"One of the biggest misunderstandings you have about us is your belief that our feelings aren’t as subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with autism aren’t skillful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or a meltdown."
-by Naoki Higashida, a 13 year old boy with autism using an alphabet grid to construct the words because he is unable to speak. (from The Reason I Jump-book)
I follow an Autism Page on FB that i really like and find helpful.
Its called Autism Discussion Page.
It helps me to understand where my Liam is coming from, and therefore i am able to help,understand, handle and connect with him better.
Anyways. I am going to begin sharing the posts which i like on this page so that all those in his life can benefit from the knowledge and maybe be able to help you get a little closer to understanding his world too :) Here is one of the posts that was shared recently that i really enjoyed reading.
Challenges at School
We start the series from the view point of the child
“Stop the world I WANT OFF!!”
Afternoon at school for a child with processing difficulties
“The world is spinning and bombarding too fast! I try, and try, until I cannot process any more. Help! My brain is drained, and my energy depleted. It is only noon and I have to somehow make it through the afternoon. Recess ischaotic; let me hide to the side. I have to somehow regroup and conserve, since I have little reserve. Like every afternoon I will have to”shutdown” to “shut out” the world. As I overload, my senses become heightened, hyper-sensitive, and impossible to tolerate. The sounds, the smells, the chaotic activity around me meshes into confusion. I have to hold it together, and stay calm, as to explode would to bring disaster. I will sit quietly, but stare off. To be aware will overwhelm.”
“Like most every afternoon I will not remember what happened. It will be a blur. I will withdraw to survive, and gasp for air to not suffocate! I hurt all over, but cannot cry! I feel panic as the bright lights blind my eyes, the voices overwhelm me, and the smells make me nauseous. I can barely feel my arms and legs, let alone use them effectively. I am falling apart as I hold it in. I will withdraw and hide, sit quietly in my chair and hope that everyone forgets I am there. I want to hide in a corner, wrap up in a blanket, and withdraw to survive. I pray there will be no snags, or added demands, and hope that the teacher does not call on me. .I cannot distinguish between what is said, what I did, or what is happening around me. Please somebody! Stop the world and let me get off!”
Always be aware that a full day at school can be very draining and overwhelming. The sensory bombardment, social strain, and academic demands can tax an already vulnerable nervous system. Our world presents too much, too fast, and too intense for many on the spectrum. Many have delayed processing issues that make processing slow and taxing. They have to consciously “think through” much of what we process subconsciously and smoothly, with minimal energy. Slow it down, break it down, and give them a lot of breaks to rebound. Their energy supply drains fast, and they must have time to withdraw to regroup. Many have sleep disturbances, dietary concerns, and anxiety issues that leave them with a low reserve starting out the day. If they had an exhausting time the previous day, chances are they still have not replenished to full reserve. Do not pressure, do not demand, and let them pace themselves. Develop a sensory diet with plenty of breaks, and most importantly allow them to escape when needed. Give them a voice, and make sure they know how, and feel safe, to say “no” and “I need help.” As a teacher or aid, help them feel safe in your presence, and trust that you understand. As the day wears on, be aware that stress chemicals accumulate and the child will be drained. Do not pressure or ridicule, but support and reassure. In the mist of chaos, they need to feel “safe and accepted”, and know that they can count on you to support them.
This series on school issues can be found in the green book, "Autism Discussion Page on Anxiety, Behavior, School and parenting strategies"
Back in April, we took Sam to Early Steps for an evaluation on his overall development, and to see if we might qualify for any services.
Let me backtrack a little bit.
While we were still in Georgia, he had begun speech therapy once a week. At the time he had no words and we had some concerns regarding behaviors. He had turned 2 that past November 2013.
To go back a little further and so you can feel where i am coming from...
We began our autism journey with Liam, right before i became pregnant with the twins.
By the time the babies were born, we had not yet sought out or received an official diagnosis. However, I had made my way past denial and i researched.
I was still green to all the new info i was uncovering and learning, and so while i was unsure of how to handle vaccines for the twins at the time , the more and more i learned the less confident i was in the vaccine process as it stands.
They got their vaccs at the hospital. They got them until they were 4 months old.
Then i decided that for us, the risk of damaging my children did not outweigh the so called benefit of these toxic vaccines, as it were.
I recall how Liam reacted after his MMR. I am not saying vaccines caused his autism but i stand by the fact that the MMR pushed him over the edge, making his symptoms much much worse. His little body simply could not handle the toxic overload.
Like I said, he had already been displaying some autistic "symptoms" but they were mild. He slept well, he was so happy, seemingly never through a tantrum, sweet, peaceful kid. The autism was already present let me be clear. Little eye contact, repetitive play, spinning toys instead of playing appropriately with them, not always responding to his name, little sensory issues, etc...
But nothing like how he was after the MMR. Within a week, he was a different kid. Stopped napping, stopped falling asleep on his own, stopped sleeping through the night. Began stimming A LOT (shaking his head back and forth, rocking, hand wringing and flapping, etc). He began self injuring (head banging was the biggest one thank god he doesn't do that anymore) he was alllllll over place, more than ever. He cried a lot, he was not that happy, chilled out little boy that once was. He began getting horrible eczema, he had already had little breakouts but it became so so much worse.
It took me a while to pin point exactly what happened , and it actually was quite a while before i realized what really happened. It was only after i was swimming in all the info from the research i was doing that i put it all together.
It was a total- SON OF A BITCH- moment.
I had questioned doing the MMR for him, but at he time i was not yet very informed and didnt know how to say NO.
It is one of my biggest regrets as a mother to this day.
The eczema went away a few weeks after we began the diet and has never returned. Behaviors and other challenges still exist, as is the nature of autism, but have improved greatly and continue to do so.
Diet, bio med and therapy combined has been our method.
We have language now which began at around the same time Sam started talking, i give it up to a change in probiotic, and age.
(Custom D, Lactate Free, its a beautiful thing, check it out)
Anyways,I am telling all this simply to explain that, the risk is higher for the younger sibling of a child with autism to develop autism.
Knowing this, and after uncovering info after info supporting my doubts on continuing to vax the twins, it SIMPLY WAS NOT WORTH THE RISK.
For me. For us.
What if their little bodies couldnt handle it either? How could i take the chance?
So, of course they twins have been under a bit of a microscope since blessing us on this earth.
I was all about making sure they were meeting their developmental milestones.
Are they making eye contact? Are they responding to their names? Are they eating normally? Are they reacting to any foods? Are they playing "appropriately", Are they showing any signs of repetitive play? Are they showing any signs of stimming?
And on and on and on....
And on.
In the beginning Daisy was the quiet one. She was more of an of an observer. Sometimes she wouldn't look at me when i called her name.
It freaked me out.
That passed.
Sam always had trouble sleeping, but as an infant he babbled a lot, made great eye contact, interacted, ate well.
I kept telling myself- We just need to make it to 6 months , and have met all the milestones.
Then, ok lets make it to 12 months.
I felt like i would not be able to relax, would not be able to BREATHE until we got past the age of two and they were both talking.
Just keep swimming Alex, keep that head above water. you can do this, everything is going to be alright.
Then, around 15 months....the 3 of them came down with a VICIOUS virus. High fevers. Miserable.
You got this Alex. Lets try to get through this with no antibiotics, we got this.
Around the 3rd day of fevers. I began to notice Sam was beginning to act a bit strangely. He was doing this back arching thing when he was throwing a fit and this back arching thing when upset actually continued until about 3 months ago (i will tell you why shortly).
Another thing he began doing during those few days was banging his head on the ground when he was upset.
I was horrified. I just couldn't accept this. .
You say so what? Lots of kids throw crazy fits and fling themselves around.
Yes but not quite like this. This was different.
I have a tendency to follow my mommy instinct now a days and something was telling me that this was a little off.
Along with this, we began to notice that he was not really responding to his name like he used to. He had been keeping up with Daisy in the gaining words department but this suddenly stopped and he went back to more babbling and stopped trying to repeat things like before he got sick. His night wakings increased to 4 or 5 times a night and he would wake up with a vengeance, like a night terror. He would be having a complete FIT, writhing, arching, thrashing his head around. It was like he wasn't even present.
It was horrible. We tried to ignore it, pretend that it was nothing.
But, I couldnt.
I was filled with anxiety and fear.
Not again God, NOT AGAIN.
I dont know if i have it in me, I dont think I am strong enough.
I was depressed, scared, angry, confused, sad, a mess.
A mess.
2011-2013 were hard HARD years for me.
Really hard.
I look back now and sometimes it makes me sad, just how deep i was in it.
I feel like i didnt appreciate a lot, simply because i was so CONSUMED.
Swim. Keep swimming, kick those feet. Hard. keep that head above water. You have to. They need you.
I immediately started Sam, and Daisy too, on the GFCFSF diet.
How are we going to do this i thought to myself? 3 kids on a special diet?
There was no other way and i knew it.
We had seen the benefits with Liam.
So, with Jason 100% on board (God bless him, i sure do love that man), we moved forward.
I began giving them some of the same supplements I gave to Liam.
Slowly we began seeing some improvements.
But he still had no words, and while Daisy's vocabulary began emerging, I couldn't help but continue to have this fear, deep in me... gnawing at me, all the time.
I couldn't even say the words though.
I continued trying different things.
We got him set up with Babies can wait in Ga, and he began getting some speech therapy. But there were still so many sleepless nights, and little behaviors that left me unsettled. I had to occasionally check myself to make sure it wasnt all just me being nutty...lack of sleep, high stress and anxiety can make you think crazy shit. It wasnt just paranoia though, there was definitely something up.
It wasn't until after the move that while we were in Orlando still, i decided to try the very potent probiotic on Sam that i had begun giving to Liam right before the move. I dont know why i didnt do this before. Initially there was some die off (regarding die off of bad yeast in the gut and bad bacteria which directly impacts behavior and well, your brain ...when die off occurs you can see an onset of increased bad behaviors to follow with breakthrough and good stuff :) ) but after a week that cleared. Check out Custom D Lactate Free. Good stuff.
That along with Kavinace at night, in his dinner time juice, has balanced him out.
We began hearing words! He began imitating us again.
I took away a few supplements (magnesium glycinate was giving him HORRIBLE gas and poops) , starting a few others. ^
Always trying to figure out the puzzle.
Every kid is different.
Something that may have works wonders for Liam might not have the same effect with Sam, etc.
We left Orlando with Sam having a small vocab and making many other breakthroughs.
He got a chance to hone in on his social skills while in Orlando too and that was great..
Most recently, after a few days of Sam having a few horrible tantrums
(he would hit himself in the face so hard that he made his lip bleed a few times. Scary.)
I went on my cherished FB group for parents that are following Bio Medical Interventions, and came across a few threads with parents discussing similar situations with their kids. Horrible tantrums, self injurious behaviors and what they were doing to curtail these.
I dont know how i would have survived the past few years without their support and knowledge.
And how strange that i would just happen upon these particular threads discussing these particular topics right when i was going through the same thing at the same time.
You see? That was God putting Angels in my path to guide us.
I know this. i have faith and i pray, A LOT.
We have come through so much and come so far because of it.
Anyways, my point is i discovered that these behaviors are often the result of a food sensitivity, it is a direct reaction to it.
I began noticing a pattern that included strawberries, popcorn and peanut butter. I know i should have eliminated one at a time to see which one it definitely was but at the time my nerves were shot, and i was tired.
So bye bye strawberries, peanut butter and now we only do popcorn occasionally vs like, every other day like before.
And guess what? He hasnt had a crazy tantrum since.
Sure he still throws fits, but they are your usual, run of the mill 2 and a half year old kid fits. so there you go. No more hitting himself , no more middle of the night raging night terrors or whatever the hell those things were.
Oh and those back arching fits he would have? Gone after starting the probiotic. Turns out that gastrointestinal issues and distress cause these behaviors too.
Over the past 4 months we have made really fast and wonderful progress.
If you would have asked me back in December if I thought Sam was also on the Spectrum, I probably would have told you that yes i believed that he was mildly on the spectrum.
Now? Not a chance. And i am not the only one noticing the improvements, even within the 3 weeks that hes been seeing his new speech therapist Nirvana, she has noted that she sees NO abnormal behaviors from him. Simply that he has a little catching up to do in the verbal department, but not by much anymore!
He is well on his way.
On the real?
Do we still see some occasional "behaviors'? Yes, sometimes. He still wakes up occasionally in the middle of the night, i notice when he does, he will burp or toot when i pick him up so this tells me we still have some gastrointestinal issues to work through.
To summarize, I think that what we experienced with Sam at around 15 months was the the beginning of a regression in to autism, or at the least pdd-nos. I think that if he had been fully vaxed we would have see this regression sooner and harder and we would still be trying to recover him, just like we are still trying to recover Liam. I think that because i chose not to vax for a while (if ever now) it made it possible for me to catch the regression and reverse it, if you will- with diet, bio med and therapy.
I think if they were re-evaluate him now he may not qualify for services, and that makes me feel good. But, we will take the speech therapy for now, it can only help. Nirvana, his therapist is really great. Her name is awesome too :)
Sam is thriving, and is meeting all his milestones. We have some gastrointestinal things to get under control still but we'll get it sorted out. I do notice some sensory issues with food/texture as well as with some sounds, but these have been mild and manageable.
I am not writing this to change your mind about vaccines.
I feel like that is an extremely personal choice and not one I have taken lightly.
I am simply sharing a small piece of our family journey. A bit of our story.
At Early Steps.
The waiting room was so much fun!
Contemplating things.
Wook Mommy!
Lately one of my very favorite things to hear
-next to Liam singing Justin Bieber Baby Baby song with me on our way to school every morning /dont judge/, and Daisy saying Oh My Goodness when she gets excited about things /yeah i got her to change ohmygod to ohmygoodness ...whew! lol/ -
is Sammy every morning lately when i walk in to their room...saying Mommy!
Clear as day.
Mommy! Hi! Mommy!
And then he runs over to give me lots of kisses and love.
He even makes the "muah" sound on purpose when giving the kisses.
A little bit of excitement, a little bit of first day jitters.
Today was Liams first day back to school. He has been out since December! :/
It took a long time to get the ball rolling (waiting on transition meeting took the longest -over a month, then gathering needed documents to enroll him).However, I am feeling really good about it all. The IEP, the school, his teachers, all of it. There's only a few weeks left in this school year but he also qualified for an extended school year which means he will go for a few weeks in July. I am really looking forward to seeing what the following school year will bring.
We've been talking to him a lot about it for the past week, especially last night and this morning when he got up.
*Side note-When it comes to autism, ALWAYS presume competence.
Even if he looks like hes not paying attention or listening or understanding, he IS and he absolutely DOES.
He went to bed early and woke up extra early and was a bit aggravated all morning, so i took that as first day jitters.
Drop off was fairly easy, and i will be walking him to his classroom every morning, at least until the next school year upon which he will most likely take the bus.
When i picked him up, he started crying as soon as he saw me. His teacher smiled and said not to worry, he had a good day. She said he was playful and friendly and did well for his first day.
I fully expected him to meltdown either on the car ride home, or once we arrived to the house but neither happened.
I didnt pester him with too many questions and just told him i was proud of him and that he did a really great job today and that i love him.
He held my hand the entire way to the car which is a big deal for us since normally he is trying to dart off in every direction. I opened all the windows for the drive and turned off the music and we enjoyed the wind in our hair for a few minutes (the school is less than 2 miles away). When i would hear him getting fussy i would just reach back and rub his little knee and leg and tell him i love him and that he did a great job.
He had a smile on his face walking up to our door and was greeted by daddy yelling LIAMs HOME! Hiiii Liam! WE MISSED YOU!1 HOW WAS YOUR FIRST DAY AT SCHOOL!?!? He plopped himself on the couch , feet up in the air requesting help to get his shoes off. Off went the shoes, off went the shirt. lol
Hes been fine since, pretty chill, extra lovey and cooperative which is the complete opposite than i expected. .
I had music playing just now while cooking dinner and when Could You Be Loved came on and he reached up for me to pick him up and dance around the kitchen with him. He nuzzled his little face in to my shoulder and we danced until the song ended then he jumped down and went on his way. I will never turn down a dance or a cuddle from my babes even if i burned the first batch of french toast by not paying attention. lol One day I they will be too big for me to hold and spin around the kitchen dancing. i know that and am soaking it all in while i still can. :)
He seems a bit more tired than usual but that is to be expected! Lets hope tomorrow goes as smoothly or better.
As usual the boy never ceases to amaze me, and i love him for it.
It went wonderfully, they gave me everything i asked for (for Liam) and then some! In fact, most of the stuff i had planned to request was presented to me as a recommendation before i even had to ask for it. This is in total contrast to our last experience where i felt like i had to fight for everything only to receive half. His team is fantastic and i cant wait to see what the coming school year will bring. He is going to go for the remainder of the year, which will be a good adjustment period. He also qualified for an extended school year which is GREAT. I am beyond pleased. One of the ladies praised me for all of the information i presented, and for being thorough, informed and involved. They all began chiming in with thank yous and more praises and i swear i almost cried. it felt really good to know that all the effort was recognized and that it does serve a purpose. You know, I went in ready for a battle. This way of "being" is not in my nature. But when it comes to my kids i dont play. I will do whatever i have to to ensure their success. More than their happiness because if they are successful in their life (gauge that however you like) then happiness will follow along with it. Anyways i am rambling. I am tired. lol Ready to relax this weekend! Happy Friday everyone.
Everyone pray for me that I can make the right things fall in place for our Liam Oliver, and that this new team of people are kind, smart, motivated, focused, caring and nurturing. Dear God. Amen.
I spent 5 hours today at the Parent to Parent of Miami IDEA and IEP Workshop, arming myself with knowledge and confidence. This was a great start and I will definitely be going back for more. The ladies at P2P are inspiring. This process takes fine tuning. Liam's transition meeting is next week. I know he is "only" in early intervention Pre-K, but i feel the need to be really well informed and involved. I am his voice, after all. His first IEP in Ga left a lot to be desired and I would have definitely done some things differently looking back. Knowledge is power and I know its never too early to get a good solid start. My goal is to become well versed in this process, i want it to become a fluent language. I want the information to flow from my mind and roll off my tongue. My words powerful with intelligence and my conviction strong.
Shoot by the time its all said and done, when the twins start school its going to be a piece of cake! At least thats my hope.
Now its time for a beer. Or two. Because my brain just might pop. hahaha
I swear they should offer like, a happy hour after these things, or a one hour massage or both . Just to decompress. Its a ton of information to absorb not to mention the emotional involvement on top of trying to pack your brain full of info.
