The Individual Education Plan or IEP Part 4: The IEP meeting Friday, Nov 20 2009

Alright, you have done your prep work, research, and you are ready to sit down with your child’s IEP team and find the supports that will make your child successful. I’m going to start this with a list of “Dos” and “Don’ts.” If some of them seem like common sense then you are ahead of the game.

DO:

Dress Nicely
Remain Calm
Bring materials with you
Have your materials organized
Have outside OTs, PTs, SLPs and other experts attend the meeting
(If a couple) Sit on opposite sides of the table
(If single) Sit at the head of the table
Have a notepad handy and take notes

DON’T:

Dress like you are going to the gym afterward
Attack everything they team members say
Bring cookies, muffins or other snacks
Agree when told that your child doesn’t listen, sit still, etc.

First off, if you dress nicely they will take you more seriously. It seems elementary, but I have seen folks show up on clothes that looked like they had never been washed. I’m also going to give you a mantra to help you stay calm. “Whoever loses his/her temper loses the battle.” Its okay to be strong and firm, but yelling and screaming will derail all the positive work you have done in a second. If you have materials, bring them and make sure they are organized. Bring your child’s other therapists if they will attend. They can help you make a good case for your child receiving more services. You need to be able to see everyone’s faces to gauge reactions, thoughts, etc. As a couple you can do this most effectively by sitting on opposite sides of the table, and if single sit on the end.

You can’t attack everything people say and expect them to take you seriously, or even want to work with you. That’s the key to the IEP team. You have to get everyone on your child’s side. I’m not saying be a milquetoast, but respect everyone’s right to their opinion. You can change their minds later with the right tools. I’m going to capitalize and restate this one for you: DO NOT BRING COOKIES, MUFFINS OR OTHER SNACKS TO YOUR IEP MEETING! Some administrators may view it as a bribe, others may refuse on principle, but the main reason not to do it is because the IEP meeting is a business meeting, not a social event. The last one is a bit of a paradox, since I’ve told you not to attack everything they say. However, allowing people to have their say and agreeing with them are two different things. You can listen to them respectfully and still not nod your head or say “Yes I have seen that.”

The key, in my opinion, is to start the meeting positively. We are very friendly with our child’s IEP team. Typically it will start with a review of information, and this is a good time to present your child’s PLOP. Make sure it is entered in the IEP. This puts a positive view of your child right up front. Other people on the team will also add their observations at this point. This is a good thing. It starts the process that I like to call “puking.”

Working with our kids is hard. As parents, we know that. Just because it is hard, however, doesn’t mean it is impossible. However, in the beginning of the meeting I want you to listen. Be an active listener. Ask questions, make notes of rebuttals or ideas and show genuine interest. The puking can go on for over an hour, due to some weird group speak phenomenon I have witnessed. When the puking finally peters out, then and only then can you go to work. It may take a while. We have had IEP meetings lasting 3-4 hours. Don’t worry. Take all the time you need to make sure they are done puking all over the conference table, then you can start working on changing their attitude.

As an advocate, you have to be the catalyst. Since the people reading this probably don’t have a law degree, we have to figure out how to be catalysts in a positive way that makes people want to help us. The first part of that is listening. The second part is responding. Its tough to get through the puking without getting mad, but remember whoever loses his temper loses the battle. Remain calm, and make notes about how you will address these issues.

Your time to shine is when the team starts going through the modifications and supports. This is where you start asking for things, and when a team member objects using their “puke,” you simply use your notes to refute their argument. For example, one IEP meeting we attended, the consensus was that our son didn’t listen. We know that, as he has an auditory processing deficit. However, we had to let them puke that out for a good half hour. Once they were done my wife said “He has auditory processing deficits. He may not understand what you are asking him to do.” Then it was like a light bulb came on.

The real misconception with autism and autism spectrum disorders is that these kids are behavior problems. In fact, most kids on the spectrum have sensory issues and their “behavior problems” are due to overloaded sensoriums that lead to them acting out. This is the key point we need our IEP teams to understand and support. When they are puking, listen to the complaints. Are they complaining about behavior? If so, you should always put that back on them. “What was happening when he had this behavior?” “Who was in the room?” “What was the class doing?” The hope is that you can find what triggers and overloads your child’s senses and give him support then, because that’s when he needs it.

Okay, this one is long enough. Next up: What to do if things don’t work out at the table.

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The Individual Education Plan or IEP Part 2: What services should I request? Thursday, Nov 12 2009

Okay, so you have your IEP meeting scheduled and the team is preparing to assemble. Now its time to get ready. Most school districts are not going to volunteer any services, so you need to be clear about what you need going in. If possible, include your spouse or partner, and talk about what supports your child will need.

Prior to the meeting you need to write a Present Level of Performance, or PLOP. This is your chance to say something good about your child. I was lucky enough to attend a wonderful class on writing a PLOP at our local Parent Resource Center. I learned a number of strategies for presenting my son’s challenges in a positive way. The real key, I have found, is to search for causes. For example, my son is very active. However, his activity level has 2 causes. One positive, his natural curiosity, and one negative, his sensory overload. So, in his PLOP, I characterize him as being curious but suggest support for his sensory overload. You can download my son’s PLOP if you need an example.

First you must establish goals. Typically goals will require some sort of baseline report showing a deficit. Most schools will offer to do an assessment. We have always shied away from this, as we feel that school personnel training is primarily geared toward educational deficits. Add to that the fact that they are not doctors, or at least not medical doctors and you can figure out why we have always tried to have evaluations and assessments done outside of the school system. Sometimes it has cost us extra money, as our insurance doesn’t cover everything. However, having documentation to back up your claims is often necessary to get the school system to do what is necessary for your child. The goals will be established at the table by the team. I mention it here because you will need to have any evaluations and assessments you want to share available for the IEP.

Goals will typically be centered around speech and language deficits, inabilities to function in the classroom or other issues specific to your child. Our IEP has 20 goals, and they range from simple language based goals to complex social goals. Try to have an idea going in of what goals you have for your child. Do you want him to speak appropriately at his current age? Do you want him to sit still in class for 30 minute increments without assistance? Do you want him to engage his peers in a typical fashion several times throughout the day? Goals are where you put that stuff into writing.

Let’s talk about supports. Asking for support is a very appropriate way to quantify your child’s needs. For example, saying “my son has autism” doesn’t mean anything to an IEP team. However, saying “My son needs support with his academics because he has difficulty understanding the teacher” gives the team a direction to go. I would actually recommend being even more specific. For example, our son has sensory needs, and when we asked for support we were very specific. His IEP reads “sensory breaks every 30-45 minutes.” The more specific you are the easier it will be to implement your child’s IEP, or, worst case, determine if it has not been implemented.

Common supports are:

Speech therapy
Occupational Therapy
Physical Therapy
Applied Behavioral Therapy
Assistive Technology

I have always felt that a kid with a speech delay needs speech therapy 5 days a week. We have 3 days of speech at the school and we had, until recently, 2 days of speech outside the school. Our son has sensory issues, so we do 1 day of OT in school and 2 outside of school. However, we also have OT consult time built in to his IEP so the OT can help make his environment more sensory friendly. We don’t do PT or ABA but know other families who do.

Assistive technology is tougher to get. Some kids who have severe language delays can qualify for an alphasmart, or other text based communication devices. Our son uses an FM device to help with his auditory processing delay. This is simply a pair of noise cancelling headphones plugged into a small receiver. His teacher wears the microphone, and it helps him isolate her voice from the rest of the background noise.

These are just some of the options available. Get out there and talk to other parents. Network and find out what is working for other kids, then incorporate what you think will work into your action plan. Next up: Sitting down at the table for the IEP.

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Take a minute today and vote. Tuesday, Nov 3 2009

Look, I don’t like to get on my soapbox (despite all evidence to the contrary!) but if you have a child with a disability you need to be heard. We with kids on the spectrum are reaping the benefits of those who came before us, paved the way and in many cases are still fighting for the rights of our kids. Help them by finding out about your local, state and national politicians and voting.

If you can help on a campaign or lobby for our kids, that is great. You can write letter too. Every little bit helps, because our kids will be forgotten if we don’t constantly remind those in power that they have rights too. However, our rights start with the vote. It is both our privilege and responsibility to vote, so do it!

At any rate, I’m not trying to get preachy. I just want to tell everyone that if we don’t put the right people in office to advocate for our kids they will be left out. Don’t let our kids get left behind. Vote.

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The Individual Education Plan or IEP part 1: The basics Monday, Nov 2 2009

Okay, let’s start with the basic elements of the Individual Education Plan or IEP. I’ll go over who needs one, why they need one, the legalities involved and some alternatives that are allowable by law but maybe not the best for your kid.

An IEP is a plan for your child’s education that will allow you and the school to make accomodations for your child’s special needs. The official legal definition is somewhat longer, but that is sufficient for what we are doing here. IEPs are governed by the Individuals with Disabilities Education Act, or IDEA 2004. 2004 is the most recent update to the act. You can search the act in full at the Wrightslaw law center. Also, if you are looking for a good legal guide of your rights and responsibilities, wrightslaw is the best advocacy resource out there for parents.

A quick note here: If your child is in a child find/early intervention program you will not have an IEP. You will have an IFSP, or Individual Family Services Plan. When you transition to your local school that will change to an IEP.

IEPs are put together by a team, which typically consists of the parents, the child’s teacher, a school system representative, the principal of the school, the child’s case manager and any specialists that may be involved in the child’s care. For example, our IEP meetings also have an autism specialist who works for the county, an occupational therapist and a speech therapist. Those services are critical to our sons education and as such we need their input when we plan his IEP.

IEP terms last a year, and by law must be renewed prior to then.The reason this is important is that the IEP is actually a contract, enforceable and actionable by law. As such, many schools are loathe to volunteer services because they know they have to provide them. This is where we as parents need to be experts. It helps if you can speak with other parents, do some research on the internet and consult with any specialists you see prior to attending an IEP meeting.

However, if you draft an IEP and are unhappy with it, as a member of the team you have the right to call another IEP meeting at any time. At the end of every meeting everyone on the team must sign off on the IEP. Again, if you are unhappy, you do not have to sign. You can also write “signed under protest” above your signature in order to show that you are not satisfied with the school’s solutions or supports for your child.

The key thing to take away from this article is that you are the expert on your child. Administrators and teachers always present themselves as experts on children, but nobody knows more about a child than his parents. Remember that and you will do just fine.

Next up: What will the school offer me?

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Remembering things I already know, or living mindfully. Monday, Jun 22 2009

I don’t have a medical reason for being easily distractable or naturally curious. I just am, and have always been interested in my surroundings. However, because I tend to forget things easily, I am also in a constant state of re-realization when I remember things that are relevant. For example, I know that if I get a full 7-8 hours of sleep I will function and feel better the next day. However, as I run out of time during the day, I often push back my bedtime in favor of some insipid TV show or quality computer goof-off time. This normally reaches a head when I get about 3 hours sleep one night, then I remember how much sleep I need and get to bed on time for a week or two. However, pretty soon I forget and the cycle starts again.

This happens a lot with Raymond too. He is a 5 year old, so that is trying enough for most parents, but he also has autism which adds a whole extra dimension to his behavior. However, on some days when he just won’t listen, I have to rein in my temper and take several deep breaths. Then I remind myself “He has difficulty with auditory processing, so he may not hear you since there is competing background noise.” This helps me reorient, and if we are home I turn off all competing noise sources and have a talk with him. If we are in public, I take him aside to somewhere quieter and try to talk to him. Then I realize all over again how important it is that I raise my son mindfully.

Mindfully. What an odd word, but one I find more appropriate as I get older. I think the reason I get so frustrated with a number of people is that they are not mindful of their actions. I am guilty of it too. I think it is human nature to take things for granted, assume that things are going well because they are supposed to go well and forget all the work we do to keep things headed in the right direction! I know that I do a better job for my clients when I keep this thought at the top of my thought list: “Their wishes are tantamount. Mine are irrelevant.” This helps me refocus and do the absolute best job for my people. The same is true for Raymond’s therapy. When I get my head totally into it, he responds better and we make more progress. When I have other things on my mind, he can sense it and is less responsive, less interested.

So if you can take one thing from this, try living mindfully. To quote Nicholas Malebranche, “Attentiveness is the natural prayer of the soul.” Say a prayer today by paying attention. I promise your rewards will be greater than your effort.

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Biomedical and Supplements: Part 1 Sunday, Jun 7 2009

Okay, this is the first in a series of many articles on biomedical interventions. We credit a great deal of our success with Raymond’s increased functioning to our biomedical work. I had this grand idea that I would type up outlines and have some sort of cohesive master plan, but that is just not happening. Instead, I’m going to do most of this from memory.

The first thing we tried, and this was way before autism, was Transfer Factor. It is a 4Life product, and 4Life is a multilevel marketing company. Honestly, if I didn’t love the product so much I would never put up with the rah rah from the company as that sort of thing annoys me. At any rate, transfer factor is immune intelligence contained in a certain type of white blood cell. This immune intelligence is harvested from eggs and cow colostrum, so this is NOT a vegan product!  However, it works well for us, as when Raymond takes it he stays healthy and if he goes off of it he gets sick.

I found it interesting that in Dr. Bock’s book, Healing the New Childhood Epidemics, that he only found TF effective in about half of his patients.  I use it myself and it helps keep my allergies in check.  We use it in a liquid form as 4Life makes an antioxidant juice drink called Rio Vida which is much tastier than swallowing capsules.  It ain’t cheap, but its totally worth it for us.

The second thing we tried that really gave us a good burst of language was a probiotic.  For those who don’t know, probiotics are supplements of good bacteria that will help your intestine digest food and function more effectively.  You can get plant based, animal based or human based probiotics.  If you use plant or animal based probiotics you will need to swap them out every 2-3 months.  However, if you use an HMF, or Human Micro Flora, probiotic there is no need to switch them up.

Our first major experience with probiotics came a couple years back when Raymond became ill with a major rotavirus.  He was so sick he ended up in the hospital on an IV.  Naturally they slammed him with antibiotics, so our pediatrician had us take his probiotic intake from 1/4 tsp a day to a full tsp a day so we could reseed his gut with good bacteria.  (Antibiotics kill off gut bacteria FYI)  As soon as we did that we noticed increases in eye contact and language.  That’s when we knew he needed it.

The third thing we do religiously is cod liver oil.  We do 2 tsp per day, 1 tsp in the morning and one in the evening.  It really helps Raymond think and focus.  I notice on the days we miss it we have behavior issues and more temper tantrums.  Not that those are absent when he takes it, but it is better when he has it.

That’s all I’m going to do for now, as wordpress and firefox are fighting and I need to figure out why!

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Are there really people like this? Thursday, Apr 30 2009

Bullying: Its not just for school kids anymore.

I am pretty appalled at an article I read this morning. You can read it for yourself at 10news.com, but I’ll paraphrase it here.  A family in San Diego had a son diagnosed with autism at 18 months.  At a later date, the child was being bullied by another neighborhood child.  The father, an airline pilot and retired Marine, tried to talk to the other child’s parents about it.  In response, that neighbor and two others filed restraining orders against the child and his parents.

How galling!  I mean, kids will be kids.  There are bullies, and those kids need to be taught better behavior.  However, when the parents will file a lawsuit rather than admit any sort of wrongdoing on their child’s part it seems pretty obvious where the child has learned how to treat people.  What kind of message are they sending to their kids, and how is that message teaching the kids to be better people?  If I ever say something to my son like “Well buddy, sometimes its better not to talk things out and file a lawsuit to get your way” I hope he has the good sense to ignore me!

The hard part is to find the good in people when you read about something like this.  I mean, the neighbors were making crazy accusations like the 4 year old “might come out with a firearm at anytime.”  Really?  I mean, my son is 5 and couldn’t load my pistol, which I keep locked up and unloaded.  Oddly enough, the father owns one gun as well, which is also locked up.  A former Marine is familiar with gun safety!  I wonder where he learned that?

I guess the silver lining is that it was thrown out of court, and the judge ordered the neighbors to reimburse the family for their legal bills.  There are good people, and some of them are in positions of trust and doing damn good jobs.  I encourage everyone to read the article and make their own decision, but I really feel like this is an instance where the our justice system did things right.

Please folks, think about your actions with these kids.  In my experience, there is no situation that cannot be resolved amicably when approached with calmness, honesty and an open mind.  If we are all tolerant of each other then everyone wins.  Thanks for reading.

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Rock for Autism, or how I get motivated. Wednesday, Apr 8 2009

So I started thinking that different people are moved by different things. First off, my main motivation is to help my son, but sometimes I need “a little help from my friends.” My friends are songs that inspire me. Naturally my son is now a fan of some of these songs, so I’ll share a few with you.

Radio, Radio – Elvis Costello and the Attractions

I’m not a huge Elvis Costello fan, but this song really pushes me. It has a great beat and a good message. I find it telling that Raymond’s favorite line is “And the radio is in the hands of such a lot of fools trying to anesthetize the way that you feel.” He has trouble singing it, but he really loves it anyway!

Handlebars – Flobots

Okay, this is a newer addition, and I think Raymond only likes it because he is really into riding his bike right now, but it still helps get me going. A simple college alt-rock/rap anthem about power and ego. Good stuff.

One Toke Over The Line – Brewer & Shipley

I put this on a mix cd thinking Raymond might enjoy the vocal interplay and upbeat tempo. He didn’t cotton to it at first, but now he loves it. It really helps me smile and push on when things are tough.

Gnarls Barkley – Going On

Raymond likes a few Gnarls Barkley songs, but this is the one that really gets my blood pumping. “Connect the cause and effect, one foot in front of the next, this is the start of a journey.” Gets me every time.

Must Of Got Lost – J. Geils Band

Not sure why he loves this one so much, but he sure gets into it. I like it because it has a great vocal line and a driving beat. Perfect for in car listening, but I have to fast forward through Peter Wolf’s intro in the live version due to adult language.

Say Hey – Michael Franti & Spearhead

I can’t think of another song that gets me dancing in my seat like this one. Wonderful song, and you get to sing “I love you” a lot in it.

I’ll include one last song, but I will be coming back to this topic in the future. My wife has one song in particular that she dedicates to Raymond every time she hears it, and I think its pretty apropos so the lyrics are below. They’re worth a read.

When I Paint My Masterpiece – Bob Dylan

Oh, the streets of Rome are filled with rubble,
Ancient footprints are everywhere.
You can almost think that you’re seein’ double
On a cold, dark night on the Spanish Stairs.
Got to hurry on back to my hotel room,
Where I’ve got me a date with Botticelli’s niece.
She promised that she’d be right there with me
When I paint my masterpiece.

Oh, the hours I’ve spent inside the Coliseum,
Dodging lions and wastin’ time.
Oh, those mighty kings of the jungle, I could hardly stand to see ‘em,
Yes, it sure has been a long, hard climb.
Train wheels runnin’ through the back of my memory,
When I ran on the hilltop following a pack of wild geese.
Someday, everything is gonna be smooth like a rhapsody
When I paint my masterpiece.

Sailin’ ’round the world in a dirty gondola.
Oh, to be back in the land of Coca-Cola!

I left Rome and landed in Brussels,
On a plane ride so bumpy that I almost cried.
Clergymen in uniform and young girls pullin’ muscles,
Everyone was there to greet me when I stepped inside.
Newspapermen eating candy
Had to be held down by big police.
Someday, everything is gonna be diff’rent
When I paint my masterpiece.

Someday, everything is gonna be diff’rent…

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More Autism Basics: World Autism Awareness Day Thursday, Apr 2 2009

Okay, since I didn’t get a chance to blog yesterday, I’m writing another one today to make up for it. I “defined” autism in my last post, so let’s chat about the autism spectrum for a bit.

Many people don’t know that autism is a spectrum disorder. National Institutes of Health has a pretty good statement on it. “Different people with autism can have very different symptoms. Health care providers think of autism as a “spectrum” disorder, a group of disorders with similar features. One person may have mild symptoms, while another may have serious symptoms. But they both have an autism spectrum disorder.” That is a pretty good starting point.

I’m not going to get into the political battle that health insurers play with the terms, mainly because that is going to be a series of articles later this month! However, it helps folks understand why some kids seem barely affected and some kids don’t have language. The disorder has differing levels of severity and vastly different ways of showing itself.

There are also a large number of other disorders that can exist with autism. Typically a child with autism has several diagnoses. Hypotonia, or low muscle tone, is commonly associated with autism. Also, children with autism have a much higher population of folks with seizure disorder. 1 in 4 kids with autism have some sort of seizure disorder, and it is believed that autism affects the same part of the brain as epilepsy and related diseases. Motor planning issues like dyspraxia, sometimes called apraxia or motor apraxia, are common. Sensory Integration Disorder is also very common for kids on the spectrum. Speech delays are frequent, but a number of kids on the spectrum do not have speech delays. In fact, if there is no speech delay the child typically will receive a diagnosis of Aspergers Syndrome.

I find the word autism to be telling, so let’s go into some history. Dr. Leo Kanner “discovered” autism, or at least told the world about it in 1943. His paper, “Autistic Disturbance of Affective Contact” is really a fascinating piece of work. The children described are touching, but the clinical language of the day as well as the psychological perspectives are more than a little frustrating to read now. Dr. Kanner was the autism pioneer, and much of the thought regarding autism considered it a psychological condition related to the level of affection and love displayed by the mother.

Now, if you have met the moms of any kids on the spectrum you know that is patent bullshit, but that is what passed for psychology in the 1940s. The “refrigerator mom” theory was widely supported for decades, but was eventually debunked. In fact, PBS has a documentary from their POV series called “Refrigerator Mothers.” I think I’m going to buy a copy so I can see it. The site has a ton of good information and wonderful stories.

Enter Dr. Bernard Rimland, the man who gave us all hope. Dr. Rimland was the founder of the Autism Research Institute, or ARI, and was the first doctor to really push for research on the disorder. ARI served as a clearinghouse for clinical information on the disorder, and eventually the Defeat Autism Now! protocol was born out of that research.

Dr. Rimland was the first to suggest that autism is an autoimmune disorder instead of a psychological disorder, and he also first posited that autism was caused by mercury toxicity from thimerosal, a form of mercury used in vaccines. Unfortunately, rather than funding serious study into the possibility, the CDC held a secret meeting at Simpsonwood discussing the issue with several vaccine makers. They ultimately decided to cover it up, and the CDC issued a “request” for vaccines free from thimerosal.

Luckily the information did come to light, and Robert F. Kennedy Jr. wrote a scathing article about the issue called “Deadly Immunity.” He also spoke on MSNBC about it, and I’ve linked it below.

Every time I read and talk about this I get so mad I can hardly see, so I’m going to stop here. Up tomorrow: Aspergers Syndrome.

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World Autism Awareness Day Thursday, Apr 2 2009

Or World Autism Day, depending on who you ask. Today is a pretty good day to talk about all things related to autism, but the key is getting people to understand. I am committed to posting at least once a day on my blog during the month of April, which is National Autism Awareness Month, just to help educate and inform. So I think I’ll start today with the basics.

Autism Awareness Ribbon

What is autism? Well, according to the Diagnostic and Statistical Manual Volum IV (DSM-IV), you have autism if:

A. A total of six (or more) items from (1), (2), and (3), with at
least two from (1), and one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by
at least two of the following:

a) marked impairments in the use of multiple nonverbal behaviors
such as eye-to-eye gaze, facial expression, body posture, and
gestures to regulate social interaction

b) failure to develop peer relationships appropriate to
developmental level

c) a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people, (e.g., by a lack of showing,
bringing, or pointing out objects of interest to other people)

d) lack of social or emotional reciprocity ( note: in the
description, it gives the following as examples: not actively
participating in simple social play or games, preferring solitary
activities, or involving others in activities only as tools or
“mechanical” aids )

(2) qualitative impairments in communication as manifested by at
least one of the following:

a) delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through alternative
modes of communication such as gesture or mime)

b) in individuals with adequate speech, marked impairment in the
ability to initiate or sustain a conversation with others

c) stereotyped and repetitive use of language or idiosyncratic
language

d) lack of varied, spontaneous make-believe play or social
imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior,
interests and activities, as manifested by at least two of the
following:

a) encompassing preoccupation with one or more stereotyped and
restricted patterns of interest that is abnormal either in
intensity or focus

b) apparently inflexible adherence to specific, nonfunctional
routines or rituals

c) stereotyped and repetitive motor mannerisms (e.g hand or finger
flapping or twisting, or complex whole-body movements)

d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following
areas, with onset prior to age 3 years:

(1) social interaction

(2) language as used in social communication

(3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett’s Disorder
or Childhood Disintegrative Disorder

I understand that doesn’t really give you a definition, but may help you understand that autism is not a cut and dried diagnosis, like a sinus infection or even diabetes. The Autism Society of America defines autism as “a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.“

Awareness can help. Many people I have spoken with don’t really understand why awareness helps families with autism. Let me give you some examples from my life where awareness would have made life easier. First off, my son Raymond has High Functioning Autism. Much of the time he presents like a typical kid. However, when you begin to engage him you start to see his issues. One of his issues is auditory processing. He has acute hearing but has difficulty processing and making sense of sounds. Imagine how difficult simple things like shopping and riding in a car could be! Well, when I am in public and Raymond starts to melt down, I am typically very calm. I attempt to redirect him, offer him fidgets or whatever toys I have stuffed in my jacket pocket, but I keep on shopping or doing what I’m doing.
I can tell this frustrates some people. I get the looks. You know, the “why can’t you control your kid” looks that parents get from non-parents. I ignore them now, but when we were first discovering these things I actually had people come up to me and ask “what are you doing to that child.” Naturally I had some choice words for them, but on reflection I wish I could address them again and say the following:

“My son has autism, a severe developmental disorder. He has difficulty remaining calm in crowded or busy surroundings. Unfortunately, I still have to buy groceries and clothing or my family will walk around naked and starving. If this inconveniences you, I’m sorry, but understand it is only an inconvenience to you. It is much more than that to me. In the future, please try to be considerate of parents who are trying to handle their children. They might be going through something you cannot understand. Thank you.”

So awareness helps. Be kind, and understand that people who are not typical have the same rights to public places that you do. If you are not a tolerant person, give it a try. I promise you will get more than you give.

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