Sunday, December 21, 2014
For the past two weeks I have had the worst bout of insomnia and it just will not go away. It is so damn frustrating to stay awake for 24 to 48 hours trying to stay busy feeling horrible most the time but sometimes I feel okay. But it is so boring because after being productive and trying everything to keep occupied it gets boring. I do meditate a lot to rest my body and mind that helps. After reading some comments from the Fibromyalgia page on Facebook many of the Fibro sufferers said that it is common to have insomnia with Fibro and after all these years of having it I had no idea, my doctor never told me that. My rheumatologist hardly talks to me anyhow so how could he educate me?
I have been up for over 24 hours and Griffin just got up as I finally start getting sleepy so how could I go to sleep now because he needs me to cook for him? Maybe I can doze a bit and tell him to wake me if he needs me. This is just terrible! My entire body hurts so bad.
If you are one of my Facebook friends don't be surprised if I unfriend you for non-participation as in...if you ignore me then there's no need to be in my life especially not as a voyeur, never cared for peeping Toms. My life is no longer an open book to those who don't bother to show me that they care once in awhile. I have no patience with bench warmers...stay in the game or get off the field! But big hugs out to those of you who care enough to chat with me and exchange personal messages with me as "friends" are supposed to do. To support one another. Isn't that what loved ones do?
Thursday, December 11, 2014
by Cindy Waeltermann
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
But what they don’t know
And what they don’t see
Is the joy that we feel
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……
Tuesday, December 09, 2014
Now I am able to actually sit in silence and allow my thoughts to wander and whether they be good or bad it is okay. They all teach me something about myself that I have been running from all my life, living in fear and not allowing genuine love in my life. To actually experience pure joy and appreciating each moment as it happens instead of being lost in thought as my life passes me by. I can sit and feel the pain from my past, from my childhood and not allow it to create fear but instead helping me grow and move past it. Through reading several books I have learned so much about myself and about the process of my journey, how I need to feel pain in order to grow in order to feel joy authentically.
My anxiety serves it purpose and as long as I don't ignore it by distracting myself with mundane tasks then it talks to me and the more I listen the more it subsides. I just breathe through it and stay in the moment being fully aware and mindful. I don't allow myself to be thinking of what I should be doing or what I should have done but to relish in the moment and just BE.
I have taken a break from talking on the phone and socializing is limited I have to do some for Griffin's sake but this is MY time, the time that I have never taken for myself. And I am not being selfish only nurturing to my spirit and body. The impetus for all this was that my health had gotten in really bad shape and my stress levels through the roof and I realized finally that I was the only one responsible for making the changes necessary to end the nonsense and stop putting up with other people's garbage. I like the saying, "When you realize how valuable you are then you will stop giving people discounts." And that is how I am living my life now and from now on. I deserve to have quintessential joy and peace in my life and to fully the life that I was meant to live with Griffin. To fully enjoy every precious moment with him and to not let it pass me by.
I truly believe that my purpose in life was to be a mother to Griffin and not just a mother but the best mother he could possibly have and in order to do that I have to be devoted and present...to not be consumed by negativity and distractions. I can't allow others to form opinions about my parenting and about my child in which influence me and my decisions. I am following my heart, my intuition, and pursuing that which fills me up both spiritually and emotionally helping me to be the compassionate mother that my child deserves to have. Not only am I living in compassion for him but also for myself because I have realized that I don't need compassion and validation from others because I can give it to myself. Besides, Griffin is the only person who truly loves me unconditionally and accepts me fully for who I am. And in return I shall give that to him and try to teach him as much as he has taught me on how to live authentically.
I have lived my whole life up to this point trying to live up to others' expectations of me and trying to make them happy doing what I "should" do rather than being true to myself and my own feelings. I now know that I have the God given right to do what is best for ME. I don't "have to " do anything that doesn't feel right or that brings me peace and happy feelings. I am not obligated to make phone calls or send cards or have Griffin do something for someone else just because of what they might want. If I need time to take care of myself then I will not feel guilty for it. I have to live the way that I want to live and I will no longer have regrets for not being true to myself and making choices based on my intuition and best judgment. For those who had the chance to validate me when they had the chance it is okay because you are now free from that expectation that I had of you. My needs have changed and I am at peace with my choices.
Saturday, December 06, 2014
Life is a constant evolution of changes and seasons on and on therefore it is time that I move on and finally live in freedom from being judged as if I am a bad lazy parent who doesn't have any idea of what she is doing. As if I haven't been at this for almost 13 years, done my homework, been to all the therapies and doctors for his entire life. No more is he going to be judged for not living up to stranger's and relative's expectations. No more because my new life begins NOW and I am a mama bear and will not stand for it!
This mom has said it in her own words at: http://www.laurencasper.com/2014/11/20/the-hardest-part-of-autism-and-it-isnt-him/ as she describes that the hardest part of autism is not her son but other people and their judgments, their criticisms, their remarks , and advice. It is exhausting putting up with the daily BS from people and no one knows until they have walked a mile in our shoes.
I am not tolerating it from anyone anymore stranger or relative! The seasons are changing right now!
Tuesday, December 02, 2014
Relish in all the good emotions and focus on them when you have them making them last as long as you can. But don't expect them to last forever because not every day is a happy one and we should cherish all that God has blessed us with which is a spectrum of emotions sometimes all within one day. This is perfectly natural. It has taken me 50 years to realize all this and I didn't learn it by just existing. I learned through reading and reading by taking an interest in being a better person so that I could be a better mom to you.
We have both grown and progressed a great deal during this past year. I have eliminated negative influences from my life and I am taking control of my environment by limiting my exposure to those who I have to have contact with but can be depressing and not supportive. I want you to feel empowered to feel in control of your life so that no one can ever take advantage of you and make you feel less than human. Griffin, you are a gift to the world especially to me and anyone who doesn't appreciate you for who you are is not deserving of your presence. I have gratitude and quintessential joy for having you in my life and the more I learn about you each day only brings me closer to you strengthening our bond that no one could ever break.
You have taught me more than I have taught you and I will let you know how much I love you by showing you through my assertive actions on your behalf until the day I pass from this earth. I will be your advocate as long as you need me and respect you as an individual with dignity and honor. Recognizing your talents , skills, and intelligence and at the same time appreciating that you have deficits and that you require help and support, understanding, and compassion. I will stop at nothing to stand up for you so that you can live a happy, natural, fulfilling, content way of life. Living life to the fullest! I love you buggly!
Friday, November 14, 2014
I have been taking him swimming almost every day and it for three purposes, one because he loves it so much, two because it is excellent exercise, and last but not least...it is the only thing that I have found to motivate him to get him to do the work for homeschool and unschool during the day. Now everything is so much easier.
My health is much better as I am doing yoga every morning eating healthier and little by little my health benefits are showing up. Right after I exercise my blood sugar and blood pressure go down. Eventually the benefits will be greater and I will be able to do more each day.
Tuesday, November 04, 2014
Due to the scrutiny that one comes under when one decides to homeschool because the very first thing that people remark is, "Oh but he won't get to socialize!" This is the most common misconception of homeschooling for so many reasons. In fact, children who are homeschooled socialize daily with all age groups even their own peers. Children who homeschool learn more living skills at an earlier age than traditional schoolers because we are so active and do more of a variety of things than those in school. We have exercise almost daily such as swimming, Occupational and physical therapy, exercise out of doors, we have math in daily skill building such as paying for things at the store, measuring in cooking, measuring our growth of our bodies and its parts, keeping track of days months and years etc...we read books at home and at the library, follow directions on boxes for cooking, etc..all these things and so much more than this is done on a daily basis that we didn't do when he was in school. He socializes with adults and kids alike in stores , we are planning on going to church which has a special needs Sunday school, we are going to go to autism groups several times a month, and homeschool groups have specific times and days in which they get together for activities, study, and play. People just don't stop to think that if homeschooling was so bad for kids then why would parents do it? To deprive their children of learning in life or to be lazy???? Pardon me but homeschooling parents are far from depriving their children because we do it because we want the BEST for our children and conventional schooling was either hurting our children or not giving them what they needed. Griffin was having such severe anxiety that for several years he wasn't sleeping at night because his anxiety about what was going on at school was keeping him awake then he would also get up in the middle of the night causing him to sleep half the day away missing most of school. Now he sleeps just fine with a few days now and then getting up super early because I put him to bed too early but he makes it through the day just fine. He now has zero anxiety and functions far better and has no meltdowns any longer. And homeschooling is far from a parent trying to be lazy! Quite the contrary! Homeschooling takes a lot of work and dedication. But we do it because we love our children and want the best for them not because we are avoiding anything. People who think this are just plain ignorant and do nothing to improve their minds or make an effort to broaden their minds. Frankly I have no patience for such ignorance!
Before I work myself into a frenzy, I must briefly add to a reader who has been interested in publishing an article on my blog through her site: Healthline, I have every intention in publishing it but my health has been quite poor and I just haven't sat down long enough at the computer to read the article then transferring it to my blog. Sorry but perhaps soon.
This is where I transition to my least favorite topic of my poor health. In July my blood pressure spiked way up and has not gone down since regardless of three medications one of which I take twice a day. I had been feeling really really sick for such a long time that I didn't take my health seriously because I was so focused on taking care of Griffin . Not only that but I attributed my extreme fatigue and other symptoms to my Fibromyalgia so I just suffered. To make this short I finally had my blood sugar checked and it was 384, got that under control with a new medicine yet my bp was still high so the doctor has ordered an ultrasound on my renal system because she thinks that I might have Renal Artery Stenosis. I don't know if that is it because I don't know if it causes pain or not but the big C word came to mind too. Not scared though just want to know what it is so that we can take care of it.
God is Good and We are Blessed!
Monday, October 27, 2014
I plan to take Griffin to future meetings of this teen Asperger's group because he had so much fun and it was great exposure for him. The guy who organized the whole event is so nice and inspiring as someone on the spectrum. I predict that great things are going to happen in our immediate and distant future.
Thursday, October 23, 2014
Thursday, September 18, 2014
First of all it was a beautiful day for a visit to the farm and we were feeling great. The drive took about thirty minutes and it was so scenic, we passed many farms, equestrian centers, produce stands, the air was so clean and exhilarating making us filled with excitement. This trip was exactly what we needed for a field trip for our homeschool/unschooling agenda.
Immediately Griffin located the baby chicks and I must say that it was his absolute favorite part of the entire trip because time and time again he kept gravitating back to them each time attempting to pick up the nimble little buggers. He wasn't able to catch them so I wasn't concerned about him hurting them but he sure had fun trying. We also saw probably around a hundred young turkeys who ran to the fence because they thought that we were going to feed them. Griffin got spooked because the flexible fence moved while he had his hand in it to touch the turkeys and wanted to leave. But before leaving we had seen calves and goats who were climbing up in the rafters of the barn.
I think that by the time Griffin wanted to leave he had gotten tired from our hike up the hill, getting sweaty, and he was hungry and thirsty eager to go to the farm store below. I picked out two bags of apples, one of Rome (one of my all time favorites) and Cortland which is new to me but I was interested in trying them because they were described as sweet but mostly tart. I love tart! Then we went inside the store and I was so impressed. I had to look at everything.
I bought beef brisket from a grass-fed cow, two free-range chicken frames for homemade chicken noodle soup, one chocolate farm fresh milk for Griffin, and the apples which were sold by the bag instead of per pound. All in all the total was surprising considering how big the brisket was and how many apples we got.
We hurried to the car to rest on the way home while feasting on our wonderfully fresh, crisp, and juicy apples.
Griffin went to OT later and cooked with Meagan. They made tortilla pizzas and she explained that perhaps Griffin lost interest in cooking/baking with me at home was because it was too complicated and/or it took to long to get the finished product.
We haven't officially started homeschool because I have documents to fax yet but we are working on some things out of books that his teachers had given to me in the years past that have been really good for review and to calculate where he is in math and other areas at least until I get some funding for a proper curriculum to follow. I called to find out about the annual test that he has to take and she said that it will be up to me to determine which grade level that he would test on.
I have found a great deal of resources on unschooling and attachment parenting that I will write more about in my following posts.
We are blessed!
Thursday, August 28, 2014
To live in the past or to worry all the time about the future is just a waste of time not to mention worrying about how things Should be instead of what is really happening and accepting that as reality. We don't live in reality when stressed out about yesterday, what someone else is doing or has, what someone is saying about you/judging you, or expectations of how things should be in the moment rather than what really is and loving it for what it is. Because even the times that we think are the worst can turn out to be a blessing in disguise. If only we stay grateful for our blessings focusing on them rather than what we desire or think we need especially material items. Perhaps you have some kind of illness chronic or even terminal, there is no reason to disregard that but at the same time there is still plenty of positive things, people, and blessings in one's life.
I say all this because not once have I felt that Griffin's autism was anything but a blessing and that no matter what he does or how he behaves, he is my gift and I appreciate EVERYTHING about him! Even when he was hitting me, having huge meltdowns in public, and I especially appreciated him even before he was talking at age 5. It's those challenges that make all the milestones and accomplishments that much more beautiful and precious!
My Fibromyalgia is not a curse in my perspective, nor is the PTSD that I have had for most of my life, they are merely challenges that I need to overcome and I know that I will because I am going to persevere. What I like to say is that, "Everyone has challenges every single day and it's not how bad they are it is just how you play your cards with what you have been dealt". I used to wallow in my sorrows making every attempt to drag down everyone with whom I came into contact down with me but gone are those days and I do nothing but to bring sunshine to each person whom I meet. And ever since I made that conscious decision, I have had so many compliments each day about how I make people whom I come into contact with on a regular basis, their days happy when they had sometimes otherwise been boring or bad. This just gives me the impetus to continue to smile and cause others to smile and think happy thoughts. I stopped complaining even if I feel bad because after all who wants to hear about all the bad stuff happening in your life?
I believe that deep down inside we all have the capacity to be happy because happiness is a CHOICE, it doesn't just plop down in your lap one day and say, "Here I am!" We choose to happy or miserable by the thoughts and words that we chose and whether we choose to live in the moment or not. So be mindfully aware of your body, your thoughts, and your surroundings at all times it takes some effort but the payoff is sooooooo worth it!
Monday, August 25, 2014
Tuesday, August 12, 2014
To Anonymous who commented on my last post, or rather about the comments that have been left, for Griffin's safety and mine I had rather not post our full names but if you would like to e-mail me please go to my profile and you can do so from there. It would be nice if I knew your name too by the way :) Cheers!
Griffin got me up at 2:30 a.m. bright eyed and bushy tailed he was but not me. It took me a long time to struggle to make coffee, quite watery the first try and by the second try I made a very strong cup of java. However it didn't help and at 5:00 I had to take a nap for an hour. Then at 7:45 we had to go to the doctor for him and he fell asleep on her table as she was examining him. Now it is 10:00 a.m. and he has been lying on the floor where he plopped an hour ago. I just gave him a blanket and let him be. Cutie pie.
Yesterday was quite a busy day indeed. We had to go to my foot/ankle doc at 10:30 a.m. because I got an infection in my ankle due to a small cut on my heel. I get infections so easily since I have type 2 diabetes he told me. I have to be more careful about giving myself a pedicure from now on. I had exfoliated the callus from my heel and inadvertently exposed the crack/cut on my heel making it susceptible to infection. And since I go barefoot at home well, let's just say that it just wasn't the smart thing to do.
I have been doing affirmations to fill my mind up with positive thoughts and drown out the intrusive thoughts of negativity and memories of my past traumas. It has been so fulfilling to actually see the manifestations of the efforts that I have put forth. The most recent being a significant amount of money via check that simply appeared out of the blue. I nearly just threw it away as it appeared to be fake when looking at it through the envelope window as so many gimmicks in advertising try to make them seem real so that the unsuspecting recipient falls for it. But low and behold when I called the phone number on the check it verified it as a federal tax refund but the real mystery was that I have not been required to file taxes for years now. I am calling child support division in Alaska to see if it was from Griffin's father's taxes to pay towards the enormous amount of back pay that he owes. Doesn't matter really because I am just grateful for the blessing no matter where it came from.
LIFE IS GOOD AND WE ARE BLESSED!!!!!
Friday, August 08, 2014
My "Schmookie" as I call him got me up at 2:30 a.m. and it took me quite awhile to wake up but once I did we had a lot of quality time together all day long. I helped him do his exercises that his PT taught me to increase his flexibility because his core is weak causing a chain reaction throughout his entire body especially with low muscle tone and very tight muscles. She said that if he were to become more flexible then it would not only increase his endurance but in turn strengthen his entire body increasing overall health. So we are doing them together because I can use it too.
I have not only been writing more in my book but I have decided to write a few articles that specific audiences might find interesting and submitting them to publishers of specific magazines. I am so excited because I have been doing affirmations on success and prosperity and already I can tell the difference in my motivation to succeed and be better off financially. Affirmations are just short sayings that focus on your intent and it has to be specific and concise. Such as, "I am successful in my writing endeavors that give me financial prosperity." or "I am healthy in body and mind in every moment of each day." It doesn't work if you use negative words such as, "I have no pain". Because your mind will focus on the word pain and then you will find that you actually have more. That is why when people complain it actually makes their illness and suffering worse. One reason that I have little tolerance for those who complain or talk about how sick they are because it is self defeating, negative, miserable, and I know that it can be helped. Everybody has something or more to be grateful for and we need to focus on that saying those words out loud each day in order for abundance to continue.
We attract what we speak and think...words and thoughts are very powerful, don't underestimate the power that you possess. Those words and thoughts can easily sabotage your very happiness that you desire and strive for. Or are you stuck in your story in misery? It much easier to have fun and enjoy this existence rather than having hell on earth.
Wednesday, August 06, 2014
Well, writing just comes easily to me. Once I sit at the computer or have a pen in hand it just flows because I have so many thoughts that I need to convey and have for my "immortality" in memoirs, that I can hardly keep up once I get started. Usually I constrain myself when writing on my blog as to not give away all the tales since I am writing a book and need to save all the best for those interested in our life story in paperback or online.
It is my hope that I will have the courage to complete my book and I have all the good intentions but must first face my demons from my past in order to put them down on paper and not have worse PTSD symptoms than I already do,( I am working with my new therapist doing EMDR for that very purpose). This is why I dedicated my blog to my wonderful son and in attempts, some more successful than others, to keep track of milestones and memories of his progress and happy times (a few challenging ones too I might add).
I guess that the best answer is, for my reader, to have a quiet time without any distractions so that you can clear your head of the noise of other thoughts bombarding you. And if you feel blocked and nothing is coming to you then probably you are still thinking too much actually. Trying too hard perhaps. Just stare at the paper or computer screen and simply focus on the topic(s) that you want to write about and the ideas/words will flow.
Since starting meditation I have found that if I meditate on just two short words SO on the breath IN and OHM on the breath OUT...but only think them do not say them aloud. All one has to do is to pay attention to the breath even when thinking the two simple words. As it is done for only about ten minutes a calm and relaxed, even a feeling of being refreshed, will come over the entire body and the mind causing a more mindful sense of the moment/present. I have found that I can even meditate while walking and doing other things because all it takes is being mindful, focusing on the breathing IN and OUT slowly and clearing the mind except for a mantra of the two sounds/words. Just staying in the moment not letting oneself become distracted by thoughts of the past, future, or needless worry. It is so incredible and so easy to do!
Thank you for your question and please anyone else who wants to comment or has a question then please do feel free to let me know. If you don't want to make it public then you can contact me via e-mail if you go to my profile.
Have a wonderful day everyone!
Saturday, August 02, 2014
I look forward to getting comments again because it really brightens my day to see that there are still people interested in the blog.
I plan to spend more time reading all the blogs that I follow of my dear friends because I have really missed you all.
Griffin and I laid in the grass yesterday watching the clouds go by and figuring out the shapes and it was so much fun, he really enjoyed it. I gently told him that it is important that we spend less time with technology and more time doing the free and really important things in life such as being outdoors and enjoying nature. That it is essential that we spend more time playing together using our imagination and laughing together. And sure enough he has complied without any complaints. Now we snuggle together more and laugh so hard and he doesn't even miss the TV, computer, or not having a smart phone anymore.
Life is so good and we are so blessed!
Monday, July 28, 2014
I can't believe that summer is almost over and school will start soon. I sure will all the fun that we have had over the summer, I am kind of glad that Griffin didn't go to camp ...that is my selfish self since we have laughed and played so much.
My meditation is still continuing and it has helped me transform into a much nicer and much more compassion/understanding person. I guess that you could say that I am proud of the happy positive person that I have become.
Saturday, July 19, 2014
Saturday, June 07, 2014
I just put this together, I need to make a more current one but have yet to print out the pics.
Hopefully you can see the details in this. Sadly the only thing missing is a pic of my mom which I couldn't locate but I will be sure that she is in the next one. I will be doing it soon.
This one has my dad, Abby, our kitty Pisgah from when we lived in Alaska, my brother (God rest his soul), and my parent's dog Jade ( God rest her soul). A couple of me and one of the ex husband, Spiro's (the love of my life who was present when Griffin was born). He and I lost touch..he is in Greece now.
Griffin spilled milk on my/this brand new phone and nearly ruined it. I got upset because I cannot afford to replace it and caused him anxiety which he gets so very easily these days....so I am taking him swimming so he/we can decompress.
We are both looking forward to summer break. Busy schedule ahead.
Monday, May 19, 2014
Saturday, May 03, 2014
Yesterday I finally found the courage to take Abby our retired service dog to the shelter to be euthanized because she has been in a lot of pain for quite some time. She had hip dysplasia or arthritis in her hips because it was difficult for her to walk and to get up and down, especially in the car.
I cried all day but when I told Griffin he took it very well saying, "I knew today was the day that Abby died!" I didn't tell him that I had her put to sleep only that she died.....I guess that when he is older I will explain it to him because eventually he will read this blog and besides, he deserves to know the truth.
Abby was about 2 years old when we adopted her around 10 years ago, Griffin was only 2 years old himself.
I got her because I had noticed that when my friend
Nina`s dog was around that he didn`t have self injurous behaviors like banging his head so then I went to the shelter in
Anchorage and discovered our angel. She was named
Valentine but I wanted a name that was easier for
Griffin to pronounce. Since then, for 9 years,
Abby had litterally gone everywhere with us....on trains, buses, in the cabin of the airplanes, cars, and always accompianed us in the stores. She was so loved and a big part of our family bit
I just couldn`t let her suffer anymore. I felt so selfish keeping her alive.
Her suffering has ended, she lives on in a better place, and forever in our hearts and memories with great fondness.
We also got a new cat from the shelter named" Link". He is a 5year old orange tabby and very affectionate. Griffin loved him immediately! I don't know how to add a second photo since I am doing this from my phone but will add one in the next post.
Dot is tolerating Link and Link is really cool about Dot, I think they will be buddies eventually.
Tuesday, April 29, 2014
|`I couldn't get this picture rotated because it was sent like this and couldn't be changed.|
But here is Griffin next to one of his all time favorite mascots.
Thursday, April 24, 2014
Griffin wanted to dress up as the late Colonel Sanders of Kentucky Fried Chicken because one of his most favorite things to do is to draw, search for online, and collect advertising icons from days past.
So last night he thought that he would take it one step further and look like the real thing by putting white paint in his hair.
We are still doing intensive in home bit we don't really need it anymore because things are going so well. His behavior is stellar and he is sleeping much better as long as I don't put him to bed too early. He still goes to school late but the teachers and I have that all worked out.
Monday, April 14, 2014
Last weekend Griffin had a sleep study conducted and it was miserable! He patiently allowed the technician to place all the electrodes all over his head and body but he was so uncomfortable that he couldn't sleep all night. On top of that he was scared because he was in a strange place and they wouldn't allow me to sleep next to him.
By the time we got to sleep in the wee hours of the morning the tech came and woke us up at 5:00 a.m. Griffin took a shower to get the goop off then went back to sleep, I wasn't able. I got him up at 10:00 for breakfast he fell asleep on the way home then once home, we both fell asleep until 2:00 in the afternoon.
Not only was that night miserable but it took us several days to catch up on our sleep.
Saturday, March 29, 2014
Friday, March 21, 2014
It Is My Goal As Griffin's Only Parent In His Life To Teach HIm To Love HImself For Exactly Who He Is.
Friday, February 28, 2014
He has been having a difficult time with transitioning from going to school late these past few months because actually he prefers to go to school early and sleep in school but not his teachers. They prefer that he stay home and sleep it off then come in but his intensive in home worker says that the teachers can't say that so....I don't know? I will have to check into it. I don't know what is best for him. I really don't think that sleeping in school is a good idea, it doesn't send a good message yet going late doesn't either. But he goes back to the doctor Monday and I am going to recommend that he goes to have a sleep study because I think that he has sleep apnea.....I really think that is what is waking him up at night especially since he is a mouth breather. He has already had his tonsils and adenoids out but he still snores.
Since we reduced the Risperdal his behavior has become a bit more aggressive but not too bad, not as though it is intolerable. He just screams a lot....even at school and usually at the other autistic child. He just gets frustrated with his peers because they talk to him too much.I really get the strong feeling that one certain teacher doesn't care for him, doesn't try with him, and certainly has no clue about autism because for one thing she walked out on an IEP meeting saying that Griffin just didn't apply himself......AAARRGGG!!! She sent home homework that was far too difficult for him after I told her so, she ignored my requests for a parent/teacher conference etc..Now Griffin is saying that he is afraid to go to her classroom because she won't listen to him and that she doesn't understand him. When I ask about it, nobody wants to address the issue.
Griffin and I don't like to talk very much or answer many questions, we like our space and quiet time. A lot of people take it personally but that is usually because they aren't autistic and just don't understand that way of thinking so we have to understand them and realize that they mean well ,most of the time even when they hurt our feelings.....we have to learn to not take it personally ourselves to maintain some dignity and self-esteem.
We have to be proud of our accomplishments and not expect others to give us kudos and atta-boys, for having done something that we are proud of because that should come from within...not even from a therapist or doctor or friend. Just a sense of accomplishment, joy, pride, and rejuvenation of the spirit that I've done something once again or something new that makes you feel alive, stimulates the intellect which makes me happier than all the money in the world (I know because I've had plenty of money before to do with what I pleased), Feeling talented and appreciated is like the highest compliment that anyone could pay me, then to tell me that I can write about any three subjects that I want to???? How flattering is that? I am so excited to write for Answers.com/Psychology I don't have that article completed yet, not for a week or so but it will be very interesting I guarantee that it will be about something you have probably never heard of yet it is quite common...all around you. Later I will be writing about autism as well after I write some articles about psychology/mental disorders which really intrigue me. But of course autism is what I know the most about, have done the most research on, had the most experience with, and that is where my heart lies.
My last article was about anxiety and here is the link for it: Fight or Flight Response: Anxiety
I am going to have to write to the support staff because part of it is illegible so please bear with me, and read it anyhow because it is only a small part. I would really appreciate your feedback.
Sunday, February 23, 2014
Griffin came up with the title of the post. Isn't it great?
Griffin and I are finally sleeping!!!! I told the doctor what was working as far as the medications go, and she finally agreed with me that he could tolerate them and if that is what worked to get him to sleep through the night and to get up on time for the bus then go for it. Now he is not sleeping in class either so that is wonderful.
Not much else is going on except that I have been writing a lot more, I submitted my second article on anxiety to Answers.com. It's at: : http://depression.answers.com/anxiety/fight-or-flight-response-anxiety if you just click on the link it should take you straight there. So far nobody has left any comments which is a bummer! Writers always want feedback on the opinions of their work, after all the work is being published for the public and for their information/education....why not let us know how we are doing?
Everything at home is copacetic because Griffin and I are getting along just great, there's no worries and I am as happy as a clam doing what I do at home alone only going out when I need to or desire to, I don't go out and do things just because someone recommended it and put pressure on me. I have Aspie friends now who understand me and talking to them for a short while is all I need for company......other than Griffin of course.
Some people still won't believe that I have Asperger's and still believe that I am bipolar but that is not my problem. If I am to be judged by a neurotypical who doesn't even try to understand me then it is their loss not mine. I am going to live my life as I see fit without unsolicited advice on how to raise my child in which they do not understand either and Griffin and I will live happily ever after.
I don't appreciate being lied to and treated as though I am a child, I am a very intelligent individual who has always taken care of myself no matter how tough the situation.....more than you care to admit. I know what is going on with your lies and deceit but I play dumb just to be a mimic as I have lived my whole life for your sake not mine. It will not last this way because I will not have my intelligence insulted.....JUST STOP IT and leave me alone. I am so tired of playing your games, it is not genuine to me and if you don't believe in me and my son then there is no place for you in our lives. I AM NOT DEPRESSED OR BIPOLAR, I HAVE AUTISM!!!!Why can't you admit that?
You know who you are!
Tuesday, February 18, 2014
The latest news on the home front is that we went to see Griffin's psychiatrist yesterday and it was quite productive, we made some medication changes but after last night I found out that it wasn't going to work. The doctor took away the Clonidine because I needed to add Tenex in the afternoon for his ADHD because his behaviors were getting out of hand. She said that the drugs were so similar that it wasn't necessary to have them both on board. Well.....I tried just the Tenex in the afternoon and it worked but come bedtime it was just melatonin, Risperdal .5mg, Depakote 500 mg and that was all hence NO SLEEP! He was hyper. I fed him protein and had him lie down in the dark quietly to no avail. So I had no choice but to try one Clonidine....45 minutes later still awake so it was 10:00 and I thought this is ridiculous, I am giving him the other Clonidine and within 15 minutes he was fast asleep.
He went to school today for the first time in awhile, he had told me in confidence that he was scared of going back to school because he was afraid of doing science. He said that his science teacher Mrs. Boggs, who I think takes no interest in him, doesn't understand him and that she won't listen to him. Griffin said that the work was too hard and the math too. These are his regular education classes (inclusion classes with his peers). He obviously does not feel comfortable in there but in the IEP meeting the staff did not mention a thing about Griffin having any problems in his classes and I am not aware because the (bleeping) teachers won't communicate with me on a daily basis and let me know what is going on with him. I don't know if he is sleeping, eating or hungry, acting out or having calm behavior, he doesn't bring home school work so I don't know what kind of work he does in school or even his art work....NO REPORTS. So they say that they are going to put it on the IEP when we were in the meeting but LOW and BEHOLD .....there was no such written words as: we are going to communicate to mother on a daily basis through e-mail.....on the IEP..!
So now we are going to have to have yet another IEP because that document follows him to his next school next year and I want to know what is going on with him during his day for many reasons not just about his medications and behaviors but for his emotional well being, his educational needs. I need to know if his needs are being met because if the school is not doing it then I have to consider other options.
Today I have to call the doctor and ask her if it is okay to go ahead and give the two Clonidine since those two were the magic bullets. I finally got sleep because he didn't wake up in the middle of the night so I think that I got about 7 hours since I was able to take my medications for sleep. If I don't then I only sleep about 4 hours.
Please leave comments here and/or at Answers.com and let me know how I am doing. Thanks for dropping by and reading for the first time or for following me....you are greatly appreciated!
Saturday, February 15, 2014
Sunday, February 09, 2014
This is all after an incident of Griffin actually hitting a doctor who subsequently refused him treatment saying that he was too unstable and that if he didn't go to the hospital immediately that he wouldn't treat him until he became stable. Well, Griffin had been waiting 2 hours patiently with little to do, in fact I was proud of him for not having a meltdown sooner but finally after the PA expected him to sit quietly for too long.......he began to pace then he ran across the office building straight towards the doctor who shusshed him and told him "NO!" (Big mistake!) that was his trigger and Griffin made a bee line and hit him right in the arm. I can't say that the doctor deserved it but he certainly should have known better as an autism expert not to trigger a child with autism who is having a meltdown and make things worse. Then he had no compassion for him and refused treatment when if he truly cared he would have seen that it is children like Griffin who are the ones who need the most help right away. I was so frustrated, we just left and I called the intensive in home team for support.
Now Griffin is stable as far as his behavior goes but we just cannot seem to create a balance between his waking time....which is very short and his sleeping time which is taking over his life. We are weaning him off the Risperdal (thank goodness) his appetite is finally normal again. He is on Geodon now which is for his psychosis and to help him get to sleep which is a big problem, he is on melatonin as well but the problem is he cannot GET to sleep at night then he wakes in the morning eats, stays up awhile then goes back to sleep until about 1:00 p.m. or even later and there is no waking him.
It is truly a conundrum! I am in a fog about it and frankly I believe that everyone is as well. I have insomnia really bad and have to take medication for it or I will stay up for days and my dad has it too. I know that in Aspies it is pretty common to have insomnia or rather should I say in auties too (autism individuals).
I wanted to add that I am starting a new Facebook page that just has Aspies and Auties on it and things connected to it such as support groups, links, and pages etc...in order to reduce the anxiety in my life and to find the support and help that I need and desire from those who care about my sensitivities, those who understand that I have feelings too and who treat me with respect as an adult who is a responsible single mom of an autistic child giving me credit for that as well. I have already found that in these people, they listen to me instead of me being the one to always be the one who listens. I find great comfort in someone showing interest in what interests me, perhaps something that we may have in common or even if she just takes a moment to be genuine and honest. This is what I appreciate in Aspies, honesty and being straightforward. I am starting a new life and endeavor to embark on new beginnings, a new journey.....and it is exasperating!
Tuesday, January 28, 2014
Griffin's Recent Appointment With His New Doctor & "Avonte's Law" Tracking Devices For Autistic Children
Yesterday, Griffin, his Intensive In Home worker, and I attended a polycom conference with Dr.Vincent who I now admire and think that she is the bee's knees! She was so good with Griffin, so patient and understanding that he was becoming impatient, and she praised him for it as she tried her best to make the appointment as quick as possible......yet very thorough. She went over his history, asking all the vital questions and answering all of my questions satisfactorily in a timely manner. Griffin's worker only spoke up when he felt that perhaps the information he had was pertinent and germane to the topic at hand.
In my hurried exit out of the apartment with Griffin and Abby (the service dog), I had forgotten the questions I wanted to ask but between us we decided that he would start with a new anti-psychotic/mood stabilizer: Geodon, which I have taken before. In order to titrate off of the Risperdal which in my opinion is one hell of an EVIL medication causing nothing but problems! It raised his triglycerides, his weight (he was becoming obese) due to the fact that it made his appetite so ravenous that I couldn't keep him satisfied with food day/night, and it caused him to have to start taking Metformin for his blood sugar because he was becoming pre-diabetic and that is without eating sugar (she even said that he had Gynacamastia "male breasts" from taking it so long) .
So, hopefully the Geodon will mellow him out, stop the hallucinations, and balance his appetite again so that he can remain at a healthy weight. Then when he does begin exercising on a regular basis, it won't be so difficult for him and unpleasant.
Griffin had perfect patience, I was so proud of him....he didn't even get upset after we got out of the building which is what he usually does. He has his moments of triumph when he deserves a great deal of praise for his behavior and I told him that if he continues to have good behavior then I will pick him up on Friday from school and that we could go to the lake. After all it will be his 12th birthday!!! He wants to go to Fun Depot Saturday. I think that it would be a blast for us to go play together, besides we are best buds and we are super close to one another regardless of the spontaneous outbursts of bad behavior. It is all part of having autism, the brain is simply wired differently and oftentimes we get sensory overload and frustration takes over and self control goes out the window. But fortunately, it is quick and over in a matter of minutes if one knows how to cope when it rears its ugly head.
We have got to teach Griffin the skills now on how to cope with his anger/frustration with objects and people so that once he is in middle school and out in the general public then he will be able to socialize (only if he wants to) and focus on the task at hand while tuning out all the other sensory input that is distracting him. This is the concept that is so difficult for neuro-typicals NT's to understand is that our senses are working overtime 24/7 every single day of the year. It is like a fight or flight sensation that is constantly running through our bodies rushing adrenaline through our veins as though we are under attack. And our senses are under attack from either: too strong an odor that is making us sick, to a tactile sensation on our skin or other surfaces of our bodies that either is hyper-sensitive or is under sensitive to pain, food flavors, or clothing on our bodies, there is sensations of sound that when we hear certain pitches of noise it literally hurts our ears and causes sheer confusion and frustration from wanting to get away from it so badly. The visual sensations of light that hurt our eyes such as fluorescent or even natural light from the sun can cause a meltdown just because the light is so bright that it feels as though it is attacking our eyes so we always go into defensive mode and act out in some manner. Whether it be mood swings, which makes it common for misdiagnosis of Bipolar Disorder, and meltdowns, anger, rage, that is out of control. And this is why I was misdiagnosed as having Bipolar Disorder years ago, because nobody knew what to look for in an autism individual as a psychiatric patient. Those types of doctors typically do not study autism and are not able to diagnose it. One has to go to a specialist who has experience with autism.
That is until we learn the skills to assimilate into society and conform by imitating what we see or are taught to do to fit in. This is what Griffin is being taught at school however, I allow him to be himself while he is at home (within certain parameters) and out in public as long as he is cordial, uses his manners, and keeps an inside voice. My philosophy is that he didn't come into this world asking to be autistic with special needs so why should he have to conform and make himself full of anxiety all the time around other people just to suit their needs and desires? If people can't accept that he has autism then they can go jump off of a cliff with their judgment attitudes. Nobody is perfect, Nobody is "Normal" it is just a setting on the dryer......and nobody has the right to judge my son for who he is whether they realize he has autism or not.
Furthermore, my entire life I have known that I was different, that I didn't fit in and that my parents were taking me to psychologist/psychiatrists to talk for some special reason, after all my siblings weren't going. I knew that I wouldn't talk to anyone or look them in the eye because I was always being told to "speak up" and my chin was always being lifted by an adult's hand in order to try to make me look them in the eyes. But it was unnatural for me and extremely uncomfortable therefore their efforts were all in vain. I recall that my sense of smell was so strong that even the slightest "bad" odor would make me vomit, have migraine headaches and a few times I have passed out from being so dizzy. I have always been allergic to the sun even though I tried to fit in by attempting to get a tan by lying out in it and getting horrible sunburns, my blue eyes are exceptionally sensitive to the sun and to indoor lighting as well. Certain people's voices set me off especially if they are soprano, high pitched, and if they can't sing it irritates me to no end I could just scream! I am attracted to extra strong flavors in my food and if (when I had the money way back when) I had money I would be a food snob because I know what excellent food is and have the pallet for it.
These are but a few of the indications of autism through the sensory issues of the brain. The autistic mind is simply wired differently as is the entire nervous system therefore it understands the world in a whole different way. I have lived a lie my entire life trying to fit in as a good looking thin woman who attracted good looking men and always got the husband she wanted but now I am being true to myself and "coming out" as the autistic individual that I am. I have found only a small bit of support for my good news....and yes it is "good news" because I finally have answers to why I have been so unique and peculiar my whole life! I am reveling in it and seeking out support with other Aspies and Auties (Aspergerians and autistics) because I know that they will understand me. I have already found some people on YouTube who have given me insight and encouragement. The rest of the NT world will just have to learn to cope with me and Griffin being different because we are proud to be autistic!!!!!!!
Following is the definition of autism its signs & symptoms, and treatments.
Written by the Healthline Editorial Team | Medically Reviewed by Jennifer Monti, MD, MPH
Published on August 9, 2012
Signs & SymptomsSigns of these disorders usually become apparent in children by the time they are 3 years old. Autistic symptoms include a significant delay in language and cognitive development, while there is no significant language or cognitive development delay in Asperger syndrome. Because there are not significant language impairments in Asperger when compared to autism, Asperger syndrome may be referred to as "high functioning autism."
Symptoms can range from mild to severe. Some people may be considered autistic but function in society without issues, while for others, the condition can have a substantial impact on their lives and on the lives of those close to them.
DiagnosisAutism spectrum disorders are found across the world, seemingly regardless of race or cultural and economic background. ASD occurs more often in boys than in girls, with a 4:1 male:female ratio.
The U.S. Centers for Disease Control and Prevention (CDC) state that the numbers affected by autism are estimated to be around one out of every 110 children in the United States. However, various epidemiological studies have found varying rates of the condition, ranging from between one out of 80 children to one out of 240 children.
There are indications that instances of ASD are on the rise, but experts debate whether it is an actual increase or rather a case of more frequent diagnosis.
Types of Autism Spectrum DisordersAs its name infers, ASD refers to a range of symptoms.
ASDs were first defined as disorders in the 1940s by two different researchers working independently of each other. Dr. Leo Kanner studied what would come to be defined as severe or classic autism. At the same time, Dr. Hans Asperger defined the condition that now bears his name.
Classic autism usually entails substantial problems in all of the areas affected by ASDS, while someone with Asperger usually has issues with behavior and social interaction but often does not have problems with developing language. The symptoms experienced by people with Asperger are often also less severe.
There is debate as to whether Asperger Syndrome is a variation of classic autism (high-functioning autism) rather than a separate disorder.
PDD-NOS is a classification given when someone is exhibiting signs of autism but does not otherwise fit into the categories of classic autism or Asperger Syndrome.
Causes, Treatments & OutlookThe exact cause of autism and other autistic spectrum disorders is unknown. The most current science demonstrates that there is not a single cause for autism but that the disease is multi-factorial with a strong genetic component.
There is no cure for ASDs. The most effective treatments involve the use of early intensive behavioral interventions to improve the function of the child. It is generally agreed that the earlier a child is enrolled in these programs, the better their outlook.
After the tragic and untimely death of an autistic 14 year old teen drown in New York City in the East river, Senator Charles Shumer is taking action to help all autistic children get tracking devices in order to diminish the number of children wandering/eloping/bolting off out of sight from their provider or parent.Oftentimes, the autistic child who is exceptionally curious about the world around him, will wander off away from safety without a thought of getting lost and not being able to get back to his parent/care provider. Just as Griffin will wander off no matter where we are, whether it be in the grocery store, parking lot, outside our home, or in the park or public facility. And all I am left to do is to cry out to him loudly in hopes that he is within earshot and that he will call back.
- Nearly half of all autistic children in the USA: 48% attempt elopement, which is 4 times higher than their unaffected siblings.
- In 2008, Danish researchers found that amongst the autistic population the mortality rate was at least twice as high as it was than with the general population.In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.
- More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number
- Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
- 32% of parents reported a “close call” with a possible drowning
- Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
- 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
- 40% of parents had suffered sleep disruption due to fear of elopement
- Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings
- Half of families with elopers report they had never received advice or guidance about elopement from a professional
- Only 19% had received such support from a psychologist or mental health professional
- Only 14% had received guidance from their pediatrician or another physician
Here is the website for a GPS tracking bracelet especially for autistic children..