Friday, September 4, 2009

Ouch! - Behavior Issues

Whoever said "The Terrible Twos" never had a 3 year old!! Will has been testing boundaries, I guess?? When he does not get what he wants he will hit, bite, scratch, pull hair, and throw things. It hurts! I have had 3 or 4 black eyes and Kevin and I are covered in scratches! (Thank God for cover up!). He just will walk up to you and scratch you or hit you, for whatever reason. The question is what to do about it??
A
neuro-typical child would receive a "Time-Out" and maybe a "pop" on the hand if that didn't work. Well none of that works on our little one. The only way to get him to take a "time-out" would be me holding him down -hands, feet, and head. If we give him a "smack" on his hand he will just laugh or smack you back.
The Doctor said to watch for things that trigger him off..... not getting his way, being tired, not getting his way, etc. That we should be empathetic with him and try and head off the meltdown. Make sure the expectation is within his capacity. I definitely need to do some reading. Going straight to Greenspan's book to managing difficult behavior!!! If we don't see some relief soon we will be making an appointment with Dr. Dunbar and see how she can help.


Wednesday, August 26, 2009

Summer

We have taken the summer off. Will turned 3 in July so our Babies Can't Wait services ended and I looked at that as a good time to take a couple of months and just breathe! No therapy, no doctor appoitments, no research. It was really nice. We took many trips to the pool (which Will absolutely LOVES!! - especially the water slide!), the zoo with Daddy and the cousins, the water park, stone mountain, and even a trip to Florida to see Kevin's family!

So we are starting back into all his treatments with a very positive outlook because Will's speech has taken off!! He is answering questions and even asking "WHY?".

Tuesday
Me: "Do you want to go to Aunt Karen's house?"
Will: "Yes!" just like that, first time I had heard it (mind you, he has had "No" down for a while).
Me:"Will, I love that you just said Yes"
Will: "Why?"
Me: "because it is Awesome to hear you talk"
Will: "Why?"

So very typical 3 year old question right?? Made us extremely happy!! He is following directions much better than before and taking No for an answer without having fits most of the time!


We are raising money for
Parkwood Farms Therapy Center where Will is being treated by a DAN! (Defeat Autism Now!) Dr. for his office visits and hyperbaric chamber dives (can't wait to start those!!) So if you would like to donate to the center (non-profit, so tax deductable) let Kevin or I know and Will gets a percentage off his treatments for any money we raise!!

Thursday, June 11, 2009

"A-Alligator, B-Bear, C-Camel..."

Will is "alphabet crazy"! He can say and identify every letter, even lower case and LOVES to point them out for you. He is adding new words daily and I would say in the last month has added at least 20-30 words! Can't tell you how long I had waited for him to say Mommy!!! Not only is he adding words, but he is also responding to directions and also vocalizing his wants and needs!! I highly recommend the website http://www.starfall.com/. Will really loves it!
He is seeing a new Doctor at Parkwood Farms Therapy Center and she has added some new supplements that I think are helping greatly. D3 and another chelating agent added to the rest of the ones he is already taking. We are about to start Hyperbaric Chamber dives! Click
We are so very excited about this treatment and to get the test results back from his recent lab work. This week was the year anniversary of Will's diagnosis. You truly see who is there for you and who is not when things like this happen to your family. People surprise you both good and bad. I guess I am just grateful for the good surprises Kevin said "not really an anniversary he wanted to celebrate" and I agree. A lot of sadness and feelings get stirred up when I think about that day things became "official", but we try to look at the improvements that have been made and how far we have come, instead of how far we are behind.

Monday, May 25, 2009

Summer!

Don't have time to post much, we have a lot that we are into right now, some new treatments and such but will get to that later. Here are some pictures that Kevin took of Will just enjoying the beginning of Summer and his favorite thing to do, play in the WATER!!!!

About to domino his cousins and brother!

And down they go....








Wednesday, May 20, 2009

Non-Verbal

The other day I was standing in line at Walgreens and in front of me was a mom and a little boy, probably around 3 years old. He was talking her ear off... "What's this?, "Look at that?" "Hey mom, why is that lady doing that?", etc. The mom was tolerating all the questions but not appreciating them. Kevin and I long to hear Will talk our ear off! To know what he is thinking, what is wrong, or what we could do for him would be so wonderful. Will is talking more and more. He loves the alphabet and numbers and he is can identify almost every letter! (And actually thanks to Grandma and Ni Hao Kai-Lan he can say a few of the Chinese letters too) Now he will tell you Bye and even blow you a kiss (he even does that to each car that drives by!) He can say Zebra, Hippo, Apple and will repeat the shows he watches on TV. He doesn't say the sounds correctly yet, possibly Apraxia or Dispraxia or maybe even a Auditory Processing Problem? Not really sure yet, might just be him learning the sounds. Nevertheless, the number of words are growing and that makes us quite happy!
Last night however, something was wrong with Will. It was bedtime and he was out of sorts. Usually it is time to go to sleep and he will get in his part of the bed, pull up the covers and cuddle into the nook of my arm ready to hear me sing his night time songs. NOT LAST NIGHT!! He kicked my butt. He was hitting, pulling my hair, crying, scratching, etc. It was not just because he wasn't ready to go to bed. He did this most of the night. So Kevin and I, trying to console him, put on his favorite cartoon "Sean the Sheep" and he was not interested. We both start worrying. Because Will is under sensitive to pain it is very possible when he fell off the couch head first, earlier that day, that he had injured himself, or maybe his stomach still hurt (we had just gotten over a stomach bug), or any number of things. But he could not tell us. He could just show us his unhappiness. So finally, I got him to take some Motrin and he slept for a few hours in a row. That has to be the most frustrating part of having Will be non-verbal at this time. I know he loves me and he does a good job of showing that. I am okay that he says Daddy and not Mommy. I just want to know what is wrong when he is hurting. So hopefully, one day in the near future he can talk my ear off and I will appreciate every moment of it!

Friday, April 10, 2009

Angels among us...

Our new back deck!

Daddy and Uncle Scottie hard at work!
Will and cousin Jason watching all the fun!


Posting has been few and far between lately. Mom, Will, and I all had the flu and then Mom went into the hospital, had surgery. Thank God she is okay! Because of the severity of everything with Mom, my little brother Scottie was able to come home from Alaska to visit. I had not seen him since 2004 so I was quite excited!

Scott knew how bad I wanted a deck in the back yard so Will could play outside without always heading for the street or throwing himself off a six foot hill. So he did all the plans and he and Kevin got to work! With the help of my older brother, nephews, and brother-in-law they built a beautiful deck with gates so that Will could play outside as much as he wants!! Something he absolutely loves! Scottie worked morning to well into the night as did Kevin when he wasn't at work. I think Scottie spent like 15 hours at the Home Depot! He worked until the moment he left for the airport! Kevin continued working the next few days to finish. Thank you all for the hard work!!
With mom in the hospital, I spent a lot of time away from home. We had many visitors in the house and our general routine was way off. With that, and still being a little sick, Will was in rare form. Hitting, biting, pinching, pulling hair. It sucked! I guess that is how he deals with everything. Wants to make sure everyone feels how he is feeling?? Not really sure but glad it is mostly over. He still has a hard time dealing with not getting what he wants but part of that has to be being two. He has settled back into his happy self and I'm happy to report stress levels are going down!
Will is enjoying his new deck and his new found freedom of being able to go outside by himself. (Of course, we have an eye on him) but he can play with his toys, play with water, and throw things off the deck and is quite happy!!
Lately we have come by some of the worst and some of the best in people. Whenever we take Will out we know there is some chance of someone being ugly, making some comment about him. We have come across some of those people lately. But we have also come across some that restore faith in humanity! My brother could have easily enjoyed his time in Atlanta, sleeping late, and laying by Keith's pool, whatever. But he chose to do something so special for our family. He has no idea how much it means to me. On another note, a women who has never even met Will has again given him a gift. She is the Mom of a good friend of Kevin's. She has given us $300 dollars for Will's treatment! Which we greatly appreciate. It is people like that, who come out of nowhere, who surprise me. Angels among us.

Saturday, April 4, 2009

Wow Wow Everyone!


We love Wubbzy so we were really excited when he decided to promote Autism Awareness Month. Will watches this video over and over. Check it out!

Thursday, February 19, 2009

Floortime Atlanta

Kevin and I are taking a parent class at Floortime Atlanta with Dr. Barbara Dunbar. It is Monday nights from 7-9 so it is a really long time to be away from Will (we both leave straight from work). The class is based on the book Engaging Autism by Stanley Greenspan (see books to right). DIR/Floortime is a type of therapy for developmental disorders.


The most commonly known behavior therapy for Autism is ABA (Applied Behavior Analysis). It is what your pediatrician would most likely recommend once your child is diagnosed. This therapy uses positive reinforcement to get what 'behavior' they want from the child. ABA works for a lot of people but it focuses on actions (say this, do that, etc. and repeat until they get it correct then they get an M&M or some kind of reward). This was definitely not what we wanted for Will. We didn't want him to be able to pretend to fit in this world, we actually wanted him to want to engage.

DIR (Developmental, Individual Difference, Relationship-based)Floortime is based on emotional development. Using DIR/Floortime you asses your child for their unique challenges and strengths and tailor a program specific to the child. "The objectives of the DIR®/Floortime™ Model are to build healthy foundations for social, emotional, and intellectual capacities rather than focusing on skills and isolated behaviors."
Click here for more info
They call it floortime because you actually get down and play with your child. You follow their lead and use things that they are interested in and try to enter into their world so you can help them in ours. You work on building a foundation that might have been missed because of something like sensory issues. The program works on reaching the 6 developmental milestones that your child must master for healthy emotional and intellectual growth.
see milestones

This therapy was recommended by a friend (Thank you Ashley!) when we first started to worry about Will and then again was recommended by Will's Neurologist Dr. Schub.
I have already learned so much in the class and in the book and we have been working with Will and have already seen improvements. I am so anxious to really start spending more time having "floortime sessions".

You can do 'floortime' anywhere and always but it is important to have structured alone time with your child to reach these levels. We are creating a 'therapy room' in our house for this reason. Basically, we are taking the playroom and moving out most toys. Taking away the distractions. Only keeping the toys that we can play with together. Keeping his sensory toys and items to help with his different sensory issues. I will post pictures and items that we are using and the benefits the certain items in anther post.
I believe that with DIR/Floortime and the biomedical approach that Will is going to do great!

Tuesday, February 3, 2009

A good therapist is hard to find...

Will's speech therapist comes once a week. He works for us through Babies Can't Wait. (I think the program is a good idea but they get so bogged down with all their processes that it is about impossible to get anything done.) I'll get back to that in a minute... Anyway, his speech therapist is a guy and he comes every Tuesday. Now I don't know about your kids, but my 2-year old Autistic son is not going to sit still for 30 minutes and look at flash cards! I pretty much have to hold him down kicking and head butting for the entire time. When we first started with Babies Can't Wait they sent a girl who believed in teaching through playing, what a crazy idea! Well she left on maternity leave and when she came back she was in a different area. So we are stuck with Flash Card guy!

Will talks all morning and when this guy gets here he just shuts his mouth. Now, I would call our "Service Coordinator" with Babies Can't Wait and request a new therapist, easy right? However, when I fired our Occupational Therapist months ago they told me I would be getting a new one and I have yet to see that happen. I doubt by the time he ages out of the program in July I will have gotten a new one. Will does have a "special instructor" that comes on Wednesday's and he really loves her, so I am grateful for that!

It is just really sad that our kids need so much help and it is so difficult to get unless you have above average means (I was just reading about a family who spent over $1 million dollars in the first 10 years of trying to develop their son ). Now we are hoping with our new insurance that some of these services will be covered but typically Autism as a diagnosis is not covered. If you had a stroke your insurance would cover speech therapy because you can recover from a stroke, but the mainstream doesn't think our children can recover so they don't pay for it. Now what is wrong with that picture?!!?!!?


Saturday, January 10, 2009

Heavens Very Special Child

HEAVENS VERY SPECIAL CHILD
A meeting was held, quite far from Earth!
It's time again, for another birth.
Said the Angels, to the Lord above,
This special child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem, quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent,
We want his life to be content.
Please Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
by Edna Massionilla

Sunday, January 4, 2009

The joy of Uh-Oh, Chelation update, ATEC score, and oh more teeth problems.


When Will was just learning to talk, before regression, I couldn't wait to hear "uh-oh". I actually used to always say "uh-oh, spaghetti-O" because I thought it would be really cute to hear him say that. Well, it didn't happen. Uh-Oh was not one of his words that he used before he lost them all.
To my absolute delight since we started chelation Will has been using "uh-oh" all the time!! In the morning when he realizes that he doesn't have his two favorite cars (Lightning McQueen and Chick Hicks) he looks at me and says "uh-oh" in the cutest little voice imaginable. It is such a great way to start my day!
Chelation is a super pain in the butt. It is 5 days on/5days off of putting a DMSA suppository up his little bootie. I HATE it! We would use the pills but they are not as effective, taste awful, and if he doesn't want to eat then that creates a problem. They cost around $150 for 10 pills so we pretty much need to make sure they get into his system. I wait until he is sleeping and it usually wakes him up but will go right back to sleep. The following day he is super-pooper. I'm talking about 6 poops the first day and the next few days 3+. (Sorry about the TMI but mom's of kids going through Chelation like to know what to expect) He also is getting the Metal Free every night as well as all his other supplements. But if it helps him get all these heavy metals out of his system then it is worth it. We will continue this regimen and then re-test him for heavy metals and see where to go from there.


* My son likes to sit in the dryer, it totally freaks Grandma out!


On a very happy note Will's ATEC score (which stands for Autism Treatment Evaluation Checklist available on the Autism Research Institute website)has gone from a 87 to a 68 (the lower the better) since we started biomedical treatment with Dr. Sloan. The ATEC is a one-page form designed to be completed by parents, teachers, or caretakers. It consists of 4 subtests: I. Speech/Language Communication (14 items); II. Sociability (20 items); III. Sensory/ Cognitive Awareness (18 items); and IV. Health/Physical/Behavior (25 items).
Mind you this is without any ABA and just beginning Floortime Therapy. Also, a little bit of speech and special instruction. We are true believers of Biomedical and now have seen it work first hand.
On an unhappy note, a few minutes ago Will was chewing on something and sure enough it was the crown that we just had replaced last Monday! ARGH!! Not sure if they are going to try to put a third one on or not, all I know is that it will probably cost a lot of money.
So, good and bad, that is what is up with us this week.

Saturday, January 3, 2009

2009

What a year. The end of March was when we realized that something was going on with Will and the official diagnosis was June 25th. It feels like I just found out and that we've been dealing with this for ages, all at the same time.

Dr. Sloan says we are ahead of the game with how early we started treating him and Dr. Dunbar says that based on thousands of children she has worked with she is pretty certain that Will is going to talk. Both of those things bring me comfort.

Kevin and I are taking a parent course in Jan/Feb with Dr. Dunbar at Floortime Atlanta that will teach us how to do Floortime therapy at home. I am really looking forward to the course and learning how to use Will's strengths to help him develop.

I am excited about 2009, being as hopeful as I can that we can recover Will. I enjoyed the holiday and xmas but I am anxious to get back to normal because I think the changes are a little difficult for Will.