Siblings

I am FUN--at least to pre-verbal kids on the Autism Spectrum-- or not.  Not bragging--just confident and have had that confidence shorn up, every time I see the sparkle in a kid's eye when they see me. (Yes--kids with ASD have eyes that "sparkle").

Sometimes, though, I'm TOO fun and that can cause "sibling rivalry" with NT siblings.  The younger ones want to play with me, too.  The older ones are hurt that THEY can't elicit the same response from their sibling.  Actually, some parents have that feeling too.  It is hard to explain to siblings that I have CHOSEN to do this (or have been chosen, as I prefer).  It is a part of me.  They did not CHOOSE to have a sibling with Autism.  This is what I do. Every day.  I have honed my craft and continue to hone it.  Children, and even some adults, don't understand this.  They think that I just come in to play with their sibling and that they don't get that "special treatment".  And, for the most part, when I am playing with a client, I am so focused on the child and "reading" the child, that the siblings get ignored by me.  I think I sometimes appear "mean" to them, because I am so focused on their sibling.  I don't MEAN to ignore the sibling, it just happens as I am trying to concentrate on their sibling.  This is my JOB.  I am getting paid, by their parents, to play with their sib. 

Although I am able, and willing, to train siblings, most siblings are too young to "get it".   It is difficult to explain WHAT I am doing, WHY I am doing it and WHAT I am hoping to see, all while I'm concentrating on the child.  I am a multi-tasker, by nature and PLAYing is a muli-task job--to add verbal explanations makes it harder.  Some families have asked if they could video tape and then I could explain.  I think this is a great idea, as I can focus on the WH? questions.

Sometimes, parents will use the time that I am there to have special time with the other kids in the house. This is probably the best use of their time.  It gives them time with their other children and keeps distractions away from our play.  Sometimes, if the other sibling is at school, the parent(s) will watch and I will try to give them reasons why I am doing something and what I am seeing.  Sometimes, the parent(s) will go do something special for themselves--yoga, massage, etc.  THAT is a great use of their time, while I'm there! :)

Reciprocal Play

One of the things that I've been so excited to see, this year, is Reciprocal Play emerging with a few of "my kids". Reciprocal Play is important in play activities like pillow fights, tag, pool play etc.  ALL of my kids enjoy being tickled, squashed by pillows and chased, to some extent.  But the REAL magic is when THEY want to do those things to ME!


Reciprocal Play requires the ability to give away the 'fun' to someone else, while realizing that it is STILL fun for the giver.  This is REALLY a difficult concept for most kids on the spectrum.  Once they get that THEY still have fun, can explore "the dark side" and their friend has fun, too, it gradually increases.  It is difficult for them to get 'outside' themselves to initiate that type of play, or even return it.

This is a Level 6 skill and usually needs some scaffolding to get attain it.  As kids begin to emerge into level 5 and 6, I introduce sword play (using foam pipe insulators) and encourage my swimming kids to push me into the pool or to splash me.  When parents go on vacation, I encourage them to have pillow fights in the hotel rooms or try to get some splashing games in the pool.  When your child begins to start chasing YOU for fun, you are on your way!

Stimming*

Many parents are not comfortable with some of the things their kids do--like 'stimming'*.  Learning to join in and NOT make it "a big deal", goes a long way with the child.  They feel the respect of their choice.

For example, one of my boys was "stimming" on a piece that spun around.  So I helped him spin it.  Then I sang a song, "round and round and round it goes until it STOPS!"  Then I would stop it.  He would look at me and we would start again.  When I stopped it, again, I would say (when he looked at me) , "OHHH...you want to see it SPIN!"  Because he has SOME language, I would ask him to say "spin".  If he didn't, but was still looking at me and gesturing for me to spin, I would spin it.  (Different from ABA--they would not spin it until he attempted the verbalization).  I would spin it fast, saying "It is going FAST!" and the slow it down, "It is going slow".  Eventually I would ask, "Do you want it to spin FAST or SLOW?"--again trying for language, but not demanding it.  (With older kids who are non-verbal, I will sometimes use my hands for them to 'choose"--i.e. put out right hand and say "FAST" and the left hand and say "SLOW".  Whichever they choose, I  honor the choice.)  Again, by joining in on a stim, it will eventually fade, NOT get worse (which is what parents fear).  By forbidding the stim, anxiety is fostered and the stim becomes more important to the child and will last longer.  Stimming is a way for the child to "veg out" and many parents are too afraid that if they allow it, they will 'veg out' forever. Not true.  I can always tell when a certain behavior is not permitted by parents because the child will be so surprised and relieved when I join in.  Almost always a guarantee for some level of eye contact. It is usually a sideways glances like, "REALLY?  You're letting me do this and YOU'RE doing it TOO??"  They are always "ready" for me to take it away--like I'm pulling a cruel joke on them.  Once they realize I am there for THEM, it is the first step to building a solid relationship.  After that, it is easy.  I do not do a lot of correcting or anything else that "puts upon" the child until I feel I do have that solid relationship.  Once that relationship is built, I can push for language, socialization skills, and behavior changes (although many of these come naturally, once the relationship is built and the parents are "on board".)

So, join in on that stim that you hate so much.  Change it up a little.  Show your child what ELSE can be done with that same thing.  The trust you will build is worth it.

*Stimming:  using an object to retreat from "our world"--usually involves repetitive behavior.  Some examples: spinning something (or anything) over and over, just going through books without even looking at the pictures, repeating the same words over and over, playing a part of a video over and over, lining things up, over and over again.  The commonality? "over and over again".

Parenthood--the TV show

I have started watching the new TV show, "Parenthood".  (Go to NBC.com to watch any episodes you may have missed).  In it, a family gets a diagnosis of Asperger's for their 3rd grader.  When they meet with the psychologist, they are told to "meet him where he is".  At the end of the show, the dad is shown "joining in" with the child, in pirate play.  I LOVED it!!   No ABA drilling.  Just relationship building.

The next episode has a therapist come to the house.  She is able to get the child to join in with other kids.  The mom is sad and a bit jealous that this newcomer could do this, so quickly, after she had been trying for years. (Granted, this IS TV--but it did a good job of showing a family with a child on the Spectrum)  The older sister explains to her dad that it has been "about" her younger brother since as far back as she can remember.  It totally caught the dad off guard, hearing this.

Before I meet with parents, I have learned to explain that I may be able to engage their child better than they can, because this is what I signed up for.  THEY did not.  My job is to teach them how to do what I do.  I do this 5-6 days a week for at least 4 hours a day and LOVE it. If there are typical siblings, I will eventually try to engage them in activities, but usually wait until the child is at least a solid "level 4". (See below for Greenspan's levels.)

DIR Model means = Developmental, Individual Difference, Relationship-based approach. There are six developmental levels. These stages are:

1. Self-regulation and interest in the world (3+ months)

2. Forming relationships, attachment and engagement (intimacy) (5+ months)

3. Two-Way Communication (9+ months)

4. Complex Communication (12-18+ months)

5. Emotional Ideas (24-30+ months)

6. Emotional Thinking (34+ months)

Some kids can be "swiss-cheesy" and have parts of every level, but missing aspects of every level.  Some kids (usually the verbal ones) have more solid level 4-6, but lots of "holes" in the lower levels.  The goal is to close the holes in the lower levels, which makes it easier to transition to higher levels.  My specialty is the lower levels.

Recently, I started working with my first client who is pretty well rounded in all levels.  That has been interesting for me, as I am not used to kids who can do the things she can do.  She was able to initiate "duck duck goose" with the whole family.  She actually came to look for me in "hide and seek" and hid FROM me, too (although she hid where I hid previously).   She still has holes, but they are small--trouble with pronouns, trouble with empathy, some socialization issues, but those are getting less.  I can't wait until she goes to "regular" Kindergarten!

The Power of Nothing

Lifted this from Penny at  http://notnewtoautism.blogspot.com/   Thanks, Penny!

 

When I meet with families, I will tell them that sometimes, it LOOKS like I'm doing "nothing".  This explains why better than anything I can tell them.

 

 

The Power of NOTHING by Dr James D MacDonald

THE POWER OF NOTHING

Nothing works!
We hear this frequently from parents and professionals .
“No matter what I do, my child won’t:
play with me --- respond or initiate --- imitate actions or sounds
do anything new or creative ---- make different sounds
talk with me---stop irritating me --- behave well --- show me what he knows.


After many years of careful observing, we find that adults frequently
Make the decisions without seeing what the child wants.:
Do not give the child enough time to interact.
Do things for the child that he can do himself.
Do not give the child enough time to respond.
Do much more than the child without waiting.
Do not learn what the child can and wants to do.
Interrupt and talk for the child.
Try to get the child to respond in specific ways.


In our work with hundreds of families , we find that
Nothing often does work
We find that the less an adult does the more a child will do.
When we define Nothing as silence, waiting, giving the child time
and simply observing the child carefully,
Then we find that Nothing really works to---
Help the child interact more
Encourage him to both initiate and respond more.
Give him time to prepare a response.
Allow the child to be creative.
Make him more spontaneous.
Show you are interested in what he can do.
Allow him freedom to be himself.
Help you be a real partner
How can you make nothing work for you?
Wait silently for the child to start an interaction
Respond briefly, then wait again.
Wait with a look of anticipation .
Do one thing then wait for your child to take a turn.
Play in a back and forth way, each doing about the same amount -.
Wait when you think he can do more.
Discover that the more you wait, the more he surprises you with what he knows.
The more you wait , the more you learn what really motivates the child.
Consequently, doing “nothing” helps you know your child more.
Play sometimes without talking unless he does.
Learn that he needs time to figure out what to do.
Expect and enjoy the surprises you get as you wait.
Realize that you do not have to do it all; he needs to do half.
Realize that your child learns by doing, so give him time to do.
Learn that his own response will tell you more about him than responding to what you want.

Copyright James D. Mac Donald 2010

IEP Checklist

 I found this on one of my linkedin.com groups and thought it was a useful piece of information, especially for those who have younger children. It was posted by Jeff Gottlieb, an education attorney in CA.   For you "old hats", please let me know if there is anything else that you would recommend and I will add that.

IEP MEETING CHECKLIST (please feel free to share with parents of special education children)

An Individualized Education Program (IEP), is a written document that's developed for each special education eligible child. The IEP is reviewed at least once a year by an IEP team; an IEP team typically consisting of parents, teachers, school administrators and others who have information pertinent to the special education eligible child. The IEP can be viewed as a contract between the child (child’s parents) and the school district regarding an appropriate placement and scope of educational services for the child. Accordingly, it is critical that the IEP meet the highest standards of what the school district should offer the child. As a tool to help parents receive the best IEP, the following is a general check list to be used by a parent in preparation for an IEP meeting. The list is basic and is not intended to be exhaustive. Legal advice may be required for specific circumstances.

• Confirm with the school district the meeting day and time of the IEP, a date and time that is agreeable to you and anyone you want to attend the IEP meeting.

• Provide the school district with written notice, via mail and fax, that you will be taping the IEP meeting.

• Request in writing, a copy of your child’s entire educational file (everything!)

• Request in writing that you be provided with all new assessments, prior to the IEP meeting.

• Attempt to make an appointment to observe your child in his/her classrooms, sometime prior to the IEP meeting.

• Review all IEPs, all assessments (past and current); identify comments within the previous IEPs. Summarize test scores and trends that support any requests that you make on behalf of your child.

• Make a written list of your concerns.

• Write down your child’s strengths.

• Know what you want in terms of placement, services and goals and why you want each item and what objective and subjective data/information supports what you want (put all of this in writing as part of your own confidential notes). Know your bottom line.

• Be organized. Have copies of all pertinent documents in a binder.

• During the IEP meeting, maintain a positive and “controlling” attitude. Take a leadership role in the IEP meeting.

• If during the IEP meeting, someone states something supporting changing the IEP in your child’s favor, concisely repeat what was stated and request that the other person’s statement be reflected in the IEP notes.

• If someone makes a statement during the IEP meeting that you do not understand (e.g., is confusing); ask for clarity.

• Ask questions during the IEP meeting (for example, how many times did you observe my child and for how long).

• If during the IEP meeting, someone states something different from you want stated, then politely acknowledge the “opposing” statement and state your disagreement and why you disagree.

• Discuss how much progress has been made on goals from the last IEP, which goals will need to be continued, and which will need to be modified. Ask for specific examples of how progress has been measured on the current IEP.

• Review the IEP before leaving the IEP meeting, making certain that key concerns and statements have been reflected in the IEP notes.

• Remember the school district is generally only responsible for what’s written in the IEP, so make sure it says what is agreed to and get a copy before you leave.

• Generally, do not sign the IEP until you have had time to review it at home (treat the IEP as if it is a binding contract).

• Remember, the power to say No! You can disagree as to all educational offerings within an IEP or agree in part and disagree in part. With very few exceptions (e.g., by a court order), a school district cannot unilaterally change your child’s current educational program without your consent. However, at this point of a disagreement with a school district you may want to seek legal counsel.

The things illness can bring out

I've had three kids on my caseload have strep in the past month!  I have no sore throat, but still wonder if I could be a "carrier", without having symptoms.  Two of them do not present in the typical way, when they get strep.  No sore throat, good appetite.  But there are behavioral differences.  One of my girls just got stuck on wanting "screen time", which "we" don't do.  The other was becoming a little stuck on her comfort zone item, but at the same time doing some "new" things--like WANTING to paint.  This is a girl that has had no use for artsy-craftsy things and, in the 2 years I've worked with her, she has never initiated anything like that.  I have a "rainbow paint set" in my basket of "things" and she pulled that out, two weeks in a row and we painted!  Now that her strep has been diagnosed and treated, I wonder if she will want to paint anymore.  Was it the strep or is she growing into other interests?  I can't wait to find out.

Exciting New Communication Device!

If you have an apraxic child, this just might be the ticket!  A Speech Therapist brought this to my attention and I think it looks GREAT. Nearly EVERY kid has a Nintendo DS, so they fit right in with other kids, instead of lugging around a Dynavox/Dynamite.   It is portable, and socially appropriate.  You can add a "regular" voice instead of a robot.  It is just $100 a year (if you already have the DS) and has a 30 day trial period. 

http://taptotalk.com/

Now, I DO understand that some people want speech at any cost.  But COMMUNICATION is more important.  This allows the child to COMMUNICATE, so EVERYONE can understand, not just those close to him/her.  Speech can be worked on, in conjunction with this, but apraxia is much harder to fix than dsypraxia.  Most people with apraxia will never have even, graceful speech.  They may be able to label things, but carrying on a verbal conversation is nearly impossible.  Using a communication device, that is user friendly, is a step to beginning conversations.  Check out Carly Fleischmann.  She has conversations through her typing.

The speechie has a client who has ordered this and will let me know how they like it.  I'll keep you posted.

Scripting

Scripting is a term we use for when children will use certain phrases or even whole episodes of "Dora", "Thomas" etc., as their speech.  Children who have been through some interventions will sound more robotic and "rehearsed".   Many times, once you get past the "formalities", they will have more difficulty keeping with the conversation.

Let's face it...we ALL script to some extent: 

"Thank you. "  "You're welcome." 

" How are you?"  "Great, thanks!"

Scripting is part of a social skill that we all are forced to learn.  As long as the child's scripts "make sense" to the conversation, don't correct or be concerned.  

One way that I've seen to help reduce scripting is to join in with it.  If a child is scripting a TV show,  join in with the script.  Then, slowly change it up in a silly way--using the child's name is usually very successful.  If you don't fight it, but join it, many times, it will devolve and will only return in high anxiety situations.
 
I have one girl who LOVED scripting anything with a 'dot.com' after it.  Obviously, this does not usually make sense it any conversation.  So we began making silly dot coms, like her name or dog's name and adding dot org and dot net.  Soon, she was asking for the "dot com game".  The rules I had were :

1.)  SHE had to start 
2.)  we couldn't use each other's ideas
3.)   and NO repetition.

Soon, she eliminated this form of scripting.  OCCASIONALLY, she will ask to play the game, but it never lasts too long.  

IF after trying to join in, etc. doesn't eliminate the scripting, it is best to treat it as you would masturbation.  They can do it in the privacy of their room, but not in other areas.  So, if they begin to script, you say, "Okay, honey--you need to go to your room if you want to script/talk about that". 


 

More PLAY tips

1.)    WAIT...ALWAYS WAIT (can't be said enough times)

2.)    Go for AFFECT. (Whatever will make child smile, light up, pay attention)

3.)    Make sure 'circles' are towards PEOPLE, not THINGS.

4.)    Ask yourself, "Is this fun for ____?"  If not, stop and join.

5.)    Label actions, words, and feelings.

6.)    Express your affect as SYMPATHY, not control, when they want to do something you don't want to do or is not allowed.  ("Oh--you REALLY wanted to go in there!  I'm sorry that we can't.  Not today.  Maybe another time.  I know it makes you sad and I'm sad too.  Let's try _______ [something to redirect])

7.)    Figure out 10 things that can be done with a comfort zone object and try doing them. (Think prepositions:  up, down, in, out, over, around etc.)

8.)    Don't be afraid of the "Dark Side" play--especially for higher level children.

9.)    Try to make sure CHILD is opening first circle...wait and make child take responsibility for the relationships.  Remember that a circle can start with just a look, gesture or word.

10.)   Share child's problem in play.  "It's hard to know what to do.  Hmmm...what could we do with the train?"  AND WAIT.  

Huge Successes in Small Moments

Recently, a 15 year old that I've been working with for about 3 years had an amazing breakthrough.  He is a highly anxious kid, non-verbal, and tended to resort to self-aggression or aggression towards others (pulling hair, clothing, pushing etc.) when in a situation that caused him anxiety.

An example:  Three years ago, he had to be pulled out of a restaurant by his dad, screaming, because a piece of his food fell on the floor and dad didn't want him to eat it.  Taking him out in public was very hard and usually had the parents on edge.

A few weeks ago, we were at a restaurant.  He ordered Lemonade on his communication device (CD).  (Even though I suspected he really didn't WANT lemonade and wanted coke, I wanted to respect his choice.)  After eating and barely drinking the lemonade he was clearly waiting for the waitress to bring him a coke.  I asked him what he wanted (via CD) and he pressed Coke.  I told him that he ordered Lemonade and that when he orders something, he has to  go with it--he didn't have money to get another drink.  I KNEW that this was risky, because he could've had a full meltdown and the place was packed.

He stood by our seat while I went to pay and I kept an eye on him, praying he would continue to be calm.  When I finished paying, I gave him his coat.  He hung it back up.  I gave it to him again.  He hung it back up.  I explained that it was time to go and that we could get Coke at home.  He put on his coat and took a few minutes to get out of the door.  All during this time he was quiet (normally there would've been SOME vocalizations.)  

Once we got out the door, I breathed in a HUGE sigh of relief and told him that I was SO proud of him and gave him a high five and a hug.  As we walked towards my car, he would stop and look back at the restaurant as if deciding whether he was going to go back in and get a coke.  I kept telling him how mature he was and how proud I was of him.  He got to the car and got strapped in and realized what he had done and he became proud of himself.  He was so excited and proud. It was a HUGE moment.  I got very teary-eyed when recounting it to his parents because very few other people would understand what a GREAT success that was.

Interesting article on Vaccines

http://www.ageofautism.com/2010/01/vaccination-black-and-white.html

Happy New Year!

Well, we are only 6 days into 2010, but it has been uplfiting, so far.
 
My newest client ( a 4 1/2 year old girl) is doing VERY well.  I've PLAYed with her for less than 10 hours and her mom reported that not only has SHE seen an improvement, but the extended family has even noticed a difference.

 Yesterday, I received a voice mail from the father of a former client (we worked together for a little over a year.  I haven't seen her in 6-7 months) to thank me for helping them apply for the Children's Waiver.  They qualified and are now getting many services that they couldn't have afforded (or even known about), beforehand.  It was such a pleasing surprise to get that acknowledgment.

My morning boy (just turned 2) is doing so well--he is imitating sounds now and just greets me with a big smile and a hug. I saw him later on, when I was taking another client (age 11) to PT at the same place his brother was getting speech. 

I had 4 clients yesterday, with a total of 7 hours PLAYing.  I thought I would be totatlly exhausted when I got home (especially since last client lives 45 minutes from me), but I was wide awake and ready to roll.  

Today I am subbing in a general ed high school classroom.  I forgot how boring it can be.  At least I have another kid after school for 4 hours.  That will bring my energy level up.


Happy New Year!

A wonderful essay

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

Static vox

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! :)