Wednesday, August 8, 2007

Speech and the Waiting Room

I had my first experience of being in a waiting room with other Mothers while my little guy was off having his evaluation. A very kindly woman approached me and we were soon telling each other about our lives. I guess I had told a few tell-tale signs and she soon became very quiet and looking very concerned.

"Uhm...Er...does your son have a diagnosis?" She asked looking very troubled.
"Yes, he has autism."
"Oh thank goodness!" She says with a huge smile.
"Pardon?" I asked with a mix of confusion and irritation.
"Well you said a few things that made me think he was but I didn't want to say anything in case you hadn't gotten a diagnosis or didn't suspect. He is still very young and a lot of kids don't get a diagnosis so early." She was rambling on very quickly to explain that she was glad I knew, not glad of the diagnosis itself.
"Oh yeah I already know." I couldn't help but laugh.

She then tells me about her son and his condition and we share our thoughts and speculations about what is the reason that it seems certain people are prone to have children with disabilities. Mind you these are only speculations and observations and I won't list them here because none of them are based on fact.

We enjoyed having another adult to talk to that was not a husband, therapist, or doctor. Someone who had some idea what the other was going through and was not going to judge the others child.

After awhile I see him coming down the hall holding the Evaluator's hand totally ignorant that I was even nearby. When he does see me he immediately starts trying to pull this woman, his new playmate, back to where they had come from and away from his boring old Mother. He doesn't take long to come to terms with the fact that the fun is over and his new playmate has to give me a report of how he did. He sits on my hip quietly, forehead on my shoulder and squeezing my arm, while the evaluator tells me about words he said and things he identified. She tells me about oral motor exams and motivations and her words are partially lost to me. I closed my arms around him to reciprocate the squeezes as he rubs his nose on mine and wraps his arms around my neck.

Seems our small time apart from each other did us both some good.

Tuesday, August 7, 2007

The things people say

There was a time in our lives that we thought things could not be better. The day after my youngest daughter's seventh birthday we were blessed with a bouncing baby boy. Two beautiful, wonderful girls and a beautiful boy, our family was complete. My young mothers in training were in awe of him and I in them. They were so gentle and caring.

Blissfulness and glee came to a screeching halt just three short weeks later when their perfectly healthy brother left us for no reason. Our family and friends rallied around us, but they said things that I think must be ingrained in human DNA. Things that force their way from our mouths when we don't know what else to say.

"God doesn't put anymore on us than we can handle"
"You can always have another one"
"You didn't have your tubes tied did you?"
"He is in a better place"
The grand prize goes to my cousin "Hey, wassup?"

I may sound like an ungrateful person that these things irked me so. I do know they were meant to be words of support, caring, and love and I genuinely appreciated the gestures. But surely you can see the flaw in all the statements when said to a bereaved Mother.

Three years later in an attempt to fill my aching arms, we had another bouncy baby boy and though it was a very happy time it was also a very nerve racking one. It was bliss like before but laced (or laden) with fear. Poor thing was not left alone for a minute without someone checking that he was still breathing.

We got past the three week mark and the fear started to ease a bit, a microscopic bit. I started noticing as he got older that he was not like the other babies I had raised. He would not make eye contact with me while breastfeeding. He would look at me while I talked or sang to him but only if I put him in his carrier. He would not sleep laying flat on his back in his crib. He had to be wrapped tight and place at an incline in his carrier well past the swaddling stage. Vacuums scared him terribly and I think it was the main motivation in becoming mobile. When he got to a point where he could sit in a highchair he started to laugh hysterically for no known reason.

Even though babbling and some words cropped up they were lost soon after and I struggled to find out why I couldn't get this boy to talk. I let denial that anything was wrong keep me from really questioning the pediatrician that told me "Each kid is different, he will start talking in his own time." Or the dentist's wife "His sisters talk for him right now. He will talk when he needs to."

He was two by the time we started getting any services and four months from his third birthday he was diagnosed with Autism. Not many of our family members or friends rallied to our sides this time. My Mother, his father, and my sister were about it. Maybe it's because I could tell by the looks on some of their smug faces at family gatherings, that they thought my son was a brat and I had let him go wild. Maybe because they don't understand what Autism is. Maybe they just don't know what to say.

Sunday, August 5, 2007

I have never been a great housekeeper. I do try my best, but gleaming surfaces and sparkling windows most often do not occur in my home. Add this to the fact that I have two teens girls that try to avoid chores like the plague, my husband is at work most of the time, my Mother has been spotted putting things under the sofa cushions, and my son is on constant seek and destroy mode. Well you can see how I have a recipe for constant pig sty status.

I am lax about some of it. Fingerprints on glass doors seem to not bother me much while I am cleaning an entire bottle of chocolate syrup off of a desk and my son. Dust on a overhead light goes unnoticed while I clean lipstick, butter, or similar substance smeared on a bedroom wall. Even chalk on the wall will be left unchecked while I put furniture back in it's rightful position or pull a toddler down from standing on the window sill, showing the neighbors that he now knows how to undress.

So when I bought an expensive sheet set this past week, first time in 15yrs not opting to get the less expensive sheets from Big Lots or Walmart, my Husband looks at me like I was insane.
"So how much were those?"
"Uh, they were on sale."
"Uh huh, you know they're white and will be ruined in less than a few days."
"I thought they were cream when I bought them."
"They're nice though aren't they?"
"Yeah, just a sort of treat for the end of the day."
"We should lock him out of here so he can't mess them up."
"You mean like the door handle cover we already have on the door?"
"We should try to find something else then."


So what else do you try? We have the knob covers the cabinet locks, and the drawer thingies. We put things way up high. He figures it out or catches a teen or elderly person slipping. I am wore out from the day of cleaning and catching the toddler Houdini. I slip into bed and the sheets are cool, clean, and crisp. They feel so nice to compare to the usual threadbare, washed twice today, see through sheets, that the half eaten cracker under my pillow barely registers.


Midnight snack anyone?

Saturday, August 4, 2007

Children songs now rated PG13

My little guy is very speeched delayed. He can say lots of words in form of identifying and in form of mands (asking for something), he can say some sentences or fractions there of, but these sentences are very new to the equation and are for the most part echolalia. I have sometimes wondered if he doesn't have apraxia, as sometimes he opens his mouth to say something and his tongue will not cooperate and just shoot back and forth in his mouth.

We had a wonderful OT until recently, her services had to end because Connor turned 3 and was no longer eligible for her program. She is very tactile defensive, so it was very funny to see her with my very tactile/sensory seeking son. But she came up with the best ideas. I suppose maybe she did this going off of what she herself couldn't stand. So when she said during one of her visits,
"I would love to see what he does with a vibrator in his mouth."

I have to admit that my first reaction was one of shock. So she explain to me that she was talking about a zip vibe, which is sort of like a battery operated toothbrush but has rubber tips he can bite on instead of the brushes. This was intended to make him more aware of his jaw muscles and such. Well this worked but a little too well or maybe my timing for it was all wrong. Long story short he had to bite something and when biting his own leg didn't produce satisfactory results he bit into a bar of soap. Chaos then erupted for a big part of the night.

We have since decided to stick with more low key tactics. Even though he does have a touch screen and programs he loves along with PCS cards and such, he loves music. He especially loves children's songs where you either have to do dances or hand gestures while singing. (Itsy Bitsy Spider, Wheels on the Bus, etc.) He can only allow one person at a time to sing with him, any intruder will find a little hand over their mouth. If there are more than one intruder on the sing-a-long he will flee. As has been the case at every birthday party so far. Hubby hasn't been allowed to join in on the singing very often, because he either doesn't know the right words or he messes up the hand gestures.

Last night as Hubby was lying down, Connor came in to play. He takes Hubby's head in his hand to make sure he has his attention.

"Asses?"
"What buddy?"
"Asses?"
"Uh..asses?"

Connor starts to jump on the bed and taking big bounces he sings as loud as he can.

"Asses, asses, we all fall DOWN!"

Friday, August 3, 2007

Forget and let forget




The morning started of great. Connor was awake and singing in his bed. I got up opened his door and told him "G'morning" otherwise he would stay in there all day. I go to the kitchen and coffee is already waiting on me. How heavenly! I peek out the side door and see Hubby is outside making his morning calls telling everyone where to be and when. Probably outside so to avoid having each person sernaded. I call down stairs to the teens and tell them it time to get up. The eldest has to get ready, today is freshman registration. Hubby is done with his calls and comes back in.

"She's getting ready now." I can tell as soon as the sentence comes out of my mouth that he has forgotten.
"!@#$, I can't believe I !@#$*% forgot! I have a contractor meeting me in Indiana in 30 mins!"
"Does she have to be there? Can you drop off the papers and pay the fees?"
"Yeah I'll do that. Should be ok right?"
"We can only hope at this point. You did remember his speech evaluation is at 2?"
"Yeah I will stay here and do paper work till you get back"

The problem was solved for a total of 10 minutes.

"I'll have to come get you two and drop you off to do this. Have the younger teen keep an eye on Connor. They have this long line and a 12 step process and I will be here all day. Besides they have to make her an ID."

He drops us off at the highschool where we grab her schedule and wait in an ID line for an hour. Where it becomes pretty obvious she forgot to brush her teeth. Then we pick up books, locker combinations, handbooks, and pay fees for Orchestra, honors classes, art/photo club, and various other stuff, which turns in to a small fortune. We then find the classrooms for each period; 2nd floor, 1st floor, 2nd floor, 3rd floor, 1st, 3rd....
"Mom you think they did this on purpose?" She laughs.

Hubby picks us up and I am annoyed yet again. The viola he was to drop off to be strung and tuned, that cost three times the amount I just gave the school, that was handmade with inlay, that is sensitive to humidity and cold alike, is in the bed of his truck!

1:30 rolls around and Connor and I are on our way to his speech evaluation. He is always happy to be riding in the truck. We get there and sign in and he is very excited, it is the same building OT is in and he knows the next hour will be all about him. The receptionist calls me over while I wrestle with a toddler that is dying to run the halls at top speed.

"He has a speech evaluation?"
"Yes"
"Uhm... it isn't today."
"Really, you're sure?"
"Yes, Ma'am. It is on the 7th. I can understand how 7th and 2nd sound alike though."
"Thank you."

I then have two challenges in front of me. One this little boy is very upset that there will be no treatment or new toys played with today and he is now clawing, pinching, and kicking. Second is the dear man I have been a snippy b*tch to today over things he has forgot or overlooked.

I finally get Connor in his carseat and bribed to remain in the belt correctly, using what little ABA I have in my possesion. We head off to the grocery to pick up a few odds and ends and to take him somewhere instead of straight home which would cause more meltdowns. As we pull into the parking lot he starts chanting "Cookie, cookie, cookie"

We gather what we need and little guy is being a model citizen and I see it the
most perfect thing that says "I am so sorry. I have been an ass. Please forgive
me and please don't make any snide remarks."

Oh and we got the cookie too.

Thursday, August 2, 2007

To Be or Not to Be, and Other Questions

Little man has been without "Official" treatment from a therapist most of the summer months. Having turned 3 in May, he was ceremoniously release from the early development program of the state and we had been on waiting list for a couple of different centers or therapist that our insurance will pay for while I do floor time, speech, and occupational therapies on my own.

Hubby has been trying to keep up to date on everything going on but has a more than full time job. It is there for that sometimes he can blow things out of the water without even a second thought. He is has had to take off early so that we can take Connor to evaluations for OT (we finally came to the top of the list) since I wrecked my van in Jun, and everyone in the known world is on turtle mode so I have yet to get another form of transportation. He decides he can take him to the eval and first treatment himself so I can get a break. My break is there for filled with telephone calls from hubby to get more information that is requested from him.

As early as last December Connor had very few words, very nonexistent eye contact, and rarely responded to his name. He didn't pretend play or even parallel play with other children. All of this was true in Jan when he was diagnosed. He has made remarkable progress since then and is very chatty, responds 75% of the time to his name, seeks attention, has a few 3 or more word sentences, sings songs, and the list goes on and on. He isn't anywhere near up to par with his NT peers of the same age but still it's gives us alot of hope that communication at least will improve to a point that we can have a back and forth conversation with more than 2 exchanges.

So when hubby came home from the first appointment with OT he had loads to tell me as most of the treatment session was another Q and A with the new therapist. First was that Connor remembered which rooms had the toys and wanted to go there so was a tad fussy at the beginning. Cool!

Second was the therapist said he was not as profoundly autistic as the rest of the patients. Great, but seems like a weird comment. Maybe it's just me.

Third, she says that if he continues to progress he could lose the diagnosis of autism in lieu of ADHD in a few years time. WTF?!

I instantly had visions in my head of the woman in the garage being told she needs a new engine when she came in for an oil change, or the Mother who pays loads of cash to the coach that insists her kid could be in the Olympics, or peddlers of snake oil to cure any and everything. I am fuming at this point, how dare she tell this gullible man, who only wants the best possible for his son, that in a few years time he may not be autistic!

I want to call her and talk to her about this. I want her to tell me her qualifications and motivations to make such a statement. How long has she been a therapist? How many autistic children has she treated and how many children has she actually seen this happen too?

Then the thought occurs to me that I know nothing at all about ADHD or how serious it can be. It just seems that short of life threatening diseases and more cognitively depriving conditions, almost anything is better than autism.

Wednesday, August 1, 2007

The Day No One Predicted



We packed up all our supplies, separated into our separate vehicles and left early in the morning. Mom and the eldest teen girl with me. Connor and the younger teen girl with hubby.

Before we have left the city my Mother has found a huge flaw in my list of packed supplies. I have neglected to take any hot wheels with us so we stop to purchase more. We reach the marina after much anxiety and squeaks from my still traumatized daughter anytime a car gets anywhere near ours.

Hubby has beaten us there and I find the younger teen girl and the boy already on the boat. He looking a little wide eyed but after we give him his cars his settles on to the floor to play. So far so good.

It started off a little tentatively, but he adjusted like a champ and to my great relief when the boat moved he did not. We fished and he smacked the water with pole or loved on Grandma's feet. It was the best fishing experience she had ever had, even tho she never got the first fish.

We swam, or I should say the girls and I did. Hubby and Mom stayed on the boat. To my huge surprise every time we tried to get Connor into the water he would scream. But he loved waving to us, saying "hi" and throwing objects off the boat to watch us chase down. Luckily the only things he threw off were of the floating variety.

At the end of the day he got very chatty and keep telling us "Water!" He did get a little irked when I asked him "Where?". He finished the day with eating a good dinner which is a rarity for him.

I know hubby made sure that if anything happened he would be on top of it. It made everyone's day that much better that I could relax a bit. What a great man.