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.