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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Would the Real Autism Specialist Please Stand UP? Insurance Companies Denying what Doctors Prescribe

Would the Real Autism Specialist Please Stand UP?

Insurance Companies Denying what Doctors Prescribe

In the last 10 years I have dealt with a number of injustices following my son's medical care but the fight I am starting into now is proving to be the worst...

I haven't posted in a while because my son woke up a few months ago and I found he'd been possessed (not literally). He's regressed and is exhibiting the behavior that he did in his younger years, the behaviors that I had worked so hard to help him overcome. At this stage if I don't write about it I may explode. SO...

 His regression is presenting in ways such as including but not limited to these:

• His temper tantrums are epic and his meltdowns are even worse. 
• He destroys rooms and is physically violent with me at times.
• He is biting himself and eating socks (literally).
• He is acting like a 3 year old at all times. 
• His stimming has changed.
• His sleeping patterns have changed, they are so much worse (which is hard to do)
• If his eating gets any more picky I'm in trouble again. I hated the picky eating issues... ALL sensory with him. 
• Going a long with that, his sensory processing disorder is presenting off the charts some days.
• He has developed a few TICs. 

My Son and Me

Where I live and love: 

 Where I live there are no behavioral therapist to be found, not any that will treat my child anyway. There are no specialists that see autistic children over the age of 8. I moved to this corner of the U.S. with the false belief  that things are better for families like mine. Upon arriving here, over a year ago, I immediately realized this wasn't what I thought I'd signed up for, me or my husband. Things aren't great unless your kid is under 8, I sang this constantly in my head. It took me months of pleading to find a doctor that would treat my son. The doctor I finally found had to look up autism before she saw us, I called the shots, changed his dosages, etc. No jokes about it, that is how things worked (and it wasn't the first time, in the Midwest I found this treatment as well), none-the-less I appreciated her to the ends of the earth. To my dismay (and adding to the issues that I am having medically for my son) this afternoon I was informed by her office that she will no longer see my son because she is retiring this week. THIS WEEK! However, the issues didn't stop there, the fight with the school was beyond ridiculous. (To read further about that battle check out my emaxheath.com articles.) Autism never sleeps and it never takes a Valium; somehow though I can't imagine my life without it, chaos and all.

Seattle:

We were recently lucky enough to land an appointment at Seattle Children's Autism Center after waiting for over a year to be seen. AMAZING facility for autistic parents and children, they're too good! They bring to the forefront all the horrible things autism brings to a family, not what autistic children bring to the families but the horrible things the label, the definition, the transition, the unknown, the stresses and fears bring to us and then they come up with a way to address all of it. At this place they know how we feel and they know how our families feel, and they understand how our autistic children feel. They acknowledge them beyond a pat on the back and a smile. Their ways are flawless to an extent; for that hour you are in the room with that person you feel like family.

I walked out of there feeling hopeful, feeling like someone finally had our back, 2 weeks later I find  that feeling is crushed. Not by the Autism Center but by the people WE PAY to cover our medical care, the place that gives me no problems about my expensive psychiatric medicines but anything with 299.00 attached is treated like poison (299.00 is the diagnostic code for childhood/adolescence autism.) You see, our problem was that Seattle mentioned the magic denial phrase, the holy grail of parents of autistic children.... A.B.A. Therapy. The phrase that can send the best insurance companies and some doctors running. First thing first, find a NEW doctor to refer for Seattle and be denied again and start the fight.. Yeah, now I am in for THAT fight.. If you don't live in our world I'll translate... Basically we're more than likely screwed. (That'll never stop me though.)

Pamphlets to help obtain ABA because this fight is so common...

A.B.A. Therapy:

This therapy is expensive, beyond expensive. To the level that no family could afford it without help and 16 states still fight you on it (that fact is credited directly to the mother in the autism support group I help run that told me it.) I have been told 1,000 to 4,000 a month and that is conservative. Can you see why they deny? Doesn't make it any better does it? This therapy is proven, has been since the 60's. The Supreme Court upheld it and calls it beneficial. 1000's of parents stand by it and 10's of 1000's of families beg for it yet we all sit dumbfounded at an insurance companies power in providing it or not. Yet I set on the phone along side thousands of mothers who live my life and cry as a boy on the other end, whom has barely passed through puberty, tells me that this therapy is not beneficial to our children. To him I say: Have a child then tell me that. 

Yes parts of autism suck, the biggest part for us being Regence Bluecross.

The Stress of Raising an Autistic Child... The Murder/Suicide Tragedies..

In light of the murder/suicide of a mother and her autistic son in Vancouver this month I'd like to take a moment to address the topic. After all this isn't the first time that the frustration of raising an autistic child has led to the death of an autistic individual and their caregiver. Sadly, this is normally at the hands of the caregiver. This issue perplexes me. I can't fathom the amount of hopelessness it must take to carry out such a heinous act. I do, however, know what it is like to feel completely hopeless living with autism.

In case you haven't read the story; April 3rd Canadian mother Angie Robinson and her 16 year old son, Robert, were found dead in their home. It was ruled a murder/suicide. Robert had been diagnosed with autism at an early age and as of lately Angie had been desperately searching for help for her son. It is reported that Robert was twice the size of Angie and she had told family members how concerned she was becoming with how difficult it was to handle him. Early last month the Huffington Post reports that Robert had put his head through the window of his mother's truck during a meltdown. Angie received respite care but it wasn't really doing a whole lot to help so she had recently inquired about residential care for Robert. A decision NO parent takes lightly. However she was turned away with no help. They didn't have help for her, nothing was available. The day before she died Angie posted this on her Facebook page: "More, more, more needs to be done for our teens with special needs, they are neglected... Canada needs more residential and respite care for families hoping to keep their children at home."

As I said, this is NOT the first instance of this occurring. "I have to admit I am suffering from a severe case of battle fatigue" Kelli Stapleton wrote on her online blog in September 2013. Later her and her daughter, Isabella, were found dead of carbon monoxide poisoning. Kelli had sealed herself and her autistic daughter inside of a van and lit a charcoal grill. In December 2013 police in an Alabama town found the body of a lady in her home but couldn't find her autistic son. They later found him drown. She had drown him outside and set the house on fire with herself in it. A Mrs. Karen McCarron was sentenced to 36 years in prison in 2008 for  the suffocation of her 3 year old autistic daughter, Katie. During the taped confession Karen told the police that she just "wanted a life without autism". One last example, A lady named Wendolyn Markcrow couldn't handle the stress of raising her 12 year old autistic son, Patrick. He had severe sleep issues that left Wendolyn without many opportunities to sleep. She tried everything she could to help her son, EVERYTHING, but nothing worked. One day she snapped and put a plastic bag over his head. She admitted to screaming for him to be quiet the whole time she was suffocating him.

As autistic mothers we live and breathe for our babies, sorry, but even more so than the typical mother. The things that we 'deal' with and 'cry for' are things that normally never cross the minds of the typical parent. We do it with a grace and dignity that most couldn't muster up if their life depended on it. We go DAYS without sleeping, we get beat by our children during meltdowns, we sit in fight in IEP meetings for our children to get the basic services they need to progress, to learn. We work continuously with our children just to teach them to talk, which in some cases can take 6 or 7 years, sometimes they never speak. Think about that- some of us NEVER hear "I LOVE YOU MOMMY". I didn't until my son was 6. Some weeks we have 5 or more appointments for our children, just to help them function. All while hearing family member give us issues about us not being able to have a job outside our homes, when are we suppose to have the time? We know more laws and medication interactions than a police officer or a pharmacist. We do all this with a smile, even if it is fake at times. We have few breaks, if any at all, and NO ONE understands what it is like to be us, to live our life, unless they too live it. The stress we feel is unmatched by most. BUT when faced with situations like described above, what is the first reaction of most of us? To become angry with the mother. How hypocritical of us. I too am to blame.

These women lived lives similar to ours, and if you don't have an autistic child than they lived lives you can NEVER imagine so how dare you judge. We, as autistic parents, know the hopelessness, the feeling that nothing is ever going to help. Or most of us do. While we may not ever understand the actual act these mothers committed, we certainly understand how they felt in the days, weeks, or months leading up to the tragedies, at least to a point. Why aren't we all talking about this stuff all the time? Why aren't more of us bringing attention to the need for more services, better programs, and funding.

 I am so glad that there are a few joining me in saying that something HAS to change, there has to be definite measures put into place when it comes to these circumstances. NO PARENT SHOULD EVER FEEL SO DESPERATE FROM HEARING "NO" SO MANY TIMES THAT THEY FEEL DEATH IS THE ONLY OPTION! As Debroah Pugh, from ACT (Autism Community Training) said,“We need to develop proper systems and we need to have a situation where a family who’s desperate actually knows where to go and they can’t be told ‘we have nothing for you'. There should be a guarantee that a family who is in desperate circumstances can actually get support.” This is something that none of us can afford to become 'The Norm'. No doubt that a large number of people now know some one with an autistic child. Maybe it's time that, as a society, you become more aware of the dark side of this disorder.