A wonderful essay

 Check out this essay, "My Children Want You to Know".

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The Camps

I believe a whole new, eclectic field of autism treatment/intervention is due.  There are too many "camps"  that are in opposition to each other: Bio-medical vs. Behavioral, Behavioral vs. Play/Floortime, Vaccines vs.Genetics,etc.  Each "camp" believes they have the best intervention or information.  Sometimes, they believe it is the ONLY  "true" intervention. (Sounds like religion, doesn't it?).

The therapists, who are open-minded enough to listen and learn from other disciplines, will be of the most help to their clients.  The parents, who are open minded enough to learn from other parents, will be of the most help to their children.  The communication between parents and therapists is vital.  The communication between therapist and the child, even more so. 

"But my child/client doesn't TALK, " I hear you say, exasperated. That may be true, but I GUARANTEE you that the child DOES communicate.  Tapping into the child's mode of communication is vital for both the parent and the therapist.  Why do we see aggression in many non-verbal kids?  Because NOBODY has bothered to learn their mode of communication!    Success with a child will be fast and furious when they are with someone who "understands" them and communicates that understanding, back to them.

Up until this year, I was a pretty solid member of the "genetics triggered by vaccine camp"--our 22 year old niece exhibited a regression after her vaccines.  Nearly every child I came across, in the past 10 years had a similar story.  Then, this year, I started working with triplets--not ONE of whom have had a vaccination--EVER!  They were preemies and the parents, having medical backgrounds, refused to permit it.  Two of the three are definitely on the Spectrum.  So--if it wasn't vaccines, what was it?   

People who don't believe in a genetic aspect, are not researching genetics.  Just because you don't have any relatives with ASD, doesn't mean you don't carry the gene. Are there any "quirky" relatives in your family?  Anybody with ADHD, Obsessive Compulsive Disorder, Tourette's?   Autism genetics is much like alcoholism:  If you have the alcoholism gene, but don't drink alcohol, you will never have alcoholism.  We know alcohol is the trigger for that gene.  What we DON'T know, is WHAT is the trigger for ASD?  I now believe vaccines can be A trigger, but are not THE trigger.  I also believe that the parents of the ASD kids, being the first "fast food" generation may have a gene that got changed, due to diet and environment.  [A great show to watch, regarding this is "The Ghost in Your Genes" on PBS (usually during pledge week).]  What our parents ate or didn't eat, could have affected our genes. Nearly all Americans, under 40, always had a microwave in the house, had a regular diet of artificial sweeteners, and ate more processed food than any generation before them.  Could these things have altered their genes, just enough, to afflict their children?  These are questions that need to be answered, but not assumed, and not argued to the point of dismissal.  We just don't know.  Yes, you know for YOUR child--but what about all the others out there?  And why more boys than girls?  Is testosterone the issue?  Then why girls, at all? 

I believe, in the next 10 years, they will conclusively know what  most of the causes of autism are and how to treat them.  And I think they will find a link to Bipolar Disorder and some other "quirky" things we see in people.

If I had it to do all over again, my 19 year old would have had a LOT less vaccines.  I found one of his vaccination charts (his 5 yr. shots for Kindergartedn) and he got 7 (SEVEN) vaccines at one time!  That can't be good for anybody, much less a 5 year old at the 50% in weight and 25% for height.

Diagnosis: Autism Spectrum Disorder (My advice to parents of the newly diagnosed)

First, allow yourself to grieve.  For you AND your child.  You did not "sign up" for this and neither did your child.  It is NOT your "fault".  Do not search for blame, but for hope and recovery.   Your hopes and dreams for your child will change.  You have a long, arduous, but rewarding journey ahead of you.  Grieve, but prepare for that journey.  EVERY intervention is going to take time,dedication, and probably some funds.  Do not invest in a program that you will not be able to follow through with, personally.  Most interventions will take at least 1-2 years or more, depending on the degree of autism your child has.  There is NO "quick and easy fix".  Anyone who tells you there is, is someone for whom you need to exercise caution.

Do not keep the diagnosis a secret from family and friends.  They will find out sooner or later--it doesn't get better overnight.  The sooner people know, the easier for you.  You will need their support.  Find at least 1 or 2 trusted people whom you can use as a sounding board.  Ask them to fill this role--to play devil's advocate, but to also support you in your decisions regarding your child, even if they don't agree.  YOU know your child best.  Remember that there is no ONE "cure".  Go to an ASD Support group in your area to learn from parents who have been doing this awhile.

ALWAYS do only one intervention/treatment at a time, so you will know what is working and what isn't.Eventually, you will find that adding one thing to another is helpful, but give each therapy a chance to work on its own, so YOU know how to best help your child.

If you feel vaccines had a part in your child's autism, I, personally,would not vaccinate again.  If you choose to vaccinate, find a doctor who will give vaccinations singly, instead of 3 or 4 different vaccinations in one shot. 

Next, I would see if diet has anything to do with your child's autism.  This is the easiest and least expensive intervention/treatment option.   I would first eliminate Gluten.  Do this for 6 weeks.  If you see no dramatic change, (i.e. increased eye contact, more babbling or talking, more initiation, less stimming) introduce it back into the diet.  After two weeks,  eliminate Casein.  Again, if there is no dramatic change after 6 weeks, the diet may not be the culprit. Do not be discouraged--yes there are accounts of kids whose autism gets "cured" (I prefer to say, "put in remission") with diet changes.  (I have only witnessed one child, in my practice, who dramatically improved,(i.e. much more initiation, eye contact, and attempts to communicate, both verbally and gesturally, but was far from "cured".)  If the diet changes do not bring you to where you want to be, I would next implement Floortime.

Obviously, I am a definite proponent of the PLAY (Play and Language for Autistic Youth) Project.  It is inexpensive (i.e 3-4K a year compared to 10-20K for other interventions) and I have seen AMAZING results in young children (under age 7).   I have also seen good results in older children, but they don't happen as quickly as they do in the younger children and the Project does not target older children.  It is an early intervention tool, but the principles of it work for any aged child.   If you cannot find the 20-30 hours a week needed to play, try to train family and friends.  Using a PLAY tutor is also an option, but adds to the cost--although most PLAY tutors are less than $20 an hour.
 
If PLAY does not bring your child to a level that you are satisfied with, you may then want to try ABA--(Applied Behavioral Analysis) or RDI (Relationship Development Intervention).  I believe both of these are more appropriate for children over the age of 7, who have had few years of Floortime.  Both are intense, expensive,(not usually covered by insurance) and "puts upon" the child i.e. not following the child's lead or intentions.  When a child's intentions are ignored, early on, you WILL see behavioral problems.  Remember:  BEHAVIOR=COMMUNICATION.  Once a child is 6 or 7, they can be "put upon" more easily, especially if they have had the Floortime background.  We are seeing more ABA therapists trained in Floortime and that helps, significantly.

Another option is homeopathic remedies.   Find a DAN (Defeat Autism Now) doctor in your area or an M.D./D.O., who is also a homeopath.  Parents have reported improvement with NAET, biofeedback,acupuncture,chiropractors, sensory integration, and other alternative practices.  However, many of these are not covered by insurance so it is imperative that you find professionals familiar with autism, who have had success that they can document.  There ARE charlatans who will take advantage of your desperation.  This is when you need to use your "sounding board".   I am currently in contact with a NAET practitioner who is treating some children on the Spectrum, for free, and I am interested in seeing how they do--again this is a long term intervention.  I will report back on this when she has had at least a year with them.


Most children on the spectrum will also need occupational and speech therapy.  Some will need physical therapy.  A lot of OT and speech can be incorporated into a PLAY session.  Many of these therapies ARE covered by insurance, depending on your insurance company.

If your child is 2 1/2 or older, they may be eligible for an Early On intervention with your local school district.  This is where they may get some OT, PT or speech, if needed.  In Michigan, we have the Children's Waiver, which allows parents to get respite care of THEIR choice and occasionally other therapies.

Catastrophic Diagnoses: Tips for Friends and Families

Autism is a catastrophic diagnosis.  It is right up there with cancer, heart problems, Muscular Dystrophy, juvenile diabetes, etc.  When parents get the diagnosis of an Autism Spectrum Disorder, they are overwhelmed. The child, for whom they had unlimited dreams and hopes, is gone.  While most parents are equipped to handle a sick child, most are not equipped to to parent a healthy child with a neurological developmental disorder.  And no parent is equipped to lose their child.  Autism steals the child these parents knew.  They will never stop loving the child, but it is akin to a kidnapping--the child you get back is never the same.

Do not minimize the diagnosis by saying things like, "At least it isn't life threatening".  For one, you would be wrong--Autism CAN be life threatening.  Children on the Spectrum can be "escape artists" and wander away from home.  They will not pay attention to traffic and many are drawn to water.  Many children on the Spectrum also have severe allergic reactions, seizures, and other health problems.  Secondly, you are not addressing the parents' grief.  They did LOSE THE CHILD THEY HAD!  It does not mean they will never get them back, but acknowledge their loss and their grief.

NEVER say, "If you need anything, let me know" because most people will not take advantage of that offer and it doesn't feel sincere, when it is uttered.  Instead, OFFER to help and learn."Do unto to others as you would have them do unto you".  Think of them as parents of sextuplets--what would you want others to do for you, under those circumstances?  Learn HOW to play with a child on the spectrum.(Read Stanley Greenspan's books on Floortime).  Babysit. Make dinners.  Mow their lawn. Offer to stay overnight, and get up with the child, if he is a poor sleeper.  (Sleep deprivation is a major problem for parents with children on the Spectrum)  Pitch in with friends to get a cleaning lady.  When you go to the grocery store, call and see if there is something you can pick up for them.  Many children on the spectrum require MANY therapies:  speech, occupational and physical.  Offer to watch siblings, while they take that child to their therapies.  Find SibShops in your area and offer to take the siblings of the ASD child to them. Stay in contact, even though they may slip away.  Depression is common in parents of ASD children.  Try to be sensitive to "girls/guys night out" situations.  Many couples have learned to make sure each one gets at least one of these a month, so they can stay connected to others and "get away from the autism" for a few hours.

Because there are SO many treatment and intervention options, be a sounding board for the parents. Parents tend to feel panicked that they only have a "certain window of time" to help their child.  While this is partially true--the brain is much more malleable before age 5, there are still things that can be done, as a child gets older that can help improve skills.   Support them, but also be a "devil's advocate", to help them make the best decision for their child.   ALWAYS support their final decision.  You and your friends will hear of parents who have had EXTREMELY successful treatments and interventions.  However, what works for one child, does not always work for another.  Each child has different symptoms, causes, and personalities.   Because of this, encourage starting with the least expensive (diet changes) and then only ONE change at a time.   (I have seen parents who have implemented the GF/CF diet, hyperbaric chamber, ABA and PLAY all at once and when there was some improvement, they didn't know WHAT was causing it and when there were regressions, they didn't know.  Stick with one plan at a time for at least 6 weeks.)  .  If they choose to change the diet,help them find foods and recipes that their child can eat. 

Autism does contribute to stress in a marriage and, therefore, divorce.  Encourage "date nights" by babysitting.  Encourage counseling.  Encourage spirituality.  95% of parents with special needs children do not attend religious services.  If your church or temple does not have a "special needs"  ministry, try to start one. 

Don't just TELL them you are "there for them"--BE there for them. 

Wardrobe Malfunctions and Functions

Over the past 5 years, I have totally changed my wardrobe.  Working with children on the Spectrum has made buying clothes a very concious decision.

My goal is to look professional, while still being able to get on the floor and move around quickly.  I wear only clothes that can be washed, not dry cleaned.  It is easy to get 'bodily fluids' on clothes. :)   I rarely wear jeans.  Wear pants that you can easily move in--I have even found SOME without elastic waists.  (Meijer's had a great pair and I bought all 3 colors.)   In the warmer weather, I wear gaucho or capri pants.  If it is very hot, the longer "board shorts" work well.  If possible comfortable shoes are a plus, but may not be very fashionable. Keeping a pair of gym shoes in the car will work, just in case.    When I am inside a home, I take my shoes off and put on non-skid slippers.

Shirts without buttons are highly recommended.  Some kids can fixate on buttons or they can get torn off, either accidentally or when a child gets frustrated and lashes out.  I also try to wear shirts that are short sleeved, with no "v" necks.  Lower necklines are easy to pull on, thus being torn or stretched out.   I then wear a jacket over the shirt.  The jacket  usually has pockets where I can keep my cell, kleenex, or any other items I may need and adds to the professional appearance.   After about 15-20 minutes of PLAY, the jacket usually comes off.  If I  leave a PLAY session without my bangs being straightened by sweat, I wonder if I could've done something different.  

Other than the same pearl posts in my ears and my watch, I wear NO jewelry (even my wedding ring) because it either will scratch the kids or, if it is delicate, it gets broken.  I have an inexpensive Timex watch that is about as flat as I could find and has a leather band.  I  also have to be sure to put my glasses away, unless I'm with higher level kids who want to read. 

In  Summer, I keep a bathing suit (with racer back straps, to avoid having the straps pulled down) and towel in my car, as some of my clients have pools and/or lakes, and swimming is a wonderful PLAY activity.  In Winter, I keep boots and ski bibs in my car, in case some of my higher level kids want to PLAY outside.  I try to stay inside with kids who have not reached Level 5 or are not very solid in their lower levels (1-3).  It is too easy for them to get distracted, but if there is an activity (such as swimming) that requires them to "be with" me, then I will jump in and have a blast!

Ten Tips for PLAYing with Kids on the Spectrum

1.)  WAIT--Always wait for their intention. 

2.)    Respect them--do not say things about them, in front of them, that you wouldn't say in front of a typical child.  Do not force them to do something before they are ready.  MOST kids with ASD have extremely high anxiety and they need "baby steps" to overcome whatever causes the anxiety (usually transitions), which takes total respect for them and HUGE amounts of patience in yourself.

3.)    Assume that they understand you, even if their receptive language appears low.  Just because they don't do what you ask, doesn't mean they don't UNDERSTAND it.  They just may not "feel" like doing it. 

4.)     FOLLOW THEIR LEAD--even if YOU don't enjoy the activity, do not try to insert your ideas until you are sure they have none of their own.

5.)     Woo and Wait--If they don't appear to have any intentions, introduce something, gently.  See how they tolerate gentle touching, by using your fingers up their arm singing "Itsy Bitsy Spider". Stop, if they "ask"--remember gestures are also communicating, so don't be offended if they push your hand away.  If they are non-verbal, they are asking the only way they can.  If they tolerate/like it, stop and WAIT to see if they ask for you to do it again.  Again, if they are non/pre-verbal, this can come in the form of eye contact, grabbing your hand, a smile.


6.)    Use "Cognitive Dissonance".  For example:  If they are upset because they can't have something, act out their anger and frustration (NOT in a mocking way) and use the words they would use, if they could.  Don't be afraid to lay down on the floor, like they might, and say (in a salient voice), "MOM!  I am SO mad at you!  I want to play with that and you won't let me!"

7.)    Talk FOR the child, especially non/pre-verbal children, but also for verbal children.  If a child gets upset because someone takes his toy, say in a salient voice, "I'm Mad!  I want my toy back!  Give it back!"  Then use your "typical voice" to respond to the child, "You really want that toy back!  Let's see what we can do about that."  
For verbal kids, they need to learn what those feelings are and identify them.  For pre/non-verbal children, they need to hear what they would say if they could talk and they also need the reassurance that they are understood.  Telling them to "not hit" or "settle down" will not get you the results you are looking forward.

8.)    Do not be afraid of silence.  Try NOT to talk or teach, unless you are talking FOR the child.

9.)     JOIN the child in whatever they are doing.  If they are playing with a "Comfort Zone" (CZ)  object, watch what they are doing and narrate what they are doing.  Think what you could do with the item that would be even more fun for them.

10.)    ENJOY the child.  Do not "put conditions"  i.e. trying to 'teach', "if you do this, I'll do this", upon your PLAY time.  Let THEM shine.

Lisa's Blog

My friend, Lisa, has inspired me to start a blog.  She blogs (Pickles and Cheese) and has so many cute ideas. I have NO cute ideas.  I copy everyone else's.

This is all so new to me--I like the idea that I can say more than I can on Facebook, but am afraid it could come back to bite me. So, I wrote my first blog--it is tentative, but on topic and I think I might get a feel for this.

Now if I can just figure out how to make it LOOK better! :)

Playing and Language for Autistic Youth (PLAY Project)-A "God" Thing

When I discovered the PLAY Project, it was a "God" thing.  Our youngest son had recently been diagnosed with a heart condition called "Wolf Parkinson White Syndrome".  Three years earlier, our oldest had died, at 16, from another, more severe heart condition called "Tetralogy of Fallot".  I couldn't believe God would do this to me, again, so I was definitely in denial about the seriousness of it.  Why, God, were we walking back into the Mott Childrens Hospital Cardiac Unit, again?  Once Bobby had died, I was sure I would never step foot in there, again, but here we were.   It was eerie. 

The first ablation did not work (too close to the AV node and they were cauterizing then), so they told us to wait and see.  My denial was evident when I  asked the doctor if this would keep Ethan out of the draft, if Bush instated one. (It would--this was my plan!)   Unfortunately my plan could not be used because, about a year later, Ethan's heart rate went up higher than the ER machines could measure it (over 300 bpm), They had to stop his heart and restart it with a drug. (This was the second time they had done this).  He thought that was cool.  Me?  Not so much.  Luckily, an old high school friend was his nurse in the ER and she, too, had a kid with a heart condition.  So she kept my spirits up and my angst hidden.

So--It was back to Mott and a new doc--the other had taken a job in Atlanta. :(  But they had started freezing instead of burning so if they got too close to the AV node, they could warm it back up.  (With cauterizing, if they hit the node, he'd have a pacemaker the rest of his life)   While Ethan was getting his wiring repaired (yes--he is FULLY recovered), his nurse noticed that I was reading a Temple Grandin book and asked me about my interest in autism.  Her husband was the Executive Director of the PLAY Project.  She told me all about what they did and I was hooked.  She gave me his phone number and name.  It took me 4 months to call.  The deciding factor was listening to "The Secret" on the way to an interview in Lansing.  The question was "When are you most happy and most yourself?  What brings you joy?" I realized, on that drive, that it is when I am working with kids on the Spectrum.  I went through the interview, but told them, at the end, it wasn't really for me.  I went home and called Jim at the PLAY Project and he invited me to a video review.  

Video reviews are only on Wednesday afternoons and you never know who is going to show up, besides Rick Solomon, M.D, the founder of the PLAY Project.  Every person in a video review has to sign a confidentiality agreement.  A video review is when the Home Consultant (HC) goes to a home visit and videotapes the parents playing with the child.  The HC brings the video to the review on Wednesdays and the team then discusses the video and what ideas might be helpful and what things were not working.  Then Dr. Rick tells the parents, via recorder, what he would like them to continue doing and what to do next.  It was EXCITING!  I learned WHY I was so successful with the kids with whom I worked.  It gave me a "structure" to what I'd been doing!  It gave me direction, when I was at a loss with a kid!  I never knew why I did so well with these kids, but being there and being a part of it taught me about ME!  


God got me to this place in a traumatic, roundabout way.  But I am here and I love it.  I just hope he gives me many more years to do it.

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