Friday, October 30, 2015

Ignorance and Judgement is Present in Every Type of School

It is common knowledge among the special needs community that as special needs parents we accept a level of ignorance and judgement from the public when it comes to our children; we even accept it from our family. While it shouldn't be so widely accepted now a days, it is and it seems to be spreading. This week I felt ignorance and judgement from a place no parent should ever feel it, one of my son's teachers. I know a lot of us have been there but that doesn't mean we should or that I am going to accept this as being normal.

Here's a little back story:

I've dealt with ignorance before. I've even written about my family's experience with the school districts we've dealt with in the past and it leading us to choose homeschool, Until now I'd never dealt with it from a homeschool teacher. I hope to never deal with this again. My family uses the K12 program which heavily pushes a General Education and Special Education curriculum for their students, as most schools do; however in our case my son's teacher doesn't require the General Ed class be attended if we can't make it. Now before you get all up in arms over this lack of inclusion-K12 is homeschool. It isn't exactly the same as a brick and mortar school.

With that said, this is what happened:


During Math class this week my son's teacher, whom has nothing to do with his case, asked us to wait ten minutes after class in the blackboard room. Of course I did as asked. When she finally came in she was full of attitude from the start. She immediately asked how Z was doing in General Education to which I replied that he wasn't going because his teacher doesn't require it seeing as though Zain is schooled with his little brother on the same level as him. I was surprised when she replied that she had only asked to see if she "had the right kid."

Now pay attention, this is where it gets good.

She followed this up by putting her nose so deep into things that are none of her business that I am surprised she didn't suffocate. She began by trying to tell me what is best for my son as far as his schooling and scheduling goes. Keep in mind this woman has never met my child or me nor has she looked at his case in depth. She is just a teacher that takes my son's homeroom teachers kids for Math. She didn't stop there though.

To sum it up, she went on to tell me that while making school and real world schedules meet up is hard it's something that must be done. I'd just have to try harder. Let me stop here and tell you that I home school two children with one computer. Between these two children I have 20 classes a day (some that are more than an hour long a piece), no less than 2 class connect classes with a teacher everyday, and 2 therapy sessions a week-all on the computer. Yet I'm suppose to find time for multiple additional classes that are 3 grade levels above where my son is all based on one woman's personal preference. Needless to say I was fuming at this point but she didn't stop there. She went on to tell me that "My choices are causing my son to be behind" [his peers in school]. At this point I was borderline homicidal.

I am extremely proud of myself for how I handled this, if you know me you will be too. I excused us from her class; told her to have a nice day; then emailed the teacher that is in charge of my son's case. His case manager was more than apologetic, which I appreciated more than she'll ever know. She also said she was going to have a talk with the teacher in question. Now let's just hope she does and this doesn't happen again. Until this point we were enjoying the K12 program.

Now this is my question, my point: When did teachers start thinking that it was OK to talk to a parent in this fashion? We know our children are behind, we set through IEP meetings, therapy appointments, and Doctors visits and listen to the percentages and levels several times a year. Did she say this stuff for fun? Did it make her feel better about herself to tell a mother that has worked her butt off over a decade that she was the cause of her child being behind? I'm assuming this teacher has no children of her own or she wouldn't have opened her mouth.

What is for sure is that she left this special needs mother confused. I felt every emotion a person can feel when she said these things. People need to think before they speak. I think it comes down to that. We are losing the ability to stop and think. When that happens people get their feelings hurt and families pay the price. While with this particular subject I desire for liberosis when it comes down to it this is one that we all must care about. The public needs to realize that this isolation we feel, this condemning judgment shown to us special needs parents extends into our schools as well.


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Friday, October 23, 2015

Assume is Such a Nasty Word

I was suffering from writers block a few months back. I was so busy and stressed out over life, yet to my dismay my normal stress reliever (writing) wasn't producing results. I'd sit down in front of the computer and nothing, and more nothing followed that... after that, you guessed it, even more nothing. I was sure my brain had broken. It has been driving me insane. My conclusion to this problem?

I decided to start writing about my life instead of trying to come up with topics that'd grab attention.

My life, after all, is pretty awesome. Most days that is. Why not share it?! 


My Family


With that said: Here you go....


Please Forgive Me, I Woke Up Today Inside of Someone Else


When a bad day becomes a gift:
 

I wake up exceptionally early each day in order to get things done before my demon spawns fly out of their rooms and wreak havoc. Waking up that early isn’t fun but it is literally the only quite time I get a lot of days. Most days this desire seems to fall upon my children's "deaf ears" though. This morning was no exception.

I awoke at 5:45am and preceded to listen to music while I picked up the house and looked over their home school plan for the day. Looking over the plan and getting it ready is imperative to the day going smoothly. In case you don't already know, Zain has autism and can be a handful at times. He requires sameness each and every day. This routine is important to him being able to function. None of this diminishes how amazing he is though. In addition to Zain’s autism, Dryden has ADHD and as a result is beyond hyper and inattentive. At times it is way too much to take. I honestly think it is a whole lot for him to deal with too. His poor brain never stops. It is so extreme that he hurt his neck months back due to his hyperactivity.

Courtesy of: www.DefyingTheSpectrum.com


Courtesy of: RiverviewHealth.org


But I digress…
Fifteen minutes after I got out of bed Zain sensed my presence missing from my room and came stomping into the living room. With utter selfishness I thought, "There goes my hour of alone time. No quite time today. Another day without it. I do believe this is a record by now." Of course I didn’t say any of this. Not saying the selfish things that we think is part of being a good parent. So, undoubtedly this isn't what I said. Instead I carried on with the mommy thing and said good morning, hugged him, and made breakfast.

Let me just take a moment to ask you this: Are there any other mothers or fathers out there that plead for that hour of quite time, even if part of it is spent cleaning? If you said you don't and you love having you children around you 24/7 I am here to tell you that you're a damn liar. We all entreat for that time. We love our children but it’s how we keep ourselves sane. You know that invisible "line" that tells you that you are a parent and a productive member of society, you know, the one that also reminds you that you aren't a rock star that has no responsibilities? You know that "line," it’s called reality. Yeah, that hour of quite keeps that line from blurring. So you see, knowing this makes it understandable that I was somewhat irritated by the whole day at this point.

Shortly after Zain woke up Dryden did too. He came out of his room rubbing his eyes, in nothing but underwear (which were in no way what he went to bed in.) He immediately asked if it was really a school day or if he dreamed it. To this Zain replied by saying, "Yes there is school Dryden, we have to do school every day. No stop." This came out in an extremely smart-ass tone. To which Dryden snapped back, "Nuh uh Zain, we get breaks." Now it is on. Zain's authority and his word have been questioned. Blood must be shed. (While I am kidding, in a way I am not.) It’s the one-sided thinking that Zain lives with as a result of his autism that caused this fight. He wasn’t giving up and the exchange lasted for about 5 minutes. What am I doing during this you may ask? I was laughing inside, yes, ok... I admit it. This has become such a common occurrence in our home we have to find the humor. I definitely found the humor in this, right away. I might as well have popped popcorn. It is hilarious the things a 9 and 12-year-old will come up with. I do believe I was compared to a disgraceful slave driver, a callous Police Officer, and the President of the United States.

Instead of getting mad in that moment I surprisingly realized that this is a boon, definitely a desirable state of mind to find yourself. A certain way that I can tell I’m a good mother. You see, nowhere in there did my children accuse me of being their friend. Obviously I'm doing something right. Amazing insight for me in my life. My point? Don't always assume something is going to ruin your day; those moments of stress can in turn be a piece of good fortune. I'm just now learning that. Sometimes assuming can cause you to wreck your day. What I assumed was going to end up being a stressful day ended up being made before 7 am. I doubt I’ll be lucky enough to have such a learning situation thrown at me again for a while but I'll take this smile and wear it for as long as I can.


Then again it seems maybe I haven't learned my lesson about assuming after all.



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Thursday, September 10, 2015

Our Home School Family

As we sit down and let our evening wind down I find myself reflecting on our home school experience. The last few months have flown by. One moment I was anticipating the beginning of the school year, now here it is. Where did the summer go? It seems like it gets shorter every year. With the beginning of this new year I find myself reminiscing about our summer break. I bet you find yourself looking back on your family's summer as well. If you're anything like us you had a crazy summer! Ours consisted of both of our children having minor surgery, lots little league games, tons of biking and skateboarding, hikes, visits to Volcanoes, climbing on the Fremont Troll, and having several family members come out to visit us from the east coast. It was definitely fun for the most part BUT it's that time of year when we have to pack those experiences away in our memories and shift focus and priorities.

First Day Picture


School in Our Home

 In most families the start of school consists of buying new clothes and making sure everything is ready for your child's return to their brick and mortar school. In my home things are very similar but also quiet different to the normal school routine. You may be asking why?! You see, I teach my children at home using the K12 program. Some of you may have heard of it, some not. This program has been wonderful for our family. In this method the student uses a lesson plan that the chosen k12 school provides. The student must have a "learning coach" in order to help them and instruct them during their lessons. In our case I am the primary learning coach. K12 solved a lot of problems we had with our home school district but with all of it's allure you mustn't forget that it's also a huge commitment. Research and more research is needed before deciding on any alternative education method for your child, this program being no different.

While K12 is a free online public school it isn't all together hassle free. Your research will show you that. The school doesn't provide all the supplies- including but not limited too: paper, crayons, pencils, poster board, in some cases a computer, your internet connection, random crafts material, calculators, etc. (Of course this list changes based on your child's grade.) Our children are still in elementary school. You also need to be extremely prepared for what exactly it means to be a learning coach. Looking at the schedule everyday is daunting but do not over work yourself and focus more on percentages then daily work. Also, make sure to take into account the time needed to complete the required class connect and therapy sessions (if your child needs therapy) each day.

A little about my K12er's

My oldest son, Zain, is autistic. When at his local school he required a one-on-one paraprofessional with him all day long; with K12 and our school he is able to succeed with his teachers and myself aiding him only. We joined K12 as a last resort to end the bullying Zain was experiencing- as well as remedy his paraprofessional's inability to show up to work. This is his 2nd year with K12, meaning we are still technically "newbies". We love their program though. Zain's just about 12 years old and currently working on 3rd grade level work. He is technically a 5th grade student; however he would be in 6th grade had he not been held back.

Zain and Myself



My youngest son, Dryden, is typically developing and just started his first year with K12. Dryden didn't require any extra help while in his local public school; the choice to attend K12 was made by Dryden on his own. He is 9 and in 3rd grade. Dryden is working at his expected level for his age. However he does have a touch of ADHD. By a touch I mean it oozes out of his pours most days. It's just part of his overall charm, got to love him.

Dryden and our dog Dug

Getting Ready for the School Year 

Of course having access to a computer and the internet are two of the highest priorities for this fashion of schooling. Since those two elements are not necessarily an issue for my family I really don't have any worries concerning them. Just be aware that these two required elements are not provided by the program (in some cases a computer may be, that depends on the school you go through and the state you live in) Another important point when homeschooling with any program is providing the right environment for your children to learn in. I try to remember that a messy home leads to a messy mind. Part of this environment includes having a functional set-up in order to teach effectively.

In our family's given situation having an area that has a separated teacher and student area works best. One that is somewhat like a regular classroom. Given that our oldest son is diagnosed with autism having a situation that is as close to a classroom as I can provide is important. In our home there is an area for me to work out problems with them on a board and there are areas for both of them to work independently. Both of my boys and myself also decorated the areas in a way that reflected an area they would enjoy learning in. This main learning area is simple, has visual aids for my oldest son, and is comfortable for them both.

Our learning area

Their preparation shelves

What they see as they are learning

They can clearly see their schedules


Our First Day of This Year

Now that the first week of school is here don't worry if you use K12 and are confused. The first few weeks of school are always confusing. If you aren't left wanting to pull your hair out I have found it is a good implication that you are doing something wrong. At least in these introductory weeks. I have to keep reminding myself that we have to pace ourselves and learn at our speed, especially with a special needs student. I must say that last year with one student was a faster process for me, I am finding so far this year that having two students is vastly different but doubly as rewarding. It does takes longer to complete the daily work because they both need my help; however it is nice to watch my children help keep each other on task while I am teaching. Who knows maybe this school year will end up bonding our family even more closely than we already are. What I do know for sure is that once class connects start and we fall into a routine things will go much more smoothly for us. That applies to both my children and myself.

As our first day ticked on we found ourselves finishing lesson after lesson, class after class. While we did experience our own hick-ups we are able to say we persevered and finished up our work without overworking ourselves. Now to move onto day two. Here's to hoping for another successful day for all of us learning coaches and our students.

Working on our school work on day 1

Self Portraits



Sites of Interest: 

Tuesday, March 24, 2015

Hyperbaric Oxygen Treatments to Treat Autism?


Hyperbaric Oxygen Treatment is one of those treatments that is used for more conditions than just autism. It’s also one of those treatments that any parent would question when they first heard about, leading to a need to research it and the claims. An article I wrote earlier this month covering MMS treatments for autism led to comments about hyperbaric oxygen treatments from a parent in an autism support group I co-run. I had to research these claims. To my own surprise, my research has now lead me to a place of interest- I want to know more.

Hyperbaric Oxygen Treatments
Whenever a “normal” person has to focus on a completing a task there’s an upsurge in blood flow to the brain. The increase in the blood flow that’s seen supplies their brain with more oxygen and glucose which, in turn, gives their cells the energy that’s needed to accomplish their task. In children with autism, however, several studies have shown the contrary. Shockingly in a lot of cases they actually present with diminished blood flow. When autistic children’s brains are attempting to accomplish a task their blood flow doesn’t increase which deprives them of the oxygen and glucose needed for their cells. This lack of blood flow and glucose is a result of cerebral hypoxia resulting from hypoperfusion.


The difference in cerebral blood flow after HBOT... Photo Courtesy of autism-nutrition.com


According to a study releases in ScienceDigest by a Mr. Daniel A. Rossignol, "Numerous studies of autistic individuals have revealed evidence of cerebral hypoperfusion, neuroinflammation and gastrointestinal inflammation, immune dysregulation, oxidative stress, relative mitochondrial dysfunction, neurotransmitter abnormalities, impaired detoxification of toxins, dysbiosis, and impaired production of porphyrins. Many of these findings have been correlated with core autistic symptoms. For example, cerebral hypoperfusion in autistic children has been correlated with repetitive, self-stimulatory and stereotypical behaviors, and impairments in communication, sensory perception, and social interaction.” This is where Hyperbaric Oxygen Treatment (HBOT) comes in. While HBOT has only been used to treat autism for around 2 years it isn’t used just for autism.
Over the years doctors have started using HBOT for things such as: 
  • Carbon Monoxide Poisoning
  • Gangrene
  • Osteomyelitis
  • Cerebral Palsy
  • Fetal Alcohol Syndrome
  • Closed Head Injury
  • Stroke
  • Severe Burns
  • Severe Anemia
  • Injury from Crushing
  • Brain Abscesses
  • Skin Grafts and Flaps
  • Delayed Radiation Injury
  • Flesh-Eating Disease
  • Skin Infections that are causing Tissue to Die
  • Thermal Burns
  • Central Retinal Artery Occlusion
During the treatment the individual with autism lies down on a table in an “enclosed chamber” and breathes in 100% oxygen, subsequently the pressure in the “chamber” is slowly changed. The typical protocol for autism is to breathe the pure oxygen for about one hour. Pressure inside of the chamber is set at 1.3 to 1.5 ATA. These numbers compare to a depth of ten to seventeen feet of seawater.
When done in a hospital setting, properly, HBOT is considered to be safe; nonetheless many critics still advocate against using it for treatment of autism. However fires associated with HBOT have been known to have caused 80 deaths worldwide over the years, including a grandmother and her grandson who died whenever the chamber exploded in Florida in 2009.

An example of a HBOT chamber../Photo Courtesy of www.cacitches.com


The Parental Claims
The claims that parents make concerning their children being in HBOT are rather amazing, to say the least. Of course more studies need to be done to correlate the claims of these parents. It must be said that the studies currently available are quite remarkable though. There are claims of almost completely cured children to children that had unbelievable results within 20 hours of receiving their first treatments. Though I personally doubt the validity of these claims to their fullest the thought of them being accurate certainly induces hope.
Some of the Claims for using HBOT:
  • Improved Sleep
  • Calmer and More Affectionate Children
  • Improved Focus and Attention
  • Improved Bowel Function
  • Being More “Present”
  • Less Sensory Disturbance
  • Improved Cognition
  • Increased Speech
  • Improvements in Language
  • Improvements in Eye Contact
  • Improvements in Socialization
  • Increased Appetite
  • Improved Digestion

HOBT Side Effects and Precautions
As with almost any other therapy there are side effects associated with Hyperbaric Oxygen Treatments. These treatments mostly include things such as fatigue, ear pain, and/or lightheadedness after treatments. There are other, less common, side effects associated with HBOT.
Less Common Side Effects:
  • Damage to the Lungs
  • Rupturing of the Middle Ear
  • Damage to the Sinuses
  • Changes in Vision causing Myopia
  • Lung Failure
  • Fluid in the Lungs
  • Seizures
It’s important to also note that it’s recommended that you avoid having HBOT if you have a pacemaker, are pregnant, have certain lung diseases, take chemotherapy, or have a collapsed lung, have heart failure, a cold or fever, are claustrophobic, and if you take the drugs disulfiram or sulfamylon.

Conclusion
As a parent of a child with autism standing on the outside of this treatment looking in it seems quite risky. Quite risky but also quite interesting. If the claims of the parents are proven to be true over the next several years than I would be interested in possibly looking into the treatment for my son. Not at this time though. I don’t believe that-at this time-the proven positive results outweigh the possible negative consequences associated with this treatment. This is simply my opinion though. Over the next several years I do believe that scientist may be able to make more sound correlations between what can be proven by medical science and the claims of the parents who use this treatment on their own autistic children.

Sources:
ScienceDirect: Hyperbaric oxygen therapy might improve certain pathophysiological findings in autism
ScienceDirect: Hyperbaric oxygen therapy may improve symptoms in autistic children

Wednesday, February 11, 2015

The Gentleman with the Unheard of Strength


I want to tell you a story about a gentleman with unheard of strength. This fellow has spent several years of his life in a great deal of pain. Pain that no person should have to live with or work through. He has lived with this pain with a level of dignity and reserve that makes it where he deserves to have his story told. This guy puts his family first, way ahead of himself. This gentleman has given bone, sweat, and blood for his family. The least we should give him is respect and acknowledgement. Now, let’s go back about 3 years ago…

The Accident

 It's the fall of 2012. Said gentleman and his youngest son were at the skate park having some quality time together. At some time during the day this gentleman folded his right knee up and felt his outside ankle hit his hip. Could you imagine the instant pain? The screams his wife heard on the other end of the phone bordered homicidal. She had no idea what had happened and neither did he. What he did know was that his son was there with him. He didn't want to scare him. Given that fact the lad composed himself quickly and with no thought for himself. Instead of carrying on he cut off his tears and "made a game” of getting to a safe place until his wife got there. Upon arrival his wife could see the pain radiating from his eyes the moment she walked up. There was no mention of the pain from the strong fellow though. Not one complaint passed his lips, not one tear flowed from his eyes while his son could see. Instead he backed up his child as he told his mother how proud he was of himself for helping his daddy get to the car. Talk about one amazing man.

The Aftermath

 Ok, so... let’s fast forward a few days from the accident, to the orthopedic doctor's office. The guy and his wife sat there in shock and disbelief as his doctor tells them that the guy had in fact torn his ACL, as well as having torn his medial meniscus and lateral meniscus. They were completely taken aback in that moment. Of course they knew of these types of injuries and how devastating they can be, both on the patient and their pocketbook. Ultimately the doctor felt the best thing to do was put a brace on him and do physical therapy. They agreed...
Unfortunately a few months later the gentleman and his family moved across the country and had to wait for him to receive proper treatment. He rarely complained about it as the time went on, his wife never saw him cry in pain. Instead he hiked with his family. That’s an understatement honestly. He didn’t just hike; the man climbed 4 major mountains in Phoenix, AZ, walked all over southern Indiana, and went on adventures to Mt. Rainer and Mt. St. Helen’s with his family. They had 4 mile long family walks twice a week, every week, each spring and summer. He also moved his family in and out of 3 houses in 3 years, with only his wife’s help with two of them- this due to the job changes. Still no complaints from him, that is until one day 2 months ago when the gentleman called his wife from work in pain again.

The Surgery


Lack of ACL 


Knee incision after surgery
Knee incision after surgery
One week after the phone call from work they went to a new orthopedic doctor to see about getting surgery for the gentleman. When the doctor was able to get him into surgery the doctor found out that the gentleman’s injuries had worsened. His ACL had completely snapped  a while back and it had been so long since that there was no sign of it anymore, his meniscal tears were worse as well. They went in and cut out a piece of his hamstring. From that they created a new ACL and attached it. They then cleaned up the other tears and closed him up. The most interesting part was that the gentleman had worked so hard on his injured knee that he wore the knee bone away from it rubbing against the other bone (impound fracture). 




This is an inside view of his knee bone
His doctor told his wife that the impound fracture to his knee was the most impressive he had ever seen. How many people do you know that could tolerate that, without help, for that long? I didn’t think I knew any until now. This gentleman is simply remarkable. The surgery was hard on him, but if you don’t know him you’d never know it. He was operated on the afternoon of Thursday January 15th- he returned to work that following Monday. 4 days later! He has worked every day since, on crutches and on cane. Still few complaints to be heard from this extraordinary gentleman. Now all he talks about is how mad he is that the injury happened to begin with. It happen doing a trick he’s done a million times, he says. You have to admire his spirit.


After surgery
 This gentleman is about half way through his ACL reconstruction recovery now. His process has been grueling. He has had to relearn how to walk on his leg. He is being retaught how to walk up and down stairs, hop, and run as well. He has been told he will NEVER skateboard again, given his strength his wife doesn't believe that. On a lighter note: the gentleman reports that his physical therapist says that he is about 2 weeks ahead of where he should be. That doesn’t surprise me though. Said gentleman is determined to be recovered before summer. He wants to play with his children.

The gentleman I am talking about happens to be one of my heroes and one of my biggest supporters. I married him 13 years ago. It was the best decision I ever made. Chaz has always taken care of his family above all else. He has an almost unheard of work ethic and a devotion to the 4 of us that I have never seen. I am luckier than I could ever know to not only be married to one of the strongest men on earth but to be married to my best friend and one of my heroes as well.


Week 3 of recovery