Sonism

Speaking to his little friend who is over to play, he says, "Lets go to the ABC store to buy some more things we can play with, it's for 99 cents, ok?'

He cracks me UP!

DS came RUNNING into the room to request a pen. This happens all the time, so I just looked to make sure he had paper and handed it over. About 5 minutes later, I walked over to redirect him to something OTHER than writing and this is what I found.....

Appropriateness score:  60 year old woman


Funny score: Off the charts!


Note to self: Don't leave the TV on something other than PBSkids when I'm not in the room. Notes for old lady pills will follow.

black & white

June 28 I wrote a list of all my concerns and things I knew DS needed to work on for the IEP.

Jen told me last week that it is time to reassess his speech goals. When she says that, I know it is my job to be on top of what I know, so we can work together in our expertise.

So, I pulled out my handy-dandy list.

It has only been 4 months since I made that list.
Right there in black & white I can see his progress.

✓ Done
✓ Mastered
✓ Emerging

✓ Will respond to choice questions without any echolalia.
    still having a hard time with the choice, but not echoing our questions!! 
✓ Will request "more" without prompting consistently
✓ Will use pronouns I, me, my, you, your correctly in conversation
    very much improved, still not 100%
✓ Will protest words other than "no", such as "I don't know" or "stop it"
✓ Answers/Understands Wh Questions (who,what,where)
✓ Make Observations in environment
    much improved, especially with sister
✓ Respond to greetings appropriately
    much less delayed, more appropriate
✓ Express/Respond to Thank you/Your Welcome/Excuse Me/I’m Sorry
✓ Asks for help from others appropriately/offer help….

The list is much longer, and there are still plenty of things that need work. But just LOOK at those improvements! 

Sonisms

I will coin the word 'sonism': [suhn-iz-uhm] something my son says that makes me burst into laughter and be rendered useless as a parent who then determines she cannot punish him because the 'ism' was just too funny.


Example #1: DS likes to ride his scooter and park it up under the bar. Baby girl has shown him that it also doubles as a nice stool, which he can use to get into everything sitting ON the bar. It is automatic time out if you are caught standing on the scooter. So, tonight he was standing on said scooter and I had to ask him, 'What are you standing on?'
To which he responds, "The Promises, Mommy!" 


♫ Standing, standing..... standing on the Promises of God my Savior... ♫


Example #2:  I have been trying really hard to explain the difference between when his underwear is wet or dry. I have him touch them so that he can feel it and then we discuss. There is a LOT of potty talk around here lately. So, when he got up from nap, I asked a very normal question "what is in your underwear?". Usually the response is 'Nothing' or 'I don't know'.  Well, this particular day, I pushed him because I thought he had peed. I forgot to ask if he was wet or dry. So, when I asked, "What's in your underwear?" 
He responded, "My Butt"

Preschool Reflections....

Is it really almost October?  
[I started working on this post September 28] 


DS started preschool the first week of August. His first quarter is over. Today is our first day of track out and I have both my babies and nowhere to be for the first time since June 18th (I just looked it up). We had 'happy face' pancakes (among other healthier options) for breakfast, played, and just enjoyed our day. No major meltdowns by either child or myself. Both kids are gloriously SLEEPING at the moment.... and I am writing in my PJ's at 1 o'clock in the afternoon. I do not feel bad about this at all!


It has been interesting. 


For the first 4 weeks of school, each morning was a struggle to get him out of the car and into the school. I have to carry baby girl into the school too, and so when he tries to run away from me or lay on the ground instead of going in (its about a 20 yard walk) it is very hard for me to 'control' the situation. In the afternoons when I picked him up, he was sweaty, red faced, disheveled, and generally agitated. He only wanted to exit the school from one specific door. He couldn't handle if I was there before he left the playground. He refused to eat breakfast [in class] with the exception of a couple of mornings. And when I picked him up, he whined to me 'I want to go home'. 


12 kids are in his class. All have an IEP - yet I do believe they are a wonderfully diverse group of kids of whom MOST challenge him socially. I believe this is the #1 reason for all the anxiety. And it's a good reason. This is the first time he has been challenged in this type of environment. 


He did surprise me, though. In the past, it would take him several visits by a new therapist, etc.. before he showing ANY of his negative stereotyped behaviors or difficulties.  My prediction for school was that it would take him a couple of weeks to show anxiety and behavioral issues. It took all of ONE day. I guess 3 hours was enough.
I was told (multiple times, but mostly by his DT) as soon as he was challenged to do some things he couldn't master immediately or any sort of demand was placed on him, I would no longer be able to question the Autism and negative behaviors would ensue. That is and was and continues to be true. 


I have gone from constant questioning of whether the oddities of his development were explained by autism (prior to the IEP)... to a better understanding of autism in general... to a better understanding of my son, period. I listened all too many times to the tune of 'your child isn't severe enough for services' & 'autism, you're crazy' & 'he won't always be on the spectrum' & 'he's just smart'. 


Well - he is NONE of those things. He is wonderful, bright, awesome, intelligent, genius, beautiful, has autism, funny and ALSO has a future. There is no question. He is not the poster-child, especially a media born one... and there are certainly parents who deal with a lot more than we do... but I am making progress through the 5 stages of grief. I do not grieve my son. I grieve what I thought being a parent meant. It is a wonderful and horrible and eye opening experience. And it is necessary. It will eventually work it's way into my unwaivering knowledge that THIS is so much better than what I thought, but I'm not there quite yet... 


Denial: believing that he would somehow jump himself right off the spectrum after we fixed him. 


Anger: I'm not an angry person, so I believe this to have played out in my anger towards those who wouldn't believe me and didn't support us. 


Bargaining: What therapy, what is perfect, what can I do to get him off this spectrum. What will fix it? Is it autism, is it hyperlexia, what best explains away everything? maybe it was birth trauma... maybe we're wrong... maybe if I tell no one, it'll go away...


Depression: .....for me I think manifests in my sadness when the differences between Neurotypical and ASD stare me blankly in the face. These moments come and go. I think it's normal. I think it's a process that has to happen. I don't like it. 


Acceptance:  not there yet

***********************************************************

...back to preschool

At the same time he was pent up with anxiety from all the work at school... he was doing new things at home. During this first quarter I was happy to post quite a few successes and awesome things happening with him. There were certainly others - new words - new questions - a new level of play with his sister - some potty success... etc. And I was SO confused. 


How is it that he is so ridden with anxiety after a day at school, but for the first time EVER finds the words to ask me to snuggle with him and hold him? How is he doing so BAD and so GOOD? 
One call to Suzanne helped to explain. He IS learning some really important stuff at school, but it IS really hard. So, it's both. And there lies the behavioral stuff that has surfaced. 


At one time I might have told you that we are just beyond PECS and a lot of intervention techniques that a lot of other kids need. But, what I have found is that there is a really fine line between being supportive and asking too much of him. So, we went back to some more basic supports.


I am still trying really hard to figure out that line most days... but we have implemented a potty PECS routine and a hand washing PECS routine in the bathroom to help him be more independent as he works through the steps. It also helps mom keep her sanity so I don't have to pick a fight over putting pants back on (or whatever it is that he decides that he's not going to do) constantly. 


When the first 4 weeks of school were done, he really loosened up. He is still very challenged, but more directable. Some changes over the quarter:
Once aloof during rug-playtime (usually up staring at the room calendar) - he is now attending to parallel play for an increasing amounts of time. 


He is wearing undies to school on a regular basis. He is not bowel trained in any capacity, and is fully prompted to toilet, but it's an improvement. 
Much improved demeanor during school and when I pick him up. More often than not, he started telling me that he didn't want to leave school. 


[fast-forward to Oct 25]
His 3 week break is over. We've completed his first week back to school. This has been the best week yet!!! I am so happy to report that he acts as if he really missed being there. He has communicated well, played well, and listened well. He does have some of that anxiety back that he didn't have (shrugging shoulders) before, but he is also challenged in his classroom again. I think it's working.

MRI & EEG results are in

MRI is normal. EEG is abnormal. Nothing physically wrong, but neurologically, his right temporal lobe has periods of lower functioning. She said the 'slowing' w/o physical evidence of damage [via MRI] shows her that he basically is at a higher risk of seizure, but no guarantee & it more likely just paints a picture of what we already know. Some of the difficulties of Rt temporal lobe dysfunction would include: 1) disturbance of auditory sensation and perception, 2) disturbance of selective attention of auditory and visual input, 3) disorders of visual perception, 4) impaired organization and categorization of verbal material, 5) disturbance of language comprehension, 6) impaired long-term memory, 7) altered personality and affective behavior

Hey. That fits.

I really loved the neuro. She explained everything in plain language. Did a thorough exam, and took time for us to explain 2 situations in which we felt he really may have had a seizure. She agreed they concerned her, but since she doesn't see permanent damage, she won't be interested in a longer (48 hour) EEG unless he has another episode that is concerning including no arousal from physical touch. That all made me feel better.

And, to top the cake with a cherry, she is very interested in further autism research and will keep his 'case' open in the event there are any breakthroughs with research pertaining to genetics, brain studies, etc... She said that if they find out anything groundbreaking in the near future, they likely have all the info they need, and just don't know to look at it. So they would use existing data first.

The last thing she is going to do is get the genetics testing back from that hospital and make sure they did/found what she would have sent out for. Since he had ear tags, they look to see if there was any genetic reason for him to have a mutation.

Sounds thorough to me. She put to rest some of my questions including the possibility of brain damage from birth via vacuum. She said his brain is HEALTHY as it can be and there is no sign of ANY damage of ANY type from fall, bump, etc..

Quick Hit: Clocks

So, round about noon today, I learned something new about my boy.

I'm fairly certain it will explain itself.

DS: "It's 12 o'clock"

Me: "Yes it is, look at this clock, it says 12 o'clock too"

DS: "No. That's 11:58"

Me: "uh...................................You are absolutely right!"

I'll Love you forever, I'll like you for always...

As long as I'm living, my baby you'll be.

I guess you don't really wake up and expect a miracle on a miracle day. The day is going as it usually does and I suppose miracles usually just sneak their way in....

I own the book 'Love You Forever', and it has always held a special place deep down. I think most mama's have a bittersweet taste as they read it, and I imagine most don't read it without a box of tissues handy.

But for me, it holds an even more special meaning. When I pick up my boy and rock him back and forth and back and forth and tell him I love him forever and like him for always..... he really does have to be really asleep.

He is so sweet and shows me in many many ways that he loves me. But, not by holding me. He never has. As my first child, and a baby, I never understood why I couldn't carry him on my hip. If I tried... he'd just hang off. He would never put his arms around my neck or even just grab my shirt or arms. I can even remember the last time I tried to snuggle with him. We used to always lay on the couch, snuggle up and watch ELF when he was tiny. But as soon as he had a little mobility, he would arch away. As he got older, we noticed he yelled when we tried to hug him in bed or tuck him in or especially when silly mama tried to sneak in bed and snuggle. Then, one day we gave him the words he needed, "I want to sleep by myself.' Which was a blessing, even though it stung a little to hear it every time I got close. He knew what he wanted and could express it.

Baby sis has moved back in the room with Big brother. We needed the office space, so coordinating naps has been a challenge. She went for her nap first, Big Brother was reading his books, and I was feverishly working on a new reward chart (stickers for 'good choices', subtract stickers for 'bad choices', and 8 stickers = 15 minutes on PBSKids.org) so I could show it to him and get him working towards 3 stickers if he made the 'good choice' of staying in bed. He seemed excited...

And then....

.... he grabbed my hand, "I want to take a nap, Mommy" and led me to his room.

"Well, ok, you can take a nap... make sure you use your good choice and stay............... "

"can I snuggle?" He grabbed me around the neck with both arms, holding on so tight, like he would fall if I even moved a muscle. "can I snuggle?"

"Yes, sweet boy, I'll snuggle with you"

"ok, mommy"

I layed on the bed in tears as he gripped around my neck and twirled my hair. I tried to pull away at one point, "No, hold me."

I didn't even know he knew to say that....... I continued to lay there as long as he wanted to hold me. After about 10 minutes, he moved to the side - flipped onto his belly, "You lay beside me." ....and then he fell asleep.

My incessant sobbing kept making him jump and Baby Sis reposition in bed, so I thought I'd better leave. But I could've laid there FOREVER.

I KNOW that God is working on me... teaching things through my children day in and day out.

"Those who sow in tears

Shall reap in joy.

He who continually goes forth weeping,

Bearing seed for sowing,

Shall doubtless come again with rejoicing,

Bringing his sheaves with him."

Psalm 126:5-6

Lord... you have my attention.

Thank you for being in control and not me.

Thank you for the hard places....

I hurt at times

But You always show me

why it's so silly to

be sad over the creation

you have placed in my care.

The deepest things I have ever felt

YOU have shown me.

Thank you that no one else can take

credit for the miracles You perform.

My HOPE is in you Lord

My STRENGTH is in you Lord

My LIFE is in you Lord.