritual of changing she was groggy enough to be measured without a battle.

When ordering I found out that that the harnesses are adjustable and that's why the measurements where so important. That means Amaya will be able to where it into adulthood! Another amazing factor was the accessories. We decided to get a waist attachment so Hans and I could be completely hands free!

The Moment of Truth:

Amaya's harness came quicker than we imagined and to be honest we didn't have a game plan on how we where going to introduce this into her life.
"Amaya" I said, "Do you want to go for a walk?"  " Eeeheh squeal" meaning yes. "We have to put this on you if you want to take a walk." " Eeeehh."  Which I assume meant "ok, just do it." After getting the harness on, we took a step back to admire Elaine's  work. "The woman is a genius" I stated.. Amaya loved the way it felt, the way it made her feel secure and hugged, and for my husband and myself to know that it was made so she couldn't breakaway no matter how hard she tried. Tears streaming down my face, I put my sunglasses on and we took our first hands free walk.

It's unbelievable how such a small thing can make such an impact on our lives, Amaya at times still likes to hold my hand, but there's a big different now, it's her holding my hand vs. me holding hers which gives me a warm feeling that my daughter wants to make physical contact. I can now take her places that has seemed like an impossibility for years. Drowning, running into the forest into traffic, and yes knocking down the wine bottles at Walmart was once a thing in the past.
 People will look at us sometimes comment, or question why Amaya is wearing a harness. But people have been looking and questioning for years without the harness. One thing that I have learned is there will always be judgmental people who either are afraid of what they don't know, or think they know everything. Having these challenges everyday for 13 years has been a blessing on my character. I've become immune to embarrassment, not caring what other people think,making decisions based on my experience, heart, and Gods hints. Every small achievement to make Amaya's life; safer, easier, and happier gives me a feeling that only a care giver could ever receive.

Dealing with autism diagnoses (a mothers view)

 

Embracing Autism

 

 

 

Many of us are told what to look out for and that early diagnoses is recommended. But where not really told as parents what happens or what to expect to feel when our children are diagnosed.



When you just don't have a clue:

 

Amaya at the time was 5. She was pretty late being diagnosed.  Embarrassingly enough I was working with autistic children. Amaya had gone in for her yearly wellness check. The Dr. looked at me and said, "I'm going to refer you to a physiatrist, Amaya needs to get evaluated, she's not progressing." I remember having to wait a good 3 months after she had been scheduled for an appointment. It was a long nerve racking wait. Questions like, what is wrong with my daughter? Why can't she talk? Why isn't she potty trained? Is it something I did? Did I not teach her well enough? What are they going to tell me?

 

Hearing a diagnoses for the first time:

 

The day came for her appointment. I was so exited yet nervous at the same time. Chasing after Amaya the whole time in the waiting room hoping that the doctor would call us in at any minute. He finally did. After 10 min. of being in his room and answering a couple questions he came up with the diagnoses that would change her life and my life. Autism.

Everything had made sense after that sudden word. That's the reason she had been so colicky as a baby, why she didn't like to be hugged or didn't make eye contact, why I couldn't potty train her, why she wasn't talking. The list went on a part of me felt relieved. "she'll be able to be potty trained and talk" I stated. "That's not necessarily true" the doctor had told me. "you see not only are females rarely diagnosed but when they are in allot of cases they tend to have more severe cases." "Oh" my heart sank. The realization of never seeing her get married, driving, hugging me, making eye contact tore at me. I realized I was being selfish, these are things I wanted her to do to make myself look better. I left the appointment and went to work. Coming into work with tears in my eyes and co-workers anxiously awaiting to hear what happened I told them of her diagnoses. The rest of the shift I watched one of the clients with Asperger's in a new light. He talked, he said his opinion he was potty trained. How could two people with the same diagnoses be so different?

Then back to self blame. Was it because I didn't get her diagnosed early enough? Was this clients mom a better mom than me? Will Amaya end up in an institution at 10 also?

 

 

 

 

The Power of Love:

 

It has been about 9 years since Amaya's diagnoses and her whole life of being autistic.

Amaya has come along ways, tho one thing that will be learned from any parent or caregiver of a person who has autism is that every little step is a huge jump. She makes eye contact, lets me know when she wants something, makes choices here and there, Has told me she loves me and sometimes on a very special Amaya occasion hugs me. Amaya is full of life and the majority of the time happy. During these years I've learned more about patience, understanding, life and God. Sometimes something may appear to be unfair and cruel, but ends up being a blessing in disguise. Realizing now that Amaya will do things in her own time and if she doesn't that's ok. My best advice for anyone going through an autism diagnoses for their child or loved one is to just love them and try to think from their point of view.