Wishing we were on Boriquen with all of our family

Friday, March 25, 2011

Week 1 in review

First with a brief homeschooling note. We are in the middle of our Language Arts block. This week ends our Saints and Heroes and next week we will use animal tales. Ds really enjoys the stories and is looking forward to next week. I enjoy this as much as he does. Here's a couple of photos from this week's ML
As so far as BB, everything feels like clockwork. Both children enjoy going to the center and the center makes an effort to help us feel welcome. This is not only in regards to the staff but the other parents/grandparents as well. I have enjoyed the various conversations and interacting with the other children.
Our parents are so excited about this adventure and look forward to participating.
Of course the question that everyone has asked is "do you see any change?" HELLO! It's only week one and not a full one at that. We didn't start doing our homework until Wednesday. I am just happy that ds is not totally resistant to the whole thing. His only beef is with some of the core exercises and having to wear ear protection.
As so far as the enzymes and the GFCF diet, we continue on. I am so thankful that there are some pretty yummy products out there that help make to sticking to the diet so easy. Our favorite pasta is made from quinoa.
He is taking the enzymes with every meal. I found that ds will take it rolled up on a slice of turkey. I will try the chocolate melts recipe to help make it more portable. Again, do I see a change? It's too early but he does seem to be more present and talkative. But it's still too early and hard to measure. In a few more weeks, after some research of course, I would like to try adding probiotics into his diet.
Two things that I noted prior to starting the diet were his bad breath and some serious build up on his teeth despite his good oral hygiene. DS also has notable bumps on his sideburns and the back of his arms. I didn't think anything of it until after reading information about the GFCF and enzymes. Would this change of diet and supplement help with these issues too? Time will tell.

Tuesday, March 22, 2011

So Resilient

We had an incredible start to this week. 2 hour drive, 1.5 hour lunch at PF Changs (winning!), 3 hours @ BB, 2 hr drive back. We reviewed of all of the tests, what side is imbalanced, and the plan of attack to help ds. Then we decided to stay for our first session. We met some wonderful people, both young and old. We didn't drill ds with questions about his first session and plugged them into a movie for the trip home. Got home, ate dinner, then off to bed.
Today was filled with some more driving and reviewing the results of the formal evaluation that was done by the psychologist about 6 weeks ago. Some great information and I am glad all of this was done.
As the day went on, I found myself unraveling. My two children, on the other hand, have proven that they are far more resilient than I am. They didn't whine or complain at all through out the adventure. This proves that even with a two days of monkey wretches thrown at them, good planning, great support and a regular schedule otherwise, they will flow with it. (this time).
Another good note was from ds's Speech Therapist. At the end she commented that he had the best session yet. Trying not to look into this too much. Too early to tell.
Tomorrow we are going to our next BB session. Only 35 more to go.

Friday, March 18, 2011

A little more detail

Here's an ADD checklist that I found:

Inattention (must meet six of the following to a degree that is "maladaptive"):

  • Often fails to give close attention to details or makes mistakes in schoolwork; Most of the time
  • difficulty sustaining attention in tasks; Sometimes
  • seems not to listen; Sometimes
  • fails to follow instructions or finish work; Sometimes
  • unorganized; Sometimes
  • difficulties with schoolwork or homework; Sometimes
  • loses things like school assignments, books, tools, etc.; Yes
  • easily distracted; Sometimes
  • forgetful about daily activities. Sometimes

ADD with Hyperactivity (must meet six of the following to a degree that is "maladaptive"):

  • fidgety in a squirmy sense; Sometimes
  • doesn't stay seated; Rarely
  • runs or climbs excessively (or feelings of restlessness in older children); No @ home
  • difficulty playing quietly; Rarely
  • often "on the go" or acts if "driven by a motor"; No
  • often talks excessively; I wish
  • blurts out answers to questions; Sometimes
  • difficulty waiting in lines or waiting turns; Sometimes
  • often interrupts or intrudes on others. Sometimes
The above list I got from http://borntoexplore.org/whatisadd.htm.

I wanted to elaborate on some of ds's issues that we hope will improve:
*He walks down the steps with his right foot leading.
*He is very eager to be with other children/people but has a hard time regulating himself once there. Ds is either too much and isn't able to process his friends' reaction/needs fast enough or completely turns off. I often find him needing to retreat into a safer activity, such as looking at books in the middle of a visit. He still wants to be there, but choses a calmer activity that requires less interaction. This is one of his coping mechanisms.
*He has a hard time transitioning from one activity to the next most of the time. His reaction has improved a little and the time it takes to shift gears has lessoned.

It will be very interesting how these issues evolve. It is so hard to read and watch the testimonials about Brain Balance and not have high hopes. With such intense therapy, I do expect that his coordination and body awareness will get better.
Sound body, sound mind.

Thursday, March 17, 2011

The List

So what are we working on? Here is the list of things that ds needs to work on:
(I got the list from Asperger-Advice.com)

Poor communication such as:

Speech and language peculiarities: Yes

Overformal speech: N/A

Taking everything literally: not all of the time

Word repetition (echolalia): at times it may be a song/line from a movie/show

Long monologues: N/A

Inappropriate remarks: what 8 y/o doesn't

Inability to take turns talking: sometimes

Inability to listen to others: sometimes

Speaking without any pitch or tone: N/A

Unable to recognize figure of speech or sarcasm: somtimes

Difficulty initiating conversation: N/A

Flat, cheerless demeanor: N/A

Loud voice: only when he is REALLY excited

Doesn’t respond to name very well: N/A

Non-verbal communication problems such as:

Inability to pick up facial expressions: N/A

Not able to notice body language: this one may be a little difficult

Does not pick up subtle changes in someone tone of voice: N/A

Avoid eye contact while communicating: rarely; this has significantly improved.

Unaware of personal space ( invading it!): most of the times

Few facial expressions: N/A

Unaware of unwritten rules: sometimes

Impaired social interaction such as:

Social withdrawal: rarely

Lack of interest in other people: N/A

Eccentric personality: what 8 y/o doesn't seem eccentric

Preoccupied with their own agenda: sometimes. It interferes with transitions

Socially non-adapted personality: I'm not sure about that

Urge to correct people in their speech or behavior: Witness this first hand in the classroom and home

Limited interests: N/A

Unusual preoccupations: N/A

Need for sameness: N/A

Repetitive routines or rituals: N/A

Engages in highly repetitive play: Yes and combines with his stimming

Excellent rote memory: only with things that he is interested in.

Lack of empathy: N/A

Single-mindedness: N/A

Aloof: N/A

Inflexible thinking: Only in transitions

Lack of imagination: Far from it

Indifferent: N/A

Rigid thinking: sometimes

Lack of make-believe or imitative play: Far from it

Fear of changes: age appropriate

Poor motor skills such as:

Poor coordination: YES

Clumsiness: YES

Uncoordinated motor movements: YES

Hand flapping: N/A

Head swiveling: N/A

Mirroring: Yes. From shows/movies/book on tape

Stilted Doesn’t have a strong response to pain: N/A

Extreme dislike of certain noises, textures or situations: Only when he is frustrated with the situation

Easily over stimulated by sounds, crowds or lights: Only when he is frustrated with the situation

This is our starting point.

Wednesday, March 16, 2011

Beginning of Journey

So, here we are. At the beginning of a new journey.
After a lot of reading and research, our family is in the process of trying a couple of things to see if they would help our ds with his aspergers.
We started with the Gluten Free Casein Free diet at least three weeks ago. I tried this before (not as full heartedly or as informed as I am now) but didn't see much come out of it. This timed, armed with much more information, I believe that there is some change. I mainly noted it when we deviated from the diet. One night, I ordered pizza which he happily ate for both dinner and breakfast the following morning. He was not "present" during his lessons. He seemed to have completely forgotten/lost what he learned and had been practicing for weeks. It was so disturbing that I was in tears by the end of the lesson. With this experience, we decided that we needed to continue with the diet.
My only concern was that I've read that so many started on this journey only to find that they had to keep eliminating other foods and the list seemed endless. I didn't want to be on that road when I have a child that would eat almost anything. Ds is NOT a picky eater. I mean the boy eats asparagus, anchovy stuffed olives, and even sushi without any complaints. We are not talking about just california rolls here (which took a little convincing to keep the avocado in). I mean raw octopus!
After doing more research, I found that a lot of parents went the enzyme route. So I figure why not do both; We are keeping the basic gluten free casein free diet and have started on the enzymes as of this past weekend. We are still in the introduction stage so it's hard to tell.
As so far as therapies, I've found great resources locally but stumbled upon something that struck a cord with me: Brain Balance. During my online research, I found another mother who is blogging about her son with aspergers (she's in my list of blogs that I follow). She mentioned something about exercises that she is doing with him and I emailed inquiring about what program she was doing. She informed me about the book Disconnected Kids and the Brain Balance program by Dr Melillo. I purchased and read the book (along with Enzymes for children with autism and other neurological disorders) and thought we would try this program at home mainly because the closest facility was two hours away.
WELL, my MIL (who is a special education teacher in SC) just happened to get an invitation to an information session near her. Both my FIL & MIL went. They called us immediately after to tell us of the session and how they think ds would benefit from such a program.
DH went to an information session the following week and we have since signed up (yes that means we'll be in the car A LOT). We just finished the initial evaluation and are going to the report/findings meeting on Monday.
The long and short:
*Homeschooling using a waldorf inspired curriculum because we find it to be the most
therapeutic curriculum out there.
* Enzyme therapy using Houston Enzymes AFP Peptizyde
* Brain Balance Program

I will update to share how things are going.

Tuesday, March 1, 2011

New Journey?

Our camera is still MIA, but many things are happening. Ds has gone through a formal eval and the preliminary diagnosis is aspergers. We are still waiting for the formal to come in.
In the mean time, I've been busy. Homeschooling, investigating, reading and scheduling. I have found a few great resources and are expanding our therapies.
One of the things I stumbled on was Brain Balance. Ian and I have read the book Disconnected Kids and through family discussions we decided to go forward. Open house this week and have scheduled the initial evaluation. Will keep you posted and wish us luck.