Paying for autism, can we really afford it?

Disclaimer:  My desire is to keep Parenting Autism focused on parenting subjects but often parenting a child with autism and politics blur the lines and I have to discuss the boarder implications of policy decisions.  Thank you for your continued support.

Over the last few months I have been working with a group of parents and professionals (VT CAIR) on lobbying the Vermont legislature to not repeal the autism insurance reform law that passed and  was signed into law  last year.   ACT 127 (aka Autism Insurance Reform) mandates insurance companies and Medicaid to pay for autism services (behavioral therapy, occupational therapy, physical therapy, speech therapy) for children 18 months old to six years old.  After last session we felt good, we got some needed legislation passed with some concessions but that is politics, right? 


Then we went into the current session (2011) with a new Democratic Governor and we thought, great!  ACT 127 was ready to expand to include individuals above six years old, but we got stopped right on the State House steps.  Governor Shumlin and the Democratic house and senate had not put the money into the budget to fulfill their Medicaid commitment and their best option was repealing ACT 127.  We said no, no, we will compromise and this year we will take just private insurance ($.70 a month per premium holder) and then next year we can implement Medicaid coverage.  Even that got months of debate.


This is where I have problem, whether it is a political, moral, spiritual, or intellectual problem I am not sure, you can decide.  Here is my dilemma: for the price of an apple every month we decided children with autism (and their families) are not worth the medical treatment they deserve and need. 


How can this happen in a liberal, New England state in the richest country in the world?  I don't know.  The political, cynical side of me understands that the vulnerable are always targeted in tough economic times, but the hopeful side fights back with confusion.  How did our nation, the great "melting pot", arrive here, where children are not getting medical care they need.  We are all responsible because for far too long in this country we turn the other way and say, "well, that's not my problem."


We get consumed with our busy lives and end-up walking around with blinders on, not seeing that our neighbors need help.  This is not a Vermont problem.  Accessing proper treatment for children with autism exists all across our nation.  Some states are slowly passing legislation to mandate insurance companies to pay for autism services, but more needs to be done.



The longer we wait the higher the price tag.  Not just in the children getting denied access to healthcare but in real dollars and cents.  According to the Autism Society of America, " (the) cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention."  As a society we are making a choice to limit opportunities to children with autism and to assume the skyrocketing cost of adult care unless we look at our fellow citizens and take care of each other.

Related blog post:  Vermont State House Passes Autism Insurance Bill

Stay Fit while Getting Centered

“What happened to Tristan yesterday?” asked his case manager at school. 

I tilted my head with a dash of confusion and slight terror as Tristan has gotten himself into some tricky social situations recently and said, “What do you mean?” 

As her eyes widened, she said, “Well, Tristan was so focused during our sessions today.  No flopping on the floor or fidgeting in his seat.”

Suddenly I knew what she was talking about; Tristan had swum the night before.  Not dawdling around the pool with us, but swim team.  Seventy-five minutes of working on strokes and swimming laps. 

Often kids on the spectrum (my kid included) prefer play a video game to getting their heart pumping.  The rules can be difficult to follow and interacting with peers— well, is tough and most youth activities that keep you “lean and cute” are team sports.  All kids (rather all people) need regular exercise to stay healthy mentally and physically, so here is a list of some sports/activities that kids on the spectrum have enjoyed:

·        Swimming:  Try a local non-competitive swim team to learn different stokes and to get your body moving.

·        Ice Skating:  Take a US Figure Skating group lesson.  Some kids love the gliding on the ice and feeling the wind on their faces.

·        Downhill Skiing: Again the wind on the face is loved by all that crave sensory stimulation.  Schedule a private lesson on a beginner slope to learn how-to turn and stop.

·        Biking:  Once you get the technique down, biking can be freedom while working your muscles.

·        Martial Arts:  Discipline and moving your body are pieces to martial arts.

·        Quidditch:  This is a team game, but for Harry Potter fans (like Tristan) it can be trilling.  Check your local Parks and Recreation for Quidditch teams in your area.

Last tip:  inform the instructor that your child has autism and tell them how best your child learns or what to do with unwanted behaviors.  Remember they might not know what autism is or how to help your child, so give them some clues and help.

Snap that Umbilical Cord

For many months, perhaps even years, I have been preparing for this day.  I am not birthing a child or graduating from school or giving my vows of marriage, I have done all that, no this afternoon I cut the umbilical cord.  Not the one Peter slit, but the cord of dependence that has been stretched to the point of breakage.

Over the summer Peter and I began leaving Tristan home alone while we ran two blocks to pick-up milk and bread.  Just like teaching Tristan how-to communicate or what social cues look like, we have coached Tristan in being responsible while being home alone.  Being home alone is one thing, but now Tristan will be walking from school to the library with friends.  Two blocks, one side street to cross, and hanging-out with the others kids that is what I will face this afternoon.

My friend, Diana, said you could spy from across the street.  As much as I want to jump behind the bushes and experience Tristan’s independence with him that would be just stretching the cord further not snapping it.  We moved to this town of 8,000 residents so our children could grow-up walking to school and to the store.  In the 1970’s I walked to kindergarten with a friend, without a parent.  Today, crime is lower than the 1970s and 1980s and I still have ping in the stomach every time I think of Tristan strutting down the sidewalk.  

Just like the sadness and anxiety of weaning a nursing baby or leaving your kindergartener at school, plunging your child into the world without you is another milestone toward adulthood.  The sadness comes with the realization that you can never turn back.  It is not like I can begin nursing my eight year old again as much as I might miss the cuddling, I really don’t miss always carrying a baby, so we are moving forward and growing (hopefully not horizontally). 

What to do with a Public Meltdown

All the lunch-goers at Faneuil Hall in Boston probably expected a peaceful lunch while people watching from their cafe tables.  Instead they got Liam in total melt-down mode for about as long as it takes to order drinks and your meal, then to have the chef prepare your burger and fries and for you to consume all of it.  I should have seen the melt-down coming, Liam had the right forecast-- barely any sleep the night before, it was lunch time, and we were in Boston, three hours from our house.  But the sunshine and seventy degree weather blinded my perspective. For 45 minutes I sat with Liam on a bench while he tried to stop screaming, "I want new, green Crocs."  I wished he would stop screaming, kicking, and hitting, but hoping and crossing all my toes and fingers did not seem to help.  So, I pulled-out my parenting toolbox right-on one of the busiest spots in Boston and went to work. Even though I am writing about Liam, who is typically developing, kids are kids first before any diagnosis (like autism) and all kids have tantrums and sometimes they have meltdowns.  Tantrum vs. meltdown:  I think of tantrums as a power struggle (I want this toy and you will buy it or I will scream) and meltdowns are a complete loss of control.  There is no reasoning or distracting, the meltdown just has to run its course.   I bet most of these melt-downs happen in the public eye.   As a parent you probably know what triggered the meltdown-- a sound, plummeting blood sugar levels, lack of sleep, a sensory overload, or all of the above.  So, what do you do in the middle of a busy tourist destination with a screaming, kicking kid? First, check-in with yourself-- are you calm?  Have you lowered your voice?  Are you remembering to breath slowly?  Allow yourself to pause and not be in a rush. Second, forget about the on-lookers!  Either they are empathic (I have been there with my child) or annoyed and probably have never raised children.  Focus on your kid, remember this can be a teachable moment (self regulation). Third, find a quiet, empty space for your child to sit and place him there.  Tell him why he is being place in the spot (I use the same language as at home-- break spot or time-out spot).  Remember to keep your language simple and clear, like "Liam, you can get up when stop crying, kicking, and hitting." If your child gets up or tries to make break-for-it set him back down in the "break" spot without any words.  And keep doing it, don't break and give into the meltdown... you have come so far, don't give-up now.  Remember you are teaching emotional regulation, once your child calms then you can move-on. Now this is the hard part, you need to WAIT until they can get themselves together and out of meltdown mode. Finally, when all is calm (or at least somewhat reasonable) hug and move-on to getting sleep, food, or a less busy environment. We all have our moments when life gets to overwhelming and we break, however most adults have learned strategies to cope with their own meltdowns and that is what children need to practice.  Think of meltdowns as practice in emotional regulation and the more your child practices the better they will be in control of themselves.

Time for a change...

Today is a new day... at least for my blog.  For last three years I have been blogging on Blogger and I have finally made the switch to adding these words directly to my website.  I think it will be easier for readers to scan the Parenting Autism website for new stuff while also keeping up with my blog.  Two different website to maintain made my head spin which sometimes resulted in lack of writing. 

So, if you vow to come back here and read my blog, then I promise to write more often.  Got to run after some little boys.  Hugs, Angela

Parenthood... Is it good or bad for the autism community?

I love to junk-out on TV.  That doesn't mean I actually get to watch mainly due to the fact we don't own a television.  Like many other families with kids on the spectrum, we gave away our T.V. after we caught two year old, Tristan watching static.  I guess now not owning a tube doesn't stop you from watching shows online which I do a few times a week, but I do find myself having to schedule and prioritize. 

Last night I found myself watching Parenthood once again.  Parenthood entertains and keeps me coming back week after week.  At first I wanted to see how the writers and actors would incorporate the Aspie character, Max, but now Parenthood draws me into the drama of the relationships and struggles families face.

Sure, Parenthood is a Hollywood version of real life and always seems to end the hour on an upbeat.  Like last episode when Max received his first home behavioral services and by the end of the show Max had his first play interaction.  Not so realistic, but at least the mainstream gets a glimpse of the challenges and joys faced by a family affected by ASD.

Frankly, the most misleading part was in the second episode when Max, who is highly functioning, was asked to leave public school and the parents agreed.   First Parenthood sent a message to their viewers that parents are suddenly able to enroll their child in a private school and that they were able to dig up the money to pay.  But, the most disturbing part of the story line is that the writers erased the last thirty years of special education law that clearly states that all students are entitled to an education even if the school district must make accommodations.  

Instead of portraying parents working with their public school to create an educational environment conducive to learning  for their child with ASD, the writers took the bland way out.  Often advocating for your child within the public school offers some great stories that the Parenthood writers could have pulled from.  Perhaps the writing staff should call some parents with kids on the spectrum to see what everyday life is really like for families.

With that said I guess I will sit down tonight and watch this week's episode and I am sure I will be entertained. 

Kill or not to kill

When socialite and millionaire Gigi Jordan feed her eight-year-old son with autism a lethal dose Ambien and Xanax, the autism community once again failed. Last night sitting on my bed, phone to my ear chatting with a New York reporter about the latest mother-homicide related to autism and the reporter's words sent a chill down my spine, "...this is such an unusually, sad case."

Not really. Days after police were barging into Jordan's $2,000 a night hotel room, a grandmother in Coney Island locked her 11 year-old grandson with autism, alone in their house that caught on fire and killed the boy.

The unusually situation is not that a millionaire, mother thinks autism is causing her son pain and she decides to end his life and suffering, it is that we don't read about it or talk about it. All to often parents end parental rights or murder because autism can drain hope and reality right out of parents (of course, with the right dose of sleep deprivation). The one-time, quick-fix autism cures don't work and lead parents and grandparents down a path of despair when their child doesn't get 'better'.

Add the lack of federal funding for respite care and proven, effective interventions and parents can find themselves spiriting down the road of giving-up their child to the state or even murder. I am not condoning what these two women did or others who act similarly, but we are not giving parents practical resources to help develop a everyday that the whole family can live with.

Foremost parents need to value their own physical and mental health and know the warning signs that life is getting desperate and help is needed. Then where to go and how-to get help. Friends and family members also need to evaluate the health of primary care providers (mom and dad) to ensure everyone is getting the respite they need.

Growing a child with autism into a happy, productive adult takes many layers of family members, professionals, educators, and care providers over the lifespan of the individual.

Survival

I am back! After four months of healing from falling fourteen feet off a ladder and fracturing two vertebra and shattering my heel, I am beginning to reshape my life and getting back to writing on the Parenting Autism blog. My first professional step forward... many other steps taken (literally), with help of physical therapist, I am learning to re-walk.

While laying on the couch (my bed for eight weeks since I could not climb the stairs) my parenting plan of organic, whole foods and after-school activities like swimming, Lego club, art class, gymnastics, and karate exploded into hours of watching movies and eating cereal and toast for breakfast, lunch, and dinner. Our after school plan was simply:

1. Roll my walker with one foot while sitting on the bench, that clearly states "Warning DO NOT attempt to sit on seat while moving", from couch to front door.
2. Get coat on and open door.
3. Roll walker out on the front porch and sit in the frigged, Vermont Fall.
4. SMILE!
5. Wave at kids and moms that are helping Tristan and Dylan off the bus.
6. Kiss Tristan and Dylan.
7. Inquire about their school day; trying to pry-out more than what they ate for lunch.
8. Open door and roll back into our house while reminding the boys to pick-up their backpacks, coats, and shoes off the floor, so I can get back into the house.
9. Sit at the door, yelling, "I can't get through with your stuff all over the floor."
10. Roll through the living room dodging any dropped toys, books, food, and collapse on the couch.

The above mission would take me about forty-five minutes to execute. After an afternoon nap I would lift my head long enough to help Tristan and Dylan with homework-- no executive functioning plans on how we would set-up our afternoon, straight and simply-- survival.

At first, the voice inside my head screamed that I was ruining my children-- Tristan would slip into his old patterns of reciting entire movies and only eating Veggie Bootie and pepperoni, Dylan would not learn to read by the end of kindergarten, and Liam since he was only two (almost three) would turn into a swearing, punching, kicking preschooler with the corruption of Stars Wars and Harry Potter.

Well, I can report four months later that Tristan, Dylan, and Liam did not spiral down into children that were feared by me and every other person. Instead, Tristan learned how to put the dogs "away" in their crates (so, not to eat their food) and how-to pour cereal and milk into bowls. They all learned to put away their clothes, dress, bathe, and brush teeth independently. Liam learned to sleep next to me instead of with me.

And I learned more in the last four months about life than in my prior thirty-five years and I hope to scribble some of those thoughts to you.

Last Thought:

Pause your life, right now. Take a deep breath into your soul. Thank yourself for all you have done and inquired. Be grateful that air can pass through your lungs and that you have this moment. Namaste.

Read This...

I recently broke two vertebra and shattered my heel, now I am recovering and writing about that process at http://brokenmommy.blogspot.com/

Please come and enjoy the journey. Thanks, Angela

Help Us Build a Better Program

I have been hearing a lot of frustration and pain out there over school related issues. Some of the stories told to me by parents have sucked the energy right out of the parents leaving a shell; not a great place to parent from. It seems to us at Parenting Autism, school related issues tend to be a huge obstacle to getting on with your life; they drain time, energy, and resources.

So, how can you move forward when all the players (the school) are not willing to help get there. The portion of our Build Your Family workshop that focuses on developing an Inclusive Team of Professionals has been so popular we are expanding it. So, we need your help to make it better, please take two minutes (really that is it) and fill-out this survey

Pass this link on to your friends, co-workers, neighbors, and family who have children on an IEP (the child does not have to be diagnosed with autism). The more data we collect the more information we have to help shape a new program for parents and educators.

Will You Be My Friend?

As all kids on the autism spectrum, Tristan has a difficult time with social skills. Often Tristan’s words fail him or he has a hard time retrieving the words fast enough to react to his classmates. When there is break down in communication Tristan sometimes (not always) gets frustrated and puts his hands on the other kids face. Quickly, he is able to regain himself and apologize and move on (often without teacher redirection).

Last year this scenario happened daily or even several times a day until we (home and school) used video modeling. We used video modeling to instruct Tristan how to stand in line without touching the other kids. First, Tristan was video taped in line touching the other children (not the desired behavior). Then the other kids lined-up slowly, one at a time, placing their arms down, and hands by their sides (desired behavior).

Tristan watched the video at home and within weeks the behavior switched from undesired to desired behavior. Since, we have used video modeling to help Tristan understand social situations like how to negotiate when he wants a toy that another child has. We have even used video modeling to teach Tristan the ABCs. Letters held no importance to Tristan until we placed them with a person or object that had meaning for him, like M for mommy (picture of me).

I think it is time to revive video modeling to teach Tristan some complex social situations like creating friendships. Often Tristan will suggest a play scenario like let’s build with Legos and his friend says no let’s play soccer and Tristan says “no, I don’t like soccer”, then he walks away. Instead of Tristan saying:

“How about playing Star Wars?”
or
“Ok, soccer now, Legos later.”

Tristan’s IEP goals and our parenting goals reflect social development; however sometimes they can become overshadowed by academic objectives like learning to read. I find myself reminding his school team that Tristan will be a successful read and writer, but right now, his peers are willing to practice social skills with him and as they grow older they will probably lose interest.

Tristan will need more time decode and navigate the social scene, so giving him as much time now when he and his peers are young to practice will help not only Tristan, but probably the entire class.

The Circle of Crisis

I talk about the “circle of crisis” in my workshops or here on my blog, but I have not actually sat-down and explained the term. I see the circle of crisis as when a person, a family, an organization, or even a company can’t move forward — even the most simple task as calling a doctor becomes to overwhelming. You are consumed with either the anxiety of the future (how will my child survive without me as an adult) or too focused on the past (what-if my child had more intervention when my child was three) to work in the present.

Emotions get tied around the task at the present moment and become too difficult or too overwhelming to accomplish and the circle of crisis keeps revolving. Often times the task whether it is revising IEP goals for your next meeting or calling about a hearing test takes much less time than we think, if can step-out of the circle of crisis and into a peaceful state that lives in the present.

By jumping off the train of crisis you can deal in the moment and leave the future what-ifs to the future. Some strategies I discuss in my workbook and workshops are writing down steps to the task you wish to accomplish and taking the emotion out of the task-at-hand. Whether you feel sad, happy, guilty, mad, or frustrated, deal with the feeling by acknowledging how you feel and allow yourself to get back to a state of peace. Take a walk, call a friend, sit quietly— whatever it takes to get YOU back then tackle the task.

Live Now

Do you live right, now? I mean— are you present in the moment of now? Present in what is happening at the present — not the future or the past — but the now. Yes, it is a difficult task to not project forward to potential prospects or not dwell on what has occurred in your history. Take a moment — look around — what are you missing? Your children dancing around the living room to the latest tunes from your IPod or your spouse glancing at you with loving eyes or a phone call from a long-lost friend, what is more important — what you need to do to get to the next thing, event, or item on calendar or the now?

I challenged myself to living in the present; to take every opportunity that happens in the moment. The other night I snuggled on the top bunk with Tristan as we looked through one of our Waldo books I thought nothing of the piled-up dishes in the sink or laundry to add to the washer, I stayed focused on finding Waldo and guess what? We had a blast, not only did Tristan and I have fun, but we connected. Tristan knew all my energy and thoughts were on him and the activity, not on the steps of the evening or tomorrow’s phone calls.

Who knows what tomorrow will bring maybe you will win a million dollars or get hit by a car so spending all your reserves on the future or the past robs you of the present. After Tristan was diagnosed with autism I spent hours and perhaps even days at a time, researching and analyzing how Tristan could have gotten autism. I remember sitting in my warm car looking out at the children playing on the beach while Tristan and Dylan sat strapped into their car seats, so I could take a call from a pharmaceutical representative about a vaccine Tristan received two years earlier. Instead I could have been at the beach playing in the sand with my kids and living because whatever was said on the phone did not matter. What happened two years earlier did not help me or Tristan then or even now.

So, go live for the present. Challenge yourself to live an hour or a day or even a week in the now. See what the results are if you shed the baggage of the past and stop analyzing the future. Perhaps you will find what I have found — PEACE.

Was Liam Switched at Birth?

This kid is not mine! I know he looks just like me with his round, blue eyes and fair skin, but he talks. No just two year old babbling, Liam communicates! Even with gestures like finger waving when his brothers have bop him over the head and long sentences about friends at school and what he wants for dinner.

Other people even understand him; I don’t have to interrupt every single word that comes out of his mouth. I have been repeating word for word what Tristan (son #1) and Dylan (son #2) have said for the last six years... now I just stand next Liam as he belts out 1,2,3,4,5,6,7,8,9, and 10 and everyone understands him.

Tristan (son #1) has autism and Dylan (son #2) has a speech delay, so getting a kid that was meeting all the developmental milestones was highly unlikely with our gene pool. Oddly enough Liam is text book two year old (over the past seven years I have memorized all the “expert” parenting books), huh… I don’t understand how this happened.

So this is what it is like when your kid is “typical”, you play and talk about school and friends and what to make for dinner. You mean I don’t have to guess what you want for dinner or what clothes you want to wear or try to understand why you are crying. This is a strange world to me— no picture boards are needed and Liam tells me what he wants, no guessing.

Last weekend I dragged out the seven year old flash cards that I bought for Tristan (before diagnosis) because that was what “good” parents do, right?...quiz your eighteen month old about what they see on the card. Well, I have had years of failed attempts which ended ninety percent of the time with Tristan or Dylan eating the flash cards.

So, the flash card have been on the shelf with all the craft supplies (another lost cause) and I thought why not, Liam is clearly beyond eating them so why not try to expand his mind. Guess what? Liam loved them and carried them around saying what was on the card. For years I had listened to my friends discuss the development of their children and Tristan and Dylan never fit their descriptions.

It also seemed like my friends (no offense) would worry about the smallest things like whether or not to give their precious two year old Tylenol when they were teething or what kind of bathing products to use. But I guess when you are not anxious that your two or even three year old has no functioning communication those are the things to fret over.

This parenting thing is easy (I mean for the typically developing kiddos)— no speech language pathologists, occupational therapists, play therapists, special educators, and psychologists daily, tramping through my house. I say a new word and Liam repeats it and seems to understand it. Wow, this is like having a first born child again… I mean totally different from the last two. I wonder, am I qualified to raise a child with no developmental delay? Well, I guess we will find out; what a great adventure I am on.

Free Yourself

"1, 2, 3, 4, 5" Liam counts and then jumps from the dining room table into my arms.


"Mama, more please?" shouts Liam.

"OK, one more time, then no more jump." I say with my best "I mean business" look.


Most use their dining room table to lay out their best linens and grandma's china and of course practicing eating without drooling, but not us. We do sit and eat every meal at our dark, wooden, eight seater, but through out the day the boys could be standing side-by-side on the table performing the song "open shut them" or sliding to the tunes over the radio.


We do have rules and expectations for our children like no feet on the table while we are eating and everyone cleans their own dishes, but Peter and I have own guidelines to the stuff in our home:

1. We never buy anything that is not well produced and sturdy.
2. All the upholstered furniture can be machine washed or covers can be reasonably replaced.
3. We don't purchase furniture that we will cause a "great depression" (emotionally or financially) if damaged. We are saving our artisan crafted furniture buying for when our children have their own off-spring.
4. Finally, it has to look good! No frumpy, saggy hand-me-down furniture (when I was pregnant for the last time with Liam I drove all our furniture to the Salvation Army... more about this later).

I don't spend much time yelling at our three,"monkeys" about jumping on the couch or building a fort with the sofa pillows. Instead I can spend time encouraging their bonding and exploration while I get to sit back and check my email or Facebook page without feeling like I have to monitor the boys' every move.

Begin with a Smile

Last week I was driving along the zig-zag roads that climb and descend the Green Mountains to a Build Your Family workshop that I was giving to a bunch of parents. During the drive I replay my six hour workshop in my head, sometimes quizzing myself about the sections and going through the possible questions I would be asked. I do all this to squash the fear that someone may fall asleep as I explain the need to come to an understanding of your own fears, anxiety, and sometimes even depression before you can truly move forward to preparing your child for adulthood.

After each workshop I give, I call Peter to report how many sleepers I had. To my credit I have only had one attendee fall asleep and that was a medical student during a lecture about autism. At this workshop the conversation turned hot when discussing IEP meetings and the attendees scribed pages of notes. So, I thought this would be a great topic for a newsletter.

I been to many workshops about special education law and the IEP process which I think are all valuable resources and information every parent with a child with special needs must become educated in. However, what I teach during my Build Your Family workshop revolves around behavior— your behavior and the school’s behavior. As a parent you have to know the special education laws to advocate for your child, but how you advocate can change the outcome.

First thing, the only person you can change is YOURSELF. You are going to be in a losing battle if try to change other people. However, you can change how you react to people.

When talking to folks about setting-up an IEP or team meeting, people will tell me, “Well, I have my folder on special education law and I know my child’s needs.” And I will say, “Ok, so what is the first thing you do when you walk in the room?” I always get the look, like “this lady is crazy.” How you walk into the room sets the stage for the entire meeting.

So, next time you have an IEP or team meeting, try my beginning meeting strategies:

• Get there early or at least on time.
• Leave your emotions at the door. Try to separate the emotions from the tasks at hand (I will write more about this later).
• Walk in with a smile on your face and look everyone in the eye as you greet them.
• Sit at the head of the table (you are the meeting facilitator).
• Bring a recorder and place it on the table and turn it on; so you can listen and engage everyone and still have “notes” from the meeting.
• Bring an agenda of the topics to be discussed (email then to the team in advance to have everyone able to participate and bring copies for everyone).
• Begin the meeting by thanking everyone for coming and working with your family.
• Ask everyone to stick to the topics on the agenda so you can finish the meeting on-time.

After the meeting, process how the other team member reacted to you, were they more or less responsive through out the meeting? Did you work toward bettering your child’s educational experience? Was there less or more struggle? Did you feel accomplished and heard?

Next week I will discuss other ways that behavior can dictate your IEP or team meetings.

Back on Track

Sorry I have neglected you again. I can make excuses, or show you my filled calendar, or plead for your forgiveness, but I think I won’t. You all know how it is when your household revolves around all your commitments and then at night when I should sit down at the computer and tell you about my latest adventure, I fall asleep! Right there in bed with a kid and a pile of allergy infested dust-mite collectors (Dylan’s loveys Snowy 1, 2, and 3), my only alone time taken by sleep.

Well here we are mid-February and currently no one in our house is sick, but that could change at any moment and by tonight we will all be praying to the porcelain throne. Since we veered into the realm of viruses I will add my tips to surviving a sick household.

• When you are healthy cook some chicken or turkey soup to freeze for the moments when your family has been kidnapped by germs (see recipe below).


• Buy an additional waterproof pad for the bed (not fitted). It looks like a waterproof top sheet that you can throw down on top of the bottom sheet. I find it especially helpful when I have already changed the sheets once and I don’t want to change them again. If you are lucky the vomit will stay right on the waterproof sheet and underneath is a clean, dry sheet.


• Keep a bottle of white vinegar and Borax in the laundry room. I don’t scrub or rinse. I just add a cup of white vinegar and a cup of Borax to the laundry detergent and wash with warm water. It will get out all the smells and stains.


• Stack-up old towels in an easy to access (when kids are vomiting) place, so you are ready for clean-up.


• Store a box of crackers in the pantry for the patients. It saves a trip to the store with sick kids.


• REST because if you don’t you will be the next to be feeling the pain.
  
  Angela’s Chicken Soup Recipe
  
  1 whole chicken
  3 cloves of garlic (chopped)
  6 stalks of celery (chopped)
  5 carrots (sliced)
  3 onions (chopped)
  1 bag frozen corn
  1 pint of mushrooms
  1 teaspoon tarragon
  1 teaspoon celery seed
  1 bay leaf
  Salt and pepper to taste
  1 tablespoon of lemon juice
  1 tablespoon of soy sauce
  
  Directions: Preheat the oven to 450. Place the whole chicken in a roasting pan and massage the chicken with olive oil and salt and pepper. Place the chicken in the oven for 1 hour to 1 ½ hour depending on the size; continue until fully cooked.
  
  Pick all the meat off the chicken and set aside. Place the bones and fat into a large pot and cover with water and ¼ cup of salt. Place on the stove on the highest temperature until it boils. Continue to cook for 2 hours (more if you would like) and add celery ends (leaves too), one carrot, one onion. Cook for another 40 minutes, then strain the broth out into a bowl and set aside. Compost vegetables.
  
  Place the large pot back on the stove on a medium/high temperature add olive oil and sauté 2 onions and 3 garlic cloves until light brown. Then add carrots, celery, mushrooms, and corn and simmer until cooked. Add tarragon, celery seed, bay leaf, salt, and pepper to vegetables and stir. Then add the reserve broth, lemon juice, and soy sauce and simmer until warm. Serve or store in the freezer.

Cast Your Ballot for a Package

The day before the election and all my people (the folks that will admit that they are my friends, colleagues, and associates) are not breathing, they are panting with anxiety. Perhaps government officials will have to pump Prozac through the water system to just get people out of bed and to the polls and work.

Why are people in such a frenzy? Well, the economy crashed into a deep underwater recession which means job security is under siege and our retirements disappeared along with many people’s homes. Top this off with the balance statement of the war (both lives loss and the dollar amount) and our country finds it self in a downward spiral.

I have read and hear some say that they are going to vote for a candidate because they have talked more about autism and I say don’t vote for one issue, cast your ballot for a package that will in the long-run help your family and your community. As much as all of us in the autism community want more funding for research to find a cure for autism, let’s be realistic whomever gets the Oval Office will not be spending much time or resources on autism until workers are back on the job and home foreclosures reduce (some are families affected by ASD).

The United States needs a leader that will act quickly to restore and strengthen our economy, but also one that will build-up the people including people diagnosed with autism. Talking about funding more autism research is just one piece, what about upholding the federal government agreement to help fund special education or increasing the budget for Head Start programs?

If the federal government coughed-up the money they agreed to pay for special education (about 40% of the bill instead of just under 20%) not only will our children be gaining but our towns in lower educational taxes. Think of all the issues that impact your family from job security to healthcare to education and then mark your ballot.

Remember Barack Obama voted to increase the funding for special education and Head Start (S.Amdt. 2292 to H.R. 3010, Vote 273, 10/26/08; AFT Voting Record for 109th Congress, accessed 7/1/08) and to insure millions of children through the SCHIP program (H.R. 976, Vote 307, 8/2/07; S.Con.Res. 21, Vote 172, 5/17/07) while his opponent John McCain voted against families (S.Amdt. 2254 to H.R. 3010, Vote 272, 10/26/05; S.C.R. 23, Vote 86, 3/25/03; H.R. 2660, Vote 333, 9/9/03; H.R. 1836, Vote 154, 5/22/01).

Spiraling Down

In these unpredictable economic times, I pondered the question, how are families with children with autism paying their bills and providing for their families? I asked families all over the country to email me to telling me their stories of surviving the economic down-turn. In no way is this article a scientific evaluation of family income or lifestyle, just an overview of what is plaguing our country.

According to the 2000 Census report more and more families rely on two incomes to stay in the middle class and what my interviews uncovered was that families with kids on the spectrum often don’t have two full–time incomes due to caring for their child. Before the age of three it is often difficult to find and retain appropriate childcare for children with autism and then after the age of three your child should receive services through your local school system, but usually not enough time for a full-time job. Along with the intensive caring and re-enforcing behavioral therapies, many parents are their child’s case manager — dealing with doctor consults, educational programs, and home therapies which results in many meetings, emails, and phone calls every month.

What I found were that parents often work split shifts, so one person can always be home with the child with autism or be able to manage the doctor’s appointments, therapists, and meetings. The financial and emotional stress can be daunting with families left unsupported. Other families live on one income trying to live from paycheck to paycheck, giving up taking the kids to movies (not to mention a night on the town) for gluten-free, casein-free bread for their child with autism or occupational therapy or medical care, all things these kiddos need to thrive. Parents that make the choice to have one parent stay-home with their child often end-up here not because they want to be a stay-at-home parent, but because there is no other option.

As a result families plunge into financial distress with their relationships following — who can really endure a child with special needs, economic uncertainty, emotional stress, and workplace demands along with maintaining a concrete marriage. The American Autism Society claims that over 80% of the families affected by autism result in divorce. Combined with the stats from the Census report that women are 50% more likely to spiral down into poverty after a divorce, this paints a bleak picture for all families. We need more funding to be allocated towards strengthening autism programs, respite care, and professional training to help the entire family not just the child.

While I read emails from parents, I often think we are, the United States, the richest country in the world, of course we can pay for special education or healthcare for all or job coaching or even appropriate daycare for all children regardless of age and abilities, we chose not to (support these programs). However, I believe we won’t get there without political will and people saying “no, our tax dollars should not be spent to make the rich richer, but help all our citizens.”