Why Not?

I mentioned in my last post that I am trying some new interventions with the boys.  Before I tell you about our latest direction I feel the need to clarify my feelings on being an "autism mommy".  There are parents of children with autism that feel that their child's autism is a "gift".  I am not now nor will I ever be one of those parents.  I would never choose to see my boys struggle in the ways that they do.  Yes they have taught me much about life, and yes I am a much stronger person for having been their mommy.  I would never want these things over seeing my children thrive.  So I will continue to try new things- again and again and again.  Some of the benefits may not be evident to others- I am here to tell you that the baby steps matter. 

So on that note...I received a book in the mail from my aunt last week.  I have been continually amazed by the amount of support our family has received, and it has come from unexpected sources as well.  My aunt lives far away, we don't see her very often, and yet she has become one of my biggest cheerleaders in this experience and I was very touched to receive this gift.  The book focuses on Chinese Medicine.  It relates to the same principles applied in interventions such as acupuncture and acupressure.  As you may well know, these techniques have proven effective for many ailments, so much so that they are often covered by insurance. 

The book is about an intervention called Qigong massage- specifically QST or Qigong Sensory Training.  To explain a little further I will give you some brief information from the book:

Chinese medicine in general is based on the electromagnetic field around each person's body, and the circulation from the top of our head down the outside of our body to our hands and our feet and then back up inside the body to our heads again.  In any situation that involves illness or pain, Chinese medicine makes the diagnosis of a block in energy and circulation and the treatment will open up the block and restore circulation.  The theory is that in autism there are many blocks in the energy channels, especially in the areas where the senses open to the world around us.  This prevents the senses from working properly and the child can't receive accurate information about the world around them.  The massage is meant to remove these blocks and fill these channels.  The person giving the massage works from the top of the head to the toes-  to follow the proper flow of energy in the body. 

So this was very intriguing to me.  I took several alternative medicine classes in nursing school including a therapeutic touch class.  It served me well as an oncology nurse- I saw the effects and I believe in them.  I have also used the wilbarger brushing protocol on the boys- which was recommended by their OT and seen the effects of this.  To me, all of this must be interrelated, so I had no problem accepting this theory.  Also, I am inclined to try interventions that "do no harm".  Things like dietary changes, vitamins, etc.  Things with very limited negative effects.  I think massage counts? 

What's the worst that could happen in this situation?  The protocol calls for me to give each child the massage daily for 5 months.  It takes approximately 15-30 minutes for each child depending on their reactions.  OK, so even if it does nothing for their autism, it's one on one time each day with each child, it's eye contact, it's loving touch.  So worst case scenario- we bond even more?  I can handle that.

The book describes various reactions that indicate blockages and/or lack of energy in a particular area.  The child will shy away if there is a blockage, in which case I should use lighter, quicker touch.  If the area is not blocked but lacks energy, the child will put their hands over mine and push, aka, wanting me to hold more pressure in this area.  Got it.

So we started 3 days ago.  I was told to expect resistance at first, and I have definitely had some- I mean they have to stay somewhat still, and for Nate especially this is a challenge.  That being said, BOTH boys have grabbed my hands and held them to a particular area already- Jack to the top of his head and his ears, Nate to his ears.  Giggling also indicates lack of energy- Nate laughs like a fool when I massage his pinky finger.  Crying indicates a block- my ticklish little Nate sobs when I massage his toes.  It's just astounding.  Also, today, a mere three days in, Jack came running upstairs at bedtime, upset to have to turn off a movie, and he yelled "Mom, I need my massage NOW".  Really?  We weren't supposed to have that reaction for several weeks! 

So in any case, I am giving it the old college try.  Clear benefits exist- a stronger connection with my boys and them becoming less sensitive to touch in areas like their ears.  And of course massage is relaxing- both boys have almost fallen asleep already.  If the other effects of increased concentration, better sleep and improved speech occur, it will just be icing on the cake.  So really, why not?

Good Weekend for Mr. Jack

Jack was faced with a couple of challenges for him this weekend.  Nothing huge or traumatic, just stuff that I worry about.  For instance, his grammy and grandad took him to the orchestra on Saturday.  It was a children's performance, but let's face it, it was live music and this is my kid with major auditory sensitivities.  He begged not to go almost all morning and then went like it was nothing when my parents came to pick him up- my mom and I both suspect it was the influence of grandad, who he really looks up to.  My mom and dad say he did "well" although he was chatty- which is just to be expected.  And I take the fact that they didn't come back early as an extremely good sign.

I got some much needed and appreciated respite this morning in the form of coffee with a close friend who I have been missing lots.  Two hours of conversation later I think we are just about caught up.  :) 

I really wanted to spend some quality one on one time with Jack today.  After this past week of working on the IEP and focusing on his issues, I needed to just be with my little boy and remember how awesome he is.  It was a simple afternoon really- we spent about an hour and a half at a local playground- almost the whole time was playing tag- mommy is beat.  But he also showed interest in climbing a tree which is a first for him.  He used to be nervous about even the jungle gym, so this was pretty cool- he didn't get far, but he wanted to try again and again...

I was really worried about it but wanted to take Jack to a local art show called "Art from the Heart".  It was put on by an amazing local foundation in honor of a girl who passed away from cancer at the age of 13- the foundation was founded by her younger sister (how inspiring is that??).  The art was all created by children at the Johns Hopkins Children Center, except for one small exhibit which was created by kids at the Harbor School, which is a local private school for children on the spectrum.  Jack and I have been talking about people getting sick and he has been asking many questions.  I thought this would be a good way to help him see the human side of all of this- he has the tendency to get caught up in the technicalities of things (no surprise there) but he has such a wonderful heart- sometimes he just needs a little reminder (just like the rest of us).  I confess that I am always nervous about taking him to things like this- didn't know if other kids would be there, didn't know if it would be quiet and subdued or a more laid back atmosphere.  Thank God it was option 2.  Jack looked at the art with me for about 5 minutes and then found out that one of his "old" preschool buddies was playing in the gym of the facility- he went and played with the kids for awhile- fine with mommy- another big positive- social stuff!  The exhibit was so very touching and the art was beautiful.  I am so glad that after texting and emailing various people to ask their opinions (thank you) I took the plunge with him.  Very worthwhile cause.

We then just ran a few routine errands.  Doesn't sound exciting, but when Jack waits in line nicely with mommy it is a major victory.  We picked up some valentines (airplane) that we had printed up and got some envelopes.  Two stores.  He did a great job.  We went to Chipotle for dinner and mommy let him cheat and have a tortilla.  He was a little gentleman.  Other than his funny expression when he tried a pinto bean, haha.

When we got home I got his valentines ready and wrote all of his classmates on the envelopes in highlighter.  Jack sat down with me and wrote every single name (tracing) with very little protest.

I know this all probably sounds a bit mundane, but really, this was a fantastic day.  Jack did a great job with transitions, unfamiliar places, and many new people.  The only time I saw some sensory stuff is when they turned the big lights on in the gym and he ran out of the room as fast as possible.  No biggie.

I am working on a few new interventions for the boys- non medication related.  One we started yesterday officially and one will begin later this week (for Jack only).  Will elaborate on these in another post, but let me just say that I am really thinking outside the box these days.  Wish me luck with that!

Mixed Emotions

So how is one supposed to feel after a meeting like the one I had today?  I have said it before and I will say it again- it is really hard to sit in a room of people and listen to them list all of your child's deficits.  And it will never never get easier.  After almost 3 years of this with Jack I have come to realize that.  So this afternoon was really rough- I always come out of these meetings feeling like I've either been beaten up or run about 2 miles more than I am capable of.  Just exhausted, emotionally and physically.  And this IEP meeting was almost two and a half hours.  Jack's difficulties were laid out before me- his lack of focus, inability to stay on task, the fact that he is slowly falling behind academically, his social awkwardness, his fine motor delay, his lack of motivation to complete tasks.  This is the bad part.

Here is the good....

For a mom who has known these things about her child for a long, long time, hearing professionals not only acknowledge all of this, but commend me for getting him this far is an enormous relief.  This makes me feel a little guilty, but....think of it this way.  What if you knew something was going on with your child?  But it was your first child, and those around you were telling you things like he's just really smart (true), he's very spirited (true), let him cry it out, he can't do it forever (wanna bet?), just take the airplanes away (ha)?  I remember asking his first preschool teacher if she noticed anything different about Jack. She said no.  Clearly she wasn't paying attention.  His next teacher noticed and finally I had a bit of validation.  Even so, I have never felt like his "team" has taken his issues seriously enough.  With Nate it's clear- he's not speaking, he's constantly stimming, he doesn't respond to his name.  With Jack it was never like that.  But I was the one trying to help him focus on crafts, games, puzzles, etc.  He would listen to books (about his areas of interest) for hours if we would keep going.  All this other stuff- he screamed when I tried to do these things with him.  Every single thing we ask Jack to do is a huge battle and it always had been- but he is charming and smart (and precious, sweet, and perfect), and he could mask much of this, even in a half day program.  While at home, life was basically a constant struggle to prevent or stop the tantrums.   Who am I kidding, it still is.   In Pre-K I felt like they were acknowledging the issues quite a bit more, but it felt like they were saying "send him on to kindergarten, let's just see what he does."

Well here we are.  I told the team today that I have been waiting for this moment for a long time.  I knew it was coming and wondered how long it would take.  Turns out, about 5 months in a full day setting.  Today the entire team agreed that Jack needs additional adult support for language arts, morning work, social studies, science, and math.  In case you're keeping score- that's all academic areas.  Upon hearing this, I burst into tears- maybe the team thought I was sad, but I wasn't- I was just so relieved.  I looked over and his teacher was crying too.  No joke.  You could tell she was relating to our situation- once a special needs mom, always a special needs mom.  Thus far Jack has been getting assistance in language arts only.  He will now be pulled to a small group for reading, to a room with an aid for math, the special educator will be with him for social studies/science and the aid will be with him for language arts and likely morning work as well.  This feels like a bit of a piecemeal solution, but it is a solution nonetheless.  And he has his assessments coming, which will likely qualify him for further services.  All of these additions are coming before that even happens, which gives me great hope for this school. 

The advocate?  I have a whole new perspective.  I was still kind of wondering what exactly she would do.  Here are the things I observed:
1.  Her being the "nitpicker" about language and inclusions in the documentation allowed me to be able to discuss the big picture issues with the team without being the "bad guy"
2.  She knows how things need to be phrased to make sure that they are done, she knows to ask them if they require any further documentation in order to get funding for Jack's needs
3. She caught something BIG today.  When I first discussed his IEP with her, I told her my concerns, which I blogged about last week.  That they were only allotting 30 min/day of special ed services.  I told her I felt that he needed more time with an aid and she said that that was irrelevant to the special ed services section of the IEP.  I was confused but figured I could ask about this further today.  Well, in the meeting, she inquired about what was being done during these 30 minutes each day.  The educator stated that this was the time the aid is with Jack.  Ummmm.....turns out this was a BIG no no.  The special educator has NOT been working with Jack directly, basically at all.  All of his special ed time has been with the aid, and the aid time should be separate from the special ed time, which is the time when the special ed TEACHER should either be coming into the classroom or pulling Jack out.  So this was documented, and now the educator will be spending this time one on one with Jack on a daily basis AND the aid will be coming in.  I NEVER would have known to call them out on that.  In my eyes, he was getting jipped. 

So I am glad I hired the advocate.  I am glad that the team is acknowledging the full extent of Jack's limitations for the first time.  While it's hard to hear, in Jack's case it is way overdue.  I am hoping that now that the academic team has seen this, and they agree that he needs more help, we are on the right path.  Next meeting is Feb. 28th, to finalize the assessment plan.

Big Day

Today is Jack's IEP meeting.  For the first time, I am not going alone- an advocate is coming with me.  Unlike before other IEP meetings several drafts have already gone back and forth, information from Jack's private providers has been shared and I have provided a detailed parental input document.

I feel like a little kid going to the principal's office.  I need to shake this feeling off and go in with the attitude that the school has a responsibility to provide these things for my child.  I am glad to have a teammate, I am glad that I feel prepared.  I have examples of Jack's work and I have my boxing gloves tied around my neck- will not put them on unless necessary.  I want to have a good working relationship with these professionals as we have a long road ahead of us.  I feel as though this meeting will be very telling- will they compromise with us?  Will they take my concerns into consideration?  How they react today will tell me a lot about what the future holds. 

So please wish me luck.  Deep cleansing breaths. 

You Need More "you" Time

HA!  I say hahahahahahaha.  This is what our therapist told me this evening.  Again- ha. 

As with many many mommies out there, my "me" time is THERAPY, or driving there or better yet the dentist!  How many of us have fallen asleep in the dentist's chair (and I mean without sedation)?   I had a run "scheduled" today.  Really I did.  However, Nate's bus was stuck in traffic and couldn't get to him this morning, so after Jack's bus picked him up at 8:50 I had to drive Nate to school and get him there by 9- at least 5 miles away during rush hour.  Did I mention that I have never dropped Nate off at his "new" school before?  If you were there this morning I was that idiot mom that pulled into the bus area- yes that was me.  Every elementary school has a very "strict" drop off procedure, and just to keep it interesting each one is very very different.  After having my boys in 4 elementary schools already, believe me, I am aware.  This, however, did not prevent me from making a complete a** of myself.  So idiot mommy had to back down the bus lane and pull in the correct way, only to be told that ECI kids have to be walked in when they are driven.  Awesome.  So I pulled through that lane and parked, and took Nate to his class, and had a 20 minute conversation with his teacher.  And pulled Nate off my leg.  The victory- he didn't cry when I left. 

So I guess the frantic drive home (or as I prefer to think of it- to work) was my me time today.  Today was the only "normal" day this week- aka no run. 

I think it's bed time- hey maybe that can be my "me" time....

The Woman's Got Game!

OK, now I have to tell you, when we left Nate's ABA program for the ECI program the 3 year olds graduate to, I was skeptical.  He was one on one with an aid in ABA, and we had Miss Kristen who came out once a month.  And we loved us some Miss Kristen!

So when Miss Gwen knocked on our door for the first time....well, I was having the usual issues with change.  Miss Gwen comes an hour a week on Mondays.  It is almost becoming a spectator sport among those who love Nathan.  My mom comes most Mondays, and we say that it's because we all want to learn Gwen's techniques, but honestly, as my mom said today, it gives us all such hope. 

What this woman can get Nathan to do!!!!!  I mean first of all, she has him sitting in his little cube chair for an HOUR.  And focusing pretty much the whole time.  She does give him some short down periods, but for the most part it's work work work.

When I say work, what I actually mean is "play" for neurotypical kids.  She gets him to play with toys appropriately.  Today it was race cars going down a ramp (not to brag, but I can get him to do this too, lol), doing a 10 piece puzzle, building a block tower repeatedly and not only that but tricking him into wanting to do it so badly that he had to strain and reach to get the blocks- which he did.  They worked on color sorting, they played peekaboo. 

And this is the one that kills me- she got him interested in bubbles.  He has been ho hum about them forever.  In case you didn't know, bubbles are typically one of the most motivating activities for all kids, but especially kids on the spectrum.  Without this tool, it's kinda like what do I use as incentive now?  She was blowing the bubbles one at a time and he was reaching to pop them.  She repeatedly put the bubbles away- he asked for more.  We have been working on a communication technique with Nate- it's so simple that I don't even really understand why it works.  I just know we have been using it at mealtime, and Gwen used it incredibly effectively today.  It is literally a laminated sheet of paper with three dots on it.  The idea is that when Nate wants something, you take his finger and touch each dot I-want-cup.  The goal is to get him touching each dot when he wants something and eventually filling in the words that go along with it.  Well he has "I want" down pat.  We are working on the nouns, he has a few- like cup, pretzel, chip, and if that isn't what he wants he usually gets frustrated and just starts pointing in the direction of the kitchen saying "that".  What a huge improvement this is!  So today with the bubbles, when Gwen started putting them away, he would say "I want", but not be able to fill in "bubbles".  Eventually he started looking at her and pointing to each of the three dots.  He knew that he had to touch ALL THREE.  That "I want" wasn't adequate.  So he substituted the dot for the word, and when he did so, she gave him the bubbles, and repeated over and over "I want bubbles".  The hope is that he will soon replace the dot with the word.  But it's amazing to have him doing that much.  Every little step is just so so huge.  I can't emphasize this enough to parents of neurotypical kids.  I remember how amazed I was when Jack was developing speech (very very very quickly).  I can't express how hard it is to watch your child struggle so much with communication- every time we jump even the smallest hurdle- it feels like I just WON a marathon. 

And you can tell Miss Gwen feels the same about her "students".  She came in today a little teary saying that another client had his/her first meaningful speech in 2 years during their session today.  Can't. even. imagine.  Miss Gwen does have one magical tool- the cube seat with a desk contraption that goes across it.  Basically Nate is a captive audience.  Starting to think I need to get me one of those!  Of course, I'm pretty sure the desk isn't magical, Gwen is just amazing.

More Than Words

You are looking at a graduate!  Of the Hanen More Than Words program!  A little refresher on what that is:

http://www.hanen.org/hanen-programs/programs-for-parents/more-than-words-parent-program.aspx

More Than Words^® — The Hanen Program^® for Parents of Children With Autism Spectrum Disorder

As a parent, you know how challenging it can be for your child with Autism Spectrum Disorder to interact meaningfully with others and connect with the world around him.
The More Than Words Program was designed specifically for parents of children ages 5 and under on the autism spectrum. Addressing the unique needs of these children, the program provides parents with the tools, strategies and support they need to help their children reach their full communication potential.
More Than Words does this by empowering you to help your child reach the following three goals:

1. Improved social skills
2. The ability to engage in back-and-forth interactions
3. Improved understanding of language

I have been attending this class I think since early October?  First, there are many people who have had to bend over backwards to help me make this happen- Rhonda my amazing coworker and one of my closest friends, thank you so so much for covering my cases while I took a half day every Friday!  And although she doesn't read I'm pretty sure, I need to thank my boss Val for her flexibility in letting me take my vacation time in a rather nontraditional manner.  And my mama- thank you for getting Jack off of the bus most weeks since I couldn't get home in time- once again you came to the rescue. 

Has Nathan made tremendous progress through this program?  I don't really know how to answer that.  He has made progress, yes, no question.  But I think that while this program definitely helped him, it has helped me even more.  To understand Nathan.  He may not be talking very much at this point but he is definitely communicating!  It's almost like this class has helped me interpret his way of communicating.  And it also helped me to accept where he is, and anticipate what will come next.  I understand more thoroughly now that I NEED to invade Nathan's private world.  He cannot be allowed to stay there- basically I need to get in his face, force him to interact with me.  Because he would be happy playing with a ribbon all day.  So I am figuring out how to pull more out of him.  And that is priceless.

This class has also served as a support system in many ways- parents comparing and sharing their experiences, venting about frustrations and at times sharing sadness.  It has been through this class that I have come to realize that while Nathan's "play" is not "typical", he is not the only child that loves to play with tissues, ribbons, and leaves.  He is not the only child who loves to just run laps...and laps...and laps.  These behaviors are actually pretty darn common in kids on the spectrum.  I think I knew this in theory before the class, but being around other real families having similar experiences has been very helpful.  I hope and pray that I am able to keep in touch with people I really connected with- I am actually not too worried about that.  Think it's a pretty sure thing- we need each other.  Good autism mommy friends are hard to find  :-)