How Invisible Disabilities Are Not Always Accommodated

"You can just wait like everyone else" a sour faced receptionist shot at me. "You mothers of Autistic kids always come in here expecting special treatment when your children are just as capable of waiting in line as any other child is." No. She. Didn't. She didn't just go there. It's 7:05 am at a Lab Corp facility where I need to get my daughter's blood drawn to check her med levels. The tiny, sterile waiting area is wall to wall with people, spilling out into the halls. The wait is likely close to an hour. My child, very severe on the autistic spectrum, does not handle crowds, cramped spaces, uncertainty, waiting, and other general realities of life very well. As she is utterly non-verbal, she has no other way to communicate her discomfort other than behavioral meltdown. I'm completely in a panic and feel the hundred eyes in the waiting room on me and my "different" child. People shift nervously in their seats as my daughter jumps, squeals, moans, drools, hits, and otherwise does not act like a typical citizen in a typical waiting room on a typical day. I feel like I have to apologize for being out in public. For corrupting their "normal" lives with the abnormality of our presence. When I realize the length of the wait, the conditions of the waiting area, and my child's difficulty with such sensory overload, I start to deliberate whether or not I should ask the staff people if any accommodations can be made for my daughter. She also has Emla Cream (a topical numbing agent) on her arms to prevent pain upon blood draw that would wear off in about 30 minutes. Without her arms numb, she will kick, spit, bite, freak out, and become traumatized by yet another medical procedure that she has endured over her entire lifetime. Flushed, feeling conspicuous, fragile, and anxious I go to the front desk seeking assistance, empathy, and yes, I suppose a little special treatment. What I get is the quote with which I opened this post from "Sally," a phlebotomist manning the front desk. It's interesting to me that there are people in this world, although certainly few and far in between, who look upon parents of special children in this way. That we are using our child's disability as an excuse or a rationale for a free handout, special treatment, attention, or accolade. Unfortunately, this poisonous attitude seems to be reserved for the disabilities that are less physical and perhaps less easily understood. When a child has ADHD, Conduct Disorder, Intermittent Explosive Disorder, Autistic Spectrum Disorder, Tourette's, or a psychiatric diagnosis they sometimes are seen as having more control of their undesirable behavior than a child who physically appears different (as a child with Downs Syndrome, Multiple Sclerosis, etc). Often times the implication is that it is the remiss, lax parent who cannot "control" their child, and not the child's disorder that is at the root of the problem. Our society has certainly come a far way from the "Refrigerator Mother" theory of Autism, but at times like this, I see that not everyone is as enlightened as I might have assumed. Clearly Sally felt that any special treatment my daughter would receive was undeserving. In her words, her accusation, my daughter could "wait like any other child." No, you compassionless, ignorant shrew, that's the problem: She CANNOT wait like any other child. She is NOT any other child. She is not in control of herself. Her AUTISM is in control. Her brain is structurally different. She has chronic static encephalopathy, generalized seizure disorder, severe to profound cognitive impairments, sensory/nervous system deficits and Autism. She is disabled. She looks rather "normal," but she is disabled. My God, she eats her own sh*t for heaven's sake! She cannot "wait" in this overcrowded, fluorescently lit waiting room without making everyone's life a living hell. She is not spoiled. She is not poorly disciplined. She has Autism. Ever hear of it? She is 13 years old and she cannot dress herself, bathe herself, pee on the toilet, take care of her menses, buckle in her own seat belt, open a container, brush her hair, say "Mommy" or anything more than the 8 word approximations that comprise her vocabulary. The audacity of me to request a little special attention! I am so sorry. How dare I cash in on a no-wait pass at Disney or a little respite care through Division of Developmental Disabilities. What a heinous, self-serving mother I am! And, to expect a little help at a facility that provides patient care? I am so used to getting my ass kissed because of my child's special needs that it certainly makes living with Autism so rewarding! Boy I'm making out like a bandit, alright. I get to cut in line at Lab Corp, which certainly counterbalances the fact that I also get to clean up her almost daily fecal smears, worry about her running away, spend about a million dollars to take care of her the rest of her life, and manage every aspect of her self care. I get to stress about the severe seizure disorder that has landed her in the hospital numerous times starting at 4 months of age. A seizure disorder that could realistically be the death of her. Please forgive me for my selfish request. I am not worthy. She is not worthy. She's only autistic after all. She'll manage. We'll sit and wait like everyone else, because after all, we ARE like everyone else, aren't we?!? So, what's next Miss Sally? Will a person confined to a wheelchair have the audacity to ask for a ramp? Will a blind person have the presumption to ask for signs in Braille or permission to bring their seeing eye dog into the waiting room? Last time I checked, accommodations for disabilities was the law. Last time I checked, Autism was a disability. Autism does indeed suck, but there is one thing that sucks even more. The attitude of Sally and others like her. An attitude of ignorance and hurtfulness, wielded like a dagger; slashing at a wound that has already been hemorrhaging for years. A wound only a few ever bother to see. Alicia D. is the mother of 4 young children, her eldest is diagnosed with Autism. She is a Stay At Home Mom with a Doctorate Degree in Clinical Psychology, which is only useful if she's trying to be intimidating at an IEP meeting. Alicia is also a budding freelance writer and blogs about the mayhem of motherhood at Welcome To My Planet .

Am I Doing It Right?

I feel so fortunate that Bacon is 'high functioning' and that he appears to everyone to be a 'normal' kid. I am also beyond blessed that our school district is so great at offering the services that he needs and has such excellent teachers for him. 

I recently returned to work full time though, and am not as involved in his day to day (read here every single second of everything that is going on) activities. I am worried that this is going to cause all kinds of trauma and distress to him in the long run though. The guilt is sometimes horrific. 

Also we are still having all kinds of issues with sensory potty training issues. Part of it is attributed to age I know, but then part of me feels like this will be a never ending battle because of the Asperger's. I cannot remember the last time we went a full day without a pee or poop accident. We take away privileges, we remind him endlessly to go, and still nothing works. He is about 75% trained and has 3 months until he turns 5. I wouldn't be so worried if he wasn't going to mainstream kindergarten, where peeing your pants can turn into some kind of ridiculing nightmare. 

He also still won't sleep in his own bed. He starts there, but always ends up in our bed. We have tried the Super Nanny method of escorting him back to bed 7,952 times, we tried weighted blankets (which freaked him out) sticker reward charts, money, begging and nothing works. I get up at 4am so the constant up and down just doesn't really work for me because I have to sleep in order to be alert for work!

Did I do it wrong by not getting him into OT? Did I do him a disservice by not keeping him in psychotherapy with the lady that was by the train tracks? (Trains are his thing, and every time a train went by he went crazy.) Or am I doing okay, by sort of letting him work it out on his own with school and seeing how it goes? 

He has made so much progress! He can have a conversation with people, he can recognize people's feelings, he can write his name! He is adding! He asks me how MY DAY WAS! Things I NEVER thought I would see...and I know that some parents of kids with Asperger's and Autism will never see. 

I still worry that I am doing it wrong, that I am not doing enough for him. Am I crazy? Or is this what being a mom is like? 

Mrs. Tantrum has a 4 1/2 year old son with Asperger's. She has been married for 11 years, and works full time outside the home. To read more about her crazy life,  her thoughts about random things, Coffee, Anxiety and more, head over to her blog Momma's Tantrum. She posts there every day, or pretty darn close to every day. 

For the Holidays

Just a reminder that the Holidays can really suck if you have a child with autism. Sucks for them, sucks for you, sucks for everyone around. In regards to the kids, it's mostly overstimulation. Too much going on, changes in their routine, overload of gifts and people and BOOM! Meltdown City. Sometimes it just can't be helped, but try your best to make things business as usual for your kids on the spectrum. Don't let your relatives push you or your kids into a situation that will lead to even more chaos. If you have determined that your kids can only handle opening 3 gifts at a time without going into a paper tearing, package wrecking frenzy, then don't let great aunt Sally push another present on little Johnny as she says, "Oh, it's just one more! What can it hurt? I want to see his face when he opens it!" (side note: often little Johnny will not ever remember who gave him what, let alone remember who great aunt Sally is.) If this does happen, great aunt Sally will be the one with the weird look on her face as little Johnny opens the present, takes one look and tosses it aside, as it's not what he's currently fixated on. It's also a very lonely time of year for us grownups. Often, even our families don't fully comprehend what autism is (heck, they don't live it 24/7). They shake their heads at the kids' outbursts, furrow their brows and look aghast at the weird behaviors, and often will request that you and your 'special' kids come late and leave early, if you're invited at all. You'd think that people would be more accommodating, as it's the kids that have the disability, yet all sorts of otherwise 'typical' adults are either so uncomfortable with your kids autism or so inflexible at having their 'good' holiday 'ruined' that they just don't want you & your non-typical mess around. I learned, after many years of trying to integrate the boys into the usual family gatherings, that it was too rough on the boys, as well as me. Now we host Christmas Eve at my house, we invite everyone, and only ask that people let us know how many are coming, so we can have enough food and time to prep the boys. This is good for the boys, who can wander off at will and play with those things that are familiar to them. The problem with this set-up is that a lot of time, not everyone comes, or they will come late and leave early so as not to have to deal with the autism world too long. Either way, you often find yourself alone for a good chunk of the holidays, with only your autistic non-social kids to keep you company. I have no solution to this, other than to tell you to keep tabs on your friends who also have kids on the spectrum, because they're the only ones who really know what you're going through. Total side note but also relevant - please be careful of light displays with blinking or flashing lights. These can often trigger seizures in special needs kids, and just because yours hasn't had one yet doesn't mean it's never going to happen. Better to be safe than in the emergency room on Christmas. Bobbie is the mother of twin boys with autism, one high-functioning and one lower-functioning. She doesn't have time to blog, but you can follow her on twitter: @Bobbie42

For Parents Who Are Torn Between Autism Acceptance and Autism Treatment...

If you feel torn between accepting your child with autism and treating them, there is no need for you to. That’s right; you do not have to choose between accepting your child who has autism and treating their autism. You can do both. I repeat: You can fully accept your child with autism AND you can treat your child’s autism without in any way diminishing your acceptance of or respect for your child. You should unconditionally love and wholly accept your child who has autism simply because he or she is your child. As parents, we love and embrace the children we have been blessed with because that’s what parents do. As parents of children who have autism, we must acknowledge that autism is a part of who our children are and that autism will affect them, us, and other loved ones… because that is our reality. Our children are who they are, and their autism is an important element of who they are. We must accept them for who they are and support them as best as we can. It is your right, privilege, responsibility and obligation to make decisions that are in your child’s best interest. If you are researching and implementing therapies, treatments and other interventions that you believe will be beneficial to your child and will help them to lead a productive, meaningful and fulfilling life with the greatest degree of dignity and independence possible, then you are doing the right thing. I implore you to avoid feeling compelled to choose between accepting your child and treating your child. You don’t have to; you don’t need to; and you shouldn’t. Rather than choose sides, choose to accept your child for who he or she is and to help him or her reach their full potential. Michelle McFarland-McDaniels is the mom of two beautiful preteen girls who have autism. She is also a wife, writer, blogger and teacher. Michelle publishes the Autism Assistance Resources and Information blog. She is also the publisher of Funding Autism Treatment and College Resources for Students with Autism.

Hey Bully, you Suck!

Nothing hurts more than watching your child be hurt and ostracized time and time again by other kids. Mean kids.. Suck! The neighbor kid used to jump our fence and play with my son's yard toys (swingset and sandbox). It would be one thing if he was coming over to play with my son, but he wasn't. He never had anything nice to say about him or to him, for that matter. He'd just make comments and say "He's wierd", "What's wrong with him", "I don't like him". I believed for a long time this was just because he was young (about 5 or 6 at the time) and just didn't know any better. Then, I found out he was in an inclusive classroom and around autistic kids all the time. I thought, dear god - please tell me he is not like this with the kids at school. And if he is, please let a teacher guide him. But it just kept happening. It became clear, he was just going to continue talking about my son in a rude manner right in front of him as if my son didn't even exist. Hey kid, he might not talk a lot, but he heard every word that you said. It made me boil inside. I had enough! I got off my wimpy butt and I talked to his parents. His mother was somewhat apologetic and said she would talk to him. And still, he was mean. He would climb our fence any time we were outside (and sometimes when we weren't outside) and play in our yard. This drove me bonkers (for liability reasons and also just out of a plain lack of respect). Finally, one day when he was half over our fence headed into our yard I told him: "If you come in our yard and play with Alex's toys, you need to be nice to Alex and not rude.". The next day his parents asked me why I yelled at their son. I told them exactly what I said, and they couldn't argue with it. Two years later, every time we go outside in our yard this kid still does the same kind of stuff. And, because of it we don't play in our own yard nearly as much as we should. How sad is it that my own kids can't enjoy playing in their own yard, with their own toys? We were recently at a birthday party and a kid called my son "stupid" over and over and over again because of something he did that was completely innocent to him, and a part of his Autism. I've come to realize that my son has a target on his back, Autism. Pick on me. Easy Target. A sacrificial lamb. and it sucks! Here's what I want to know: Is your autistic child the prey of bullies and on the receiving end of teasing by other kids? How do you handle this? I'd love any pointers because it is killing me to witness this happen to my kid time and time and time again. Just stop being mean to my kid, ok. It is Killing me! Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life with an autistic genius and a neurotypical diva, the gluten & casein free diet, vaccination choice, and more... over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons. Got Bon Bons?

I suppose the time has come

J is 7 now and in the 2nd grade, he has Autism. This little "blob" is a portion from my regular blog. I decided to post it over in here in hopes that I might get some good ideas or insight how others have handled this. Thanks in advance. The bridge I need to start walking on has got me SKEERED!! ********** J, is J. My joyous J. It's time to have the Autism talk, it's time to name it. It's not like he doesn't KNOW (duh). He has a para with him all day. He is has special services. He is getting teased. We knew it was coming, I thought I was prepared. I was not. It took me off guard. Can you ever really be prepared for that? I got to see it first hand on the field trip. Little bastards did it in front of me. Ballsy kids don't you think? Did J realize what was going on? I don't think so, but I'm not sure. What he did realize is that he was trying to be included in the play but was not being included and I'm sure he could not figure out why. Painful on levels I will never be able to express. When I addressed the issue in the parent teacher conference his teacher flipped her lid. Why didn't I come to her right away? Why? I suppose I needed to process it. I needed to figure out how I wanted to handle it. I want peer education, sensitivity training. Not in Autism, in kindness. We are ALL different. Thankfully, I am being supported. It has also given me the push to step onto the bridge I haven't wanted to walk. It's time for the talk. Somehow life has a way of making you put one foot in front of the other if you want to or not. ************** I know there are books out there that I am looking into. What I'm really after are personal stories, experience from the frontlines! My name is Becky, mom to J who was diagnosed at age 2 with Autism. I get through one day at a time the only way I know how, by putting one foot in front of the other.

MY FIRST POST - Autism and Education

Some days you feel as though you are winning. Other days it is as though you’re being bombarded from every angle and you just cant do anything right. I’m on the phone to a mum informing her we have had some problems with her son kicking another student. I like to get in early and pre-empt the return call, as I know mum will be on the phone as soon as her son gets home and tells her the details. Mum understands the situation and I book her in for an interview tomorrow morning. We have come a long way together. From the days of school refusal because a student in his class didn’t share the same opinion he had on a computer game. To refusing to eat anything at school because the other kids called him “cheese disease”. I’m relatively new to the world of Autism and Asperger. When I was at University they prepared you by sending you out to a Special School Unit to get some hands on experience. They had you read scholarly article after article, written by boffins squirreled away in universities, on ways of managing students with Autism. I’m sure I wrote over 30 000 words outlining how I would meet the students needs, all backed up with reference to the latest developments and theories. Something you quickly learn when you meet a child who has Autism is that they are individuals. Generalisations go out the window with many of the theories and interventions. I have come across some students who are happy to shut themselves off from everything. At lunchtime they escape, with their blazer over their head, in a book or a hand held computer game. Whilst others want to be out on the football field or hanging around the staff room talking to people. Some are very self absorbed in class and are reluctant to share. Whilst others, accidentally touch on a topic of interest and they could talk everyone's ears off. The common factor amongst them all is their social interactions, or difficulty with. If you have a child on the AS spectrum and you’re reading this then you are all too familiar that children with Asperger and to a varying degree Autism are very self- absorbed. Everything is about them, to the vexation of their peers. I find it difficult to actually define my job title at times as I do so many different things. I am Head of Year Eight and Nine and I teach History. I help run our learning support department and assist the school’s Special Education Needs Coordinator. Basically I’m the go between home and the teacher. Being caught in the middle is like acting out the fable about the man with his son and donkey, going to the market. You can’t keep everyone happy. A line from a parent I spoke to last week sums up the issue “I am all for children with Autism coming to the school, but where do you draw the line when it starts to impact on our kids. How many exceptions are our children supposed to make”? This is like saying "I am racially tolerant but id hate for an ethnic family to move into my neighbourhood". Start to read through the stories i post on my blog and you soon get a picture of the parents im talking about. Something that still stumps me when dealing with Autistic students is that nothing is ever straight forward. The most notable case of late is of a student in Year Nine who has Asperger. I made reference to him in my opening paragraph. “Cheese Disease”, the name kids called him last year, and the reason he didn’t want to go to school. I was appalled at this and jumped on the students straight away. Later I hear that they called Andy this because he was bragging about the fact that he could eat his packed lunch of cheese sandwiches instead of the compulsory school dinners, which the students hate. I find that Students with Autism are often coupled with other disorders, the most common being Obsessive Compulsive Disorder (OCD). In Andy’s case he will only eat cheese, Jam filled biscuits and potatoe smiley faces (of a particular brand, mum has to keep old packets in case the packaging changes). This plays havoc with his health. When I tried to explain to the Head of the Kitchen why he wasn’t having school dinners, he wasn’t having it, saying, “well if I was his parents I’d just say eat it or have nothing”. There is no arguing with these people who have such a shallow insight. I didn’t bother to tell him that his mum had tried this and the result was Andy being admitted to hospital after not eating for three days. Now back to the issue of the complaining parent. Andy had been given two pet rats for his birthday and he had taken photos of them in to show his classmates. Andy persists with showing the pictures to everyone whether they want to see them or not. The next day I get a phone call from Andy’s mum saying Andy is refusing to come to school. I have her bring Andy in and she tells me the kids have been teasing him. They said that they didn’t like his rats. They said that he looked like his rats. They said that rats are vermin, so Andy must be vermin. I’m actually surprised the Year Nines know the word vermin but this is what Andy’s mum says. I attempt to get to the bottom of the story as I’m shocked to hear that bullying had taken place. I’m more shocked at the kids saying these things. As thankfully, bullying is quite rare at the school. I take one of the students from class and question him about the comments. He freely admits saying those things to Andy. This makes me angry. I begin to question why. It emerges that Andy constantly bragged about the rats and at every moment he had the picture out showing people. When someone said the rats were vermin this only fuelled the bragging. When someone said, “put the photo away I don’t like rats”, this only made him get the photo out more. Eventually the comments had come from pure frustration. Now here is my problem. The names were quite hurtful and did constitute bullying. But at the same time they had come as a response to the behaviour of Andy. I called the parents of the student’s at the centre of the bullying accusation and I was met with the response. “My son has an aversion towards rats so I can defend his actions”. I could also see the parents and students’ point of view. A Year Nine student hasn’t developed the social decorum to hold back on insults when faced with frustration. Their response to the bragging was to reply with an insult. For Andy this is confusing as he doesn’t see his behaviour as bragging and can’t understand the response the other students have to something he sees as deeply interesting. So here develops another problem. None of the other students want to be around Andy because he is annoying and if they say anything to him about how annoying he is they will get into trouble. Compounding this Andy knows this also. So he does not want to tell on anyone even if he thinks they are bullying. This is just one incident this year with one student. The school I work in is in the Independent sector and draws students who would benefit from a smaller setting. Over the past two years our clientele with additional needs has grown exponentially. 90% of the students have some form of learning difficulty and approximately 20% are statemented. For those unfamiliar with the U.K. system, Statementing is a process of identifying need’s and provides funding based on that need, so the students can attend mainstream schools. As you can imagine the people who hold the purse strings and give statements are tight and many parents especially the ones that are not well educated or familiar with the system miss out. This is a whole other issue and I wont get into it at this stage. In the U.K the fazing out of special schools has meant that SEN students are integrated and have access to the same education and opportunities as all children. Most schools have a special education coordinator and a team of classroom assistants. To give you a scale of the support we have 35 members of teaching staff and 26 learning support assistants. Many old teachers here despair at the influx of SEN students we take in, but looking at the successes we have it can’t be denied that the small setting with adequate support is the way to get the best out of these kids. I look back over my post now before publishing and i hope it does not offend. I hope parents can see the dilemma when faced with integration. My next post here will be about a boy I'm trying to help who says inappropriate comments all the time. Help with this one will be much appreciated. so stay tuned. Matt writes a regular blog of his own about his teaching at Trials In The Life of a Teacher. Feel free to make comments and offer him advice. On the same hand if you need advice on education and Autism feel free to drop him a line.