Sunday, February 26, 2006
Off Gabe and I went to do our weekly grocery shopping. He did great, but was a little antsy towards the end. I think it was due to him laughing and talking up a storm at 2:00 AM. Sleepiness was rearing its ugly head around the lettuce heads. I always let Gabe out of the cart to say "Hello" to the lobsters in the tank and sometimes it can be difficult getting him back in (The cart is overflowing and heavy by now). Today I had a difficult time getting him back in at the lettuce heads.
He towers over me as he stands up in the seat, refusing to slide his feet into the holes in the cart. BUT, what was really cool ,was amongst all the shrill screaming (it was loud) I calmly and patiently waited and guided Gabe through the ordeal of sitting down in the seat of the cart. I also realized that I no longer felt "the stares". The "stares" and the "Tsks" no longer were heard or even mattered to me anymore. I have graduated to the "I am OK and satisfied with my parenting!" Wow. I never thought I would get to this level. I have always been insecure, who hasn't, but nothing makes you check yourself twice than parenting.
So, after getting Gabe situated in the cart, we continue shopping. He admits defeat and we start getting some fruit. First to the bananas. Gabe has started an eating program at his school. He still eats only stage 3 foods, but feeds himself and we are able to provide him a well rounded diet of fruits, meats and vegetables. The problem exists where the food leaves the puree Heinz or Gerber Baby food consistency and meets table food. So, our first food to "transition" is his stage 3 Gerber strawberry Banana mixed with mashed real banana. Oh the day when he will eat real food! Our next milestone that we will be working very hard on, taking data and everything. I can't wait. This will be a big one :o)
Anyway, I'm getting off track. Off to the bananas. Hmmmm, have to be somewhat ripe to mash. I wonder, while I pick them out, if he knows what we are using them for. As I am pondering that thought, Gabe reaches over, grabs a banana and takes a bite.
Then he bites again.
Not once, but twice with the peel still on!
What's with this produce section?
So, quickly I peel the top part of the banana open and hand it over.
Here, eat it like this...... (Big mommy smile)
Could there BE anymore anticipation....(use Chandler's inflection from Friends)
Then....He looks at me, shocked that I defaced a perfectly good banana and says with vigor......
"ABSOLUTELY NOT MOTHER!!!"
No, sorry, that's not true.
But, his "No" sure sounded that way to me.
Saturday, February 25, 2006
9:00 AM -My day started out with Gabe hanging on a door knob for 4 minutes crying and screaming, because he wanted to go back to a room he was not supposed to be in.
10:00 AM Sitting in my OBGYN's room #2 wearing a napkin for a top and a paper towel for a mock "skirt?" for an entire HOUR only to have to leave without my yearly check up.
11:15 AM -Possible accident #1 -Almost getting backed into in the OBGYN's parking lot.
12: 23 PM -Possible Accident #2 -Almost getting hit by someone who was speeding past a cop at an accident.
12: 30 PM-Possible Accident #3 -Passing on the right, because I thought someone was having car trouble in my lane, only to wonder why everyone in that lane was giving me dirty looks. Where was all this traffic coming from? Why does everyone have a flag on their car?.....OMG! I cut off a huge funeral procession right by a cemetery. I couldn't lean down far enough in the driver's seat.
2:30 PM- Nerves frayed, I went to Dairy Queen for a refreshing Blizzard. I was almost home. I made it! So, I ordered a small vanilla soft serve blizzard with Heath and pie crust crumbles, top with whipped cream.YUMMY! The vanilla soft serve was not working and Chocolate gives me reflux.
3:00 PM -indigestion from chocolate blizzard
Thursday, February 23, 2006
The goal I set for myself today was not to be intimidated by Gabe's Gastrointestinal Doctor. I call him Dr. Sarcasmo. In order to be able to follow through on my promise, I made a mental agreement to myself before the appointment to do the following things:
1. Keep eye contact -Don't shy away you deserve to be heard
2. Have a prepared question list -Sometimes you forget because you get flustered
3. Do not leave until you are satisfied with ALL the answers to your questions. Who cares if there is a waiting room of people and Gabe just pooped, you need the answers NOW.
4. Demand answers to your questions. If he doesn't know, make him say it in one way or another. It's not up to you to know everything about this doctor's specialty. Make HIM accountable.
5. Hold my end of the conversation- take turns at "the podium"
6. Get "The bottom Line" -Circle talk is unacceptable. What is the next course of action?
7. Tell him to fix his room if he shows/says that he is uncomfortable with how Gabe is touching things in his room. He did this last time and I actually apologized for my son touching things in his child unfriendly room. Not this time.
8. Emphasize that you are not a "testing maniac". All you want to know is if HE thinks HE has done all he can for Gabe.
9. Dish back some sarcasm with a smile. If he can give it, he better be able to take it and believe me, he's FULL of "it".
10. Demand a copy of all tests administered to Gabe and not just the cover letter explaining the outcome/results, get the actual reports. We will not be returning.
11. Start a binder with all his medical tests and paperwork. You need to start being the liaison between these doctors, because they can't seem to step up to the plate. Take your binder to all appointments and get copies of EVERYTHING. This will make your doctors very uncomfortable. It may make you uncomfortable, especially if you are not a wave maker. Just say it is for tax reimbursement at the end of the year.
By the way, I did all that I promised myself today, each and every one. I even told Dr. Sarcasmo that he needed to fix his heating register. He made a comment when Gabe tried to stick his cars into the register that was missing parts of the grate. So, I said he should probably get that fixed, ("Don't you think so?" I said. Especially since you work with mostly children? *touch of sarcasm*) He made some lame excuse, but I said it and I was right.
Gabe does not have Celiac Disease according to this doctor. YEAH! He was tested and is normal. Dr. Sarcasmo did not,however, have a solution to Gabe's reflux, but assured me that we have done all the tests appropriate for his age and the Prevacid is protecting what needs to be protected. It took about 45 minutes, but I got my "Bottom Line".
I felt absolutely wonderful when I left his office. Gabe isn't healed, but I sure felt like I was. I stood my ground, got my answers, and did everything I needed for myself and treated Dr. Sarcasmo respectfully. We won't be going back, but I sure will miss the look on his face when I held my own.
Tuesday, February 21, 2006
What is even more amazing, is that after their evaluation, I could continue getting support through their program that focused on parent teaching of ABA with one on one training with you and your child. WOW. They were not going to hand me a huge and costly report, shake my hand and show me the door. There was continuity. There was hope. I was ready to do whatever it took to get Gabe the help he needed. I could go on and on about this program. Hell, I wish I could live there. My whole family. Gabe's therapists are like family to me. Oh, I am about to cry. So.....alright..let's move on.
The ADOS. This was the first of the four tests that Gabe would be given through the evaluation process. The ADOS is a standard test that is used in diagnosing Autism and other PDD disorders. Gabe was 2 months shy of 2 years old (22 months). We sat in a 8x8 room that had a table. SD and I sat in two chairs on one side of the room and the Autism Specialist began in a chair on the adjacent wall. She had all kinds of fun things to engage Gabe; bubbles, toy frogs, cars, and some cookies in a canister. All these miscellaneous items would soon reveal quite a bit about our son. Sometime during the eval, Gabe took the canister of cookies and tried to figure out how to open it. He wanted those yummy cookies. He kept licking his lips and pulling on that lid with all his might. He never turned to anyone for help. It was as if we weren't even in the room. I had no idea that he really acted as if he was all alone. Couldn't he see me sitting right there? But, he never did and he eventually lost interest in the cookie.
The other thing I remember was the doll and the birthday party. She had taken out a doll and a plastic cake. They were going to "celebrate" the doll's birthday. She started singing "Happy Birthday", while the doll sat next to the cake.
"Let's sing a song Gabe," she cheered.
Gabe was the least interested in this activity. He wanted nothing to do with the doll and wondered where the bubbles had gone. He engaged really well with the bubbles.
"Bubbles. Bubbles. Bubbles" he repeated.
My heart sank and I wondered if Gabe ever knew I was there at all.That I would do anything for him, even if he never asked.
We did have two signs of hope from Gabe in that hour. He acknowledged us once while we were there by putting a blanket on his head, taking it off and shouting "Boo!" to us. The other was a beautiful imitation of a frog hopping on the table with the specialist leading. Those two things may seem small, especially to those outside the "Big A", but they gave a glimmer of hope and possibility for Gabe. He could imitate, the foundation for everything I believe, and he could be engaged.
The rest of our journey continued through this program and still does today. I honestly never want to leave. I have a group of people that care and work very hard with Gabe in helping him to be the best he can be. He loves going there. He gets hugs, kisses, plays, snacks and learns new things everyday. He is the type of person that loves a mental challenge. That's why I think ABA works so well for Gabe. He is in a loving environment, it's consistent, and it's mentally challenging. If mainstreaming wasn't so important, I would try to keep him in this program forever. They are the village I want to help raise my son.
I think this is where I am going to end my reflection on our beginnings with Gabe's diagnosis. I originally wanted to document the step by step process, because I remember wanting so bad for someone with experience to lend a hand in showing me what to do and where to start after a diagnosis of Autism. I would've loved a mentor. Now, I look to other blogs of people for advice and strength. I hope that I gave a large enough glimpse for someone who may need a candle lit in the dark.
So, I'm stopping here, because halfway through the three entries I wrote, I became more interested and excited about the here and now. How great Gabe is doing, how strong I have become and how proud I am of my son, myself and my family. I have too much to celebrate to dwell. It's time to move forward.
My advice through all this.....
Trust yourself. If it feels wrong, it probably is.
And....As my fellow coworker once said to me,
"Kristin, You attract more bees with honey than vinegar."
I tell myself this every time I call the insurance company.
Sunday, February 19, 2006
I did tell my husband after a week of staying up till 3 AM reading online. I had begun to start writing in journals about Gabe's eating, talking, behavior and information about Autism. I was writing, making phone calls and crying all day long. My daughter, Boo, began to stutter. The stress and saddness enveloped our family.
The school system saw Gabe first, because they had the earliest appointment I could get. The Special Ed. teacher came to my house and talked to me for about 1 hour for the intake. Then the OT,PT, Speech and Psychologist came for a meeting at the school to observe Gabe for a half an hour. A half an hour! I can't eat lunch in a half hour and they were going to give their "diagnosis" of a possible neurological disorder to my son? Disappointed doesn't even begin to explain how I felt.
During that time, each person in the observation group would try to engage Gabe. The PT took a toy away from him and put him in a plastic tote that was surrounded by a net and proceeded to swing him as he screamed. After finding that the swing wasn't such a good idea, the PT took off his shirt (Oh no) and slapped his cold body on a pilates ball. What did this all show me? Well, that they have the ability to really piss Gabe off to the point where he was screaming and huddled in a corner after 15 minutes.
The team then turned to me and said "What do you do at home when he is like this?"
I wanted to say, "Well, I don't normally strip my son down, roll him on a ball and throw him in a swing."
this is what I mustered, " Just let him calm down on his own. He does not like to be touched when he is upset."
Then I got the stares.
Oh great, another opportunity to cry.
We left with a diagnosis of Developmental Delay. I knew they were wrong. Gabe was delayed in speech and social skills, but because he didn't stim to their specifications, hand flapping etc, he was not Autistic. Gabe carried around two of something wherever he went. It soothed him. Two balls, two cars, two
Polly Pockets. Even I saw that as being unique to Autism. I left knowing that I would have to wait another month until I had some real answers. That was the earliest appointment I could get with a team of specialists in Autism through a leading hospital.
One month later on my birthday, he would be given the ADOS.
(to be continued)
Friday, February 17, 2006
"You never know what you need till you find it, and that it maybe the one thing that changes everything "(CSI)
It was one year ago this month that everything started coming together. Scary to think that in one week, the past year and a half of my son's life began to unravel right before our eyes. It started as a comment made in passing by a mom in a local Moms Club. She was obnoxious and loud, but I owe her. I owe her big. Really BIG. She put the word Autism out there where I could hear it.
We had been at a local gymnastics place with a group of moms. Boo was having a blast and Gabe was everywhere. He was 1 1/2 years old and I felt that he was going to be the end of me. I could not rest. I was losing my friends and I did not see any other moms chasing their children like I did Gabe. "What was up with our genes!?" I thought to myself. My daughter was nice, easygoing, a true people pleaser. She would break into tears if she knew you were disappointed in her. Gabe had no idea you even cared. He didn't care.
When it was time to leave, I was helping Boo with her coat and shoes and Gabe took off. Sweaty and tired, I ran after him and eventually pinned him between my two legs. He started screaming....LOUDLY. I am a very patient person, but I didn't think that I could do this anymore.
That's when I heard "Hey Kristin! I've got a kid leash in my car if you need it."
It was the loud mom. She really was trying to make light of the situation. What was kind've weird was that I was about to take her up on it, but knew Gabe needed to be carried, as always. The leash would've been useless.
She quickly quipped, "My friend used it for her son that was Autistic and forgot it in my car."
Gabe needs something that an Autistic child needs? My stomach lurched and I quickly thought about something else.
The next day I got online and looked up Autism. Gabe didn't line up toys or spin, so I thought whew. What got me was when I started calling his name and he never responded. NEVER. No matter where I stood, no matter how close or far, he never flinched, smiled or acknowledged me there at all. By the time SD (Super Daddy) came home I was crying and screaming my son's name to no avail.
He thought we should get his hearing checked. I hadn't even mentioned to him that I had suspected Gabe was Autistic. I could barely admit the possibility to myself. I read the word over and over online, but wasn't ready to say it.
That same week, we received our weekly Newsweek magazine. On the cover was a baby and the word Autism, BIG and BOLD. Why did I keep hearing this word? I was beginning to think that God was now shouting at me. I read the article over and over. I hid it in my nightstand drawer. I didn't want it to be a part of our lives....but it explained so much about Gabe. So many questions had answers now. But why? After all I had survived in my childhood, was this a way to repay me God? Why my son?
(To be continued)
Thursday, February 16, 2006
Wednesday, February 15, 2006
My family has been sick for part of last month and now halfway through this month. My husband had it the worst, next was Gabe with high temps and the big "D", then me with this feeling that I could vomit any moment, but never do and Boo being tired with an ear infection. Yuck.
Gabe is all smiles all the time. Even at a temp of 102 with diarrhea, he is laughing. The only signs he gave us were loss of typical appetite, runny stools and he felt warm. That's it. He was not sluggish, unhappy or tired. This only heightened my fear that Gabe could be very well "hiding" other illnesses. I heard someone say recently that if it doesn't bother him, like the bloating of his belly, it really doesn't need to be addressed. Again, I was flabbergasted at such an absurd comment. His reflux doesn't "bother" him that we know, he doesn't show any signs of discomfort, but it doesn't negate the fact that it was burning his esophagus every time it came up. That's why I kept at the GI doctor until he agreed to putting Gabe on Prevacid in order to protect his esophagus. With all the medical technology out there, why is it that doctors and specialists are so reluctant to use it?
I feel that I have to research what I think could be the problem with Gabe, then bring in enough research to back my claim, and then what I suggest the treatment should be. Does that sound right to anyone? Does anyone else feel that way?
Anyway, we have another appointment with the GI doctor within the next week and a half. If I do not get the answers I want, I will have to get another GI doctor. What just sucks about that is that they want to do the tests again under their supervision. I do not want Gabe to have to drink Barium again and also have the scope done in his Upper GI. I think that there are only a few things worse than watching your child having a medically intrusive procedure done before your eyes. I just want the reflux to stop, his belly to stop being bloated and to move on. Hopefully we get a better answer than "Some children grow out of it and some don't. " That sounds more like "I don't know what I am talking about so I will just blow this up your ass." Wish us luck.
Sunday, February 12, 2006
THREE WORD SENTENCES!!!!
They are as follows....
"There you go"- (Deeya Go!)
"Wait for me" - (Wahe me!)
"Daddy get cereal"- (Daddy geh cereeral!)
This is all from a child who was nonverbal/noncommunicative last June, only 8 1/2 months ago.
Way to go Gabe!
Thursday, February 09, 2006
Gabe is doing fantastic. He is flying through his ABA programs. They said that they only need to show him once and he knows it. Sometimes they probe to find he already knew what they were going to teach.I always assumed Gabe would be very smart and quick at learning new things. He comes from a long history of engineers, chemical and electrical. He was born to figure out how things work.
So, here are the milestones he reached for his age from nnnc.org. I found that the milestones from nncc.org were more thorough in explaining the various areas of development. I find it helps me to gauge where Gabe is and what we need to focus on when I can compare him to other children his age. In order to get the services I believe Gabe needs, I have to first know where he is falling behind, doing just great or maybe just needs a little fine tuning.
This is how I rated the skills
+ MASTERED SKILL
* SKILL EMERGING
- NOT YET
By 3 years of age does your child:
Gabe will be 3 in 2 1/2 months
+ Feed himself (with some spilling)
+ Open doors
+ Hold glass in one hand
+ Hold a crayon well (Tripod)
+ Wash and dry hands by himself
* Brush teeth on own
* Fold paper, if shown how
+ Build a tower of 4-5 blocks
+ Throw a ball overhead
+ Tries to catch a ball
+ Put on shoes, but not tie laces
+ Dress himself with help
- Use toilet with some help (He sits on "little" potty dressed)
* Walk up step alternating feet
+ Walk on tip toes if shown how
+ Walk in straight line
+ Kick a ball forward
+ Jump with both feet
* Pedal a tricycle
Sensory and Thinking Skills
+Recognize sounds in the environment
+ Pay attention for about 3 minutes
+Remember what happened yesterday
+ Know what food is and what is not
* Understands what "1" is
- Understands "now", "soon", and "later"
* Substitute one object for another in pretend play (Block as a car)
-Laugh at silly ideas (Like "milking" a dog)
+ Look through a book alone
+ Match circles and Squares
+ Match an object to a picture of that object
+Match objects that have same function (Cup and plate)
+ Count 2-3 objects
* Avoid some dangers, like hot stove/moving car
+ Follow simple one step commands (Can follow 2-3 step command)
Language and Social Skills
- Use 3-5 word sentences (Uses 2 word requests, some 2 word sentences)
-Ask short questions
- Use plurals (Dogs)
+ Name at least 10 familiar objects (He knows about 250+)
*Repeat simple rhymes (sings songs -clarity of words is about 35%)
+ Name at Least one color correctly (He knows about 5)
* Imitate housework or help with simple tasks
-Ask to use toilet almost every time
+Enjoys being read to
- Talks about feelings and mental states
-/*Demonstrates some shame when caught in wrong doing
(He will shuffle his feet, walking towards something he's not supposed to, occasionally looking back to see if we see him. Does not understand "No")
+ Try to make others laugh (He tickles our feet)
+ Defends his possessions (Only what he is playing with)
*/+ Play spontaneously with two or three children in a group (Pretended to be a dinosaur with 4 other children during playdate)
- Assign roles in pretend social play ("You be the mommy")
* Knows first and last name (Knows his first!)
- Understand "I", "you", "he","she" (I'm assuming-not sure-he uses "mine")
+ Believes everything centers around him ("if I hide my eyes, no one will see me")
- Answer whether he is a boy or girl
-He knows almost all 26 letters in the alphabet,but 2 or 3 letters.
-He can count up to 10, but knows the rest of the numbers to twenty but 11 and 12. He doesn't get why they aren't two-teen and one-teen.
-He can sing about 10 different songs.
-He knows about 10 different books.(He can "read" them to you)
Monday, February 06, 2006
In Gabe's last meeting at his ABA School, a discussion emerged about what our plans were for him after this program ended in August. I was thinking enrolling him in the ECDD Program(Early Childhood Developmental Delay) through our school district. The Behavioral Specialist that runs Gabe's school believed that Gabe would do great in a regular preschool with an aide and to look into that instead. Wow. I was in a daze. I felt like I won the lottery without ever buying a ticket. It seemed so out of the scope of where our hopes were.
"Now, how would that work?" I asked.
That's the most important question you need to ask yourself as a parent thinking of mainstreaming your child. Because, in the Special Ed. classroom, your child may be getting limited services, good or bad or both, but they are at least being overseen by someone with knowledge in the area of what your child's needs are, an aide could be anyone. Let me repeat that....ANYONE. They do not have to have knowledge about anything that applies to your child. Most do not have a background in Special Education or education for that matter. They are underpaid, no health insurance, no seniority. What kind of quality aide do you think you will receive from a school district that is floundering to stay out of the red?
Now, I know there are absolutely awesome, caring, very intelligent aides that bring wonderful opportunity with them and bestow it upon the child they help. I knew a few where I taught. BUT, those are few and far in between. I have taught in 3 different districts for close to a decade and most aides cared, but did not provide the quality help that a specialist could. Could I leave my son with someone unqualified in education AND Autism?
Yikes. I shiver at the thought.
Gabe's ABA School suggested that I find an ABA specialist to be his "shadow"/aide and have the district hire them for Gabe.
"What?" I thought. "How do I do that?"
Oh, the whole idea of me going to the School district and asking them to loosen the purse strings just for me, well...sounds a bit unrealistic. But, I'll try. Why not. Should be interesting.
Did I mention that Gabe has to be potty trained to attend most preschools? The ECDD Program he does not. He has shown interest, but is a bit peeved when I pull down his pants.
He looks at me like, "Mother! What exactly are you doing!?
He does not like to take his clothes off out of context. If it is not breakfast or dinnertime, or bath time, there is no reason that Gabe can see to remove his clothes. We have been instructed, through his school, to work on this. That means to strip him down a few times a day, whenever. lol Poor Gabe :o)
So, we will be looking into potty training in the summer. This fall, I think I will sign him up for 2 ,1/2 days a week through our school district's preschool, maybe they can hire me to be his aide (Hmmmm) and then he can attend the ECDD Program the other 3, 1/2 days. Not sure. That's the plan for now.
Now, that we are creeping up on attending public school, I feel more anxiety. I know the environment we are embarking on, I am crossing my fingers that it will be as wonderful as Bud's (Mom NOS). Those fabulously, awesome teachers are out there. I just hope we find ours.
Saturday, February 04, 2006
Here I go...one more time...but...so much wiser.
Friday, February 03, 2006
Here is my Pet Peeve #1
#1. Stupidity at it's worst about Autism.
The tilt of the head, the "Ah huh", the turn to whisper later about how she didn't see that much of a difference in my son, the look of sure..."Kids like him need all the help they can get", the shouting "Hi Gabe!" as if he is deaf, "Oh, I'm sure he is doing better," said with an unconvincing tone.
One of those people is my neighbor. She seems convinced that my son is somehow mentally inferior to her son and the entire NT world. He has Autism, that's it, nothing more. His future is still unwritten, there is great hope, as with any child. I hate it, I hate it, I hate it. I wish I had the nerve yesterday to tell her off. That her tone was hurtful. But, I didn't. I was slapped in the face between the "How are yous and What have you been up too." She is uneducatable about Autism and its effects on my son. She is uneducated. But, she was someone I thought before the diagnosis was a friend.
Sometimes I wonder if I am on the Spectrum, because I do not get people.
P.S. By the way neighbor, your son is short, waaaaaaaaay too short. See someone about it. See. I kept THAT to myself.