I really do feel like people are starting to listen. She had to do a re-evaluation today, for insurance purposes & I know Jen has gone back and forth during our year together on her opinion if DS will qualify or even NEED speech after EI is over. After my huge list of concerns about two months ago, she finally agrees with me. It was just great to hear those words come out of her mouth. I feel a little bad for celebrating, but it's not the difficulty itself I am celebrating - it is the hope that someone has listened and WILL continue to help!
Bottom line, he's got qualitative differences in Sensory Processing, among other things listed here.
All the way around, it was yes.
Yes. Motor Planning
Yes. Bilateral Coordination/Crossing Midline
Yes. Tactile (this is the mildest)
Yes. Fine Motor
Yes. Low Tone
We got our FULL evaluation & I am very pleased. I am not pleased that DS has these difficulties - I would gladly take them all away and give them to myself if I could - but the next best thing is Knowledge and good hard WORK.
I feel like I ALMOST understand all of this, and where we're headed with it. But she really perplexed me too (below).
She did a very thorough eval. She explained things to me well, explained her plan of action - which doesn't have specific written goals as of yet because she wants us to find the top 2 items we feel are his biggest concerns this week and she will go from there. The good thing about a good OT is that they are fully capable of incorporating multiple issues at the same time. But, she wants to get the ball rolling as fast and furious as we can because we have SO LITTLE TIME.
Why? I didn't think we had so little time. Come July, I thought the plan all along was to move directly from EI to Private OT, even though it would mean a bit of a drive.
So, when she said that - my antennae went up and I asked her if she felt he was a good candidate for continuing OT in the private sector after July 3? I kind of understand what she said, but I still feel really uncomfortable about it. She said that most kids who's parents are ACTUALLY following through with them only really need either 'tune-up' appointments to discuss progress and implement new techniques or maybe monthly check-ins. The parents who don't follow through - end up with kiddos who need more therapy. I felt a little KICK in the GUT when she said that. But, on the other hand, once we implement a plan - a sensory diet, etc... for him.... maybe we WON'T NEED weekly OT??? I think I am just confused. I plan to ask more questions next week.
Thoughts from those of you with GOOD OTs in place?? DS seems to have quite the load of issues to be addressed. He turns 3 on July 4. That gives us 5 more one-hour sessions.
IT. WENT. FABULOUS.
I really had a good feeling about this, and I was right!!
She had her kit of 'standardized' testing, she had the sensory profile - which she went over with me bit by bit. She observed, asked questions, explained why something was good or concerning. She wasn't afraid of using the 'bigger words' with me, always stopping to explain.
A big difference between her and the other OT's we have tried to work with, is her expertise and experience with Autism. OT's work with SO many different types of issues, that it is hard to find the right fit. From our hour together, it seems that she is very on top of her game.
....and she found stuff no-one else has too. He is 'low tone'. I am certain this will take some time to process exactly to what degree & I don't fully understand it, but she saw quite a few things that fit:
1. He props constantly
2. His shoulders are 'shrugged' all the time
3. He lays on his back with 'frog legs'
4. His thumb flexes WAY futher than it should
5. He has a weak grip/grasp
6. Hunched/Rounded back
7. Couldn't even do ONE partial sit up - he was asked to place a puzzle piece at knee level (lying down) and all he had to do was lift a tiny bit to do it - but he had to roll to his side.
There is so much to work on, it is almost overwhelming. But I am just glad that we are getting the help he needs still early on.
Next week, she's going to continue more observation & talk through my list of concerns after she sorts through all that she 'tested' and observed today. She wants to see him a few more times and get a good chance to get to know him better before completing her review. I thought that was a wonderful idea.
She was so apologetic that we didn't get a useful/competant evaluation the first time around, and was also fairly surprised that no-one had addressed quite a few issues with me.
When I get the full report, I'll be sure to go into greater detail... but the evauation today cites difficulties in the areas of:
Bilateral Coordination/Crossing Midline
Tactile (several things never addressed before, though I was surprised)
Fine Motor/Grasp (other than writing; again surprised)
There are quite a few things that I enjoy about standardized testing! :-) It is always a great thing to see your child EXCEL! She said that he set her record for the YEAR for a 3 year old: writing, using a 2nd grade level tripod grasp, and stacking blocks (12 tall). He also gave her the 'tour' (if you will) of his cognitive processing.... She asked him to 'write his name'. So he wrote 'N A M E'. She got a good kick out of that! Then, learned to rephrase. That's my boy!
Even better: I got the call that the 'Out of Sync Child on video' is ready for me at the Library. I requested it via:Interlibrary Loan a while back & now I can watch it and process things even better.
Hey - our team is FINALLY complete!!! We now have competent Speech, Developmental, Occupational, Service Coordinator, and Preschool Coordinator.
And it only took us 11 months and 12 days.
Today we meet Dawn.
I have read everything I think could possibly help, filled out a sensory profile, and have some lists ready with behaviors/concerns. I have prayed that this one will be the right fit for DS. I am a little on edge that she will meet us AND evaluate on the same day, but as long as she is a good listener and a good professional - there shouldn't be a problem. DS is very OBVIOUSLY experiencing issues with sensory regulation. I just pray it is revealed and maybe he'll actually give her a display to observe as well. We've had the TV on today, Natalie came this morning & he won't get a nap before she gets here --- so we're well on our way to some Sensory Overload anyway....
Writing in the Air
Running into mirror/people
Throwing self onto floor/pillows
Falling off couch
Rubbing eyes constantly
Over Sensitive to Light
Biting Jaw constantly
Water on face = Smacking Face
Can't stand tags
Shoulders Tensed up
Loves upside down/swinging
Runs until he bumps
Fidgety/Can't sit still
Fingers in mouth
Didn't like to straddle
~Bilateral Coordination (proping)
~Motor Planning (2 feet on steps, clothes on, throwing, jumping)
~Vestibular (much of above list)
~Proprioceptive (much of above list)
~Picky Eater (? just to mention, not a huge deal)
~Self Help - Shoes, Clothes, Jacket, Stool, Potty
What we're doing
Heavy Blanket (nap)
Being Mommy is something I wasn't always so sure I wanted, sitting in my college apartment nine years ago. I remember sitting on the hardwood floors of the hallway talking to my roommate - wondering how you know that you really want to BE a mom.
Then, after my husband and I were married, we had 'the list'.
All the reasons why we didn't have kids - or weren't having kids. We were on the 'Five year plan', five years and then we'll THINK about it. We used to say that as long as the cons side of the list was longer than the pros, we weren't having kids.
And then one day... I heard a preacher on the radio. I sat in my car long after the engine was turned off just to hear the last words he had to say. It was ever burned into my mind that the blessing of having children would mean that there would be another generation to teach, raise up in God's Word, and lead away to spread the good news of Jesus Christ to the world. It was that day I knew. I have always been thankful that God allowed me to hear that message before finding out that I was pregnant with my little boy. From time to time God allows that message to come back into my mind.
"Train up a child in the way he should go,
Even when he is old he will not depart from it."
I am SO blessed with exactly what He knew I needed.
.....A Humbling experience, yeah, He's given me that. Something to bring me to my knees over and over again - I think all parents get that -not just those who have children with special needs.
.....A Beautiful Boy to teach me how big and wide and deep the Father's LOVE really is. A child who holds a future that is important, beautiful, extraordinary, and totally out of MY control. A child who takes my breath away, takes every ounce of energy, but I still cannot get enough of - so that at the end of the day I just want to crawl next to his bed and kiss his worries away over and over...
.....A Beautiful Girl to show me how beautiful differences can be... how to capture each first like a camera lens in my mind and enjoy it with fullness. To give a sparkle to laughter and tears to the tiniest bump in the road. A child who encompasses joy, real joy in the smallest of things. Who stands strong in her will, yet crumbles at a kind word and a tickle. A child who greets each new day with a beautiful smile and intoxicating giggle. And who makes me long for night to end and morning to begin again...
But not only did he give me two totally different children, He gave them to me in a perfect order... A boy first - one who captured my heart in a moment. One who requires a little more time, a little more patience, a little more give. But - I didn't know I was giving a little more.... so my second, my girl just makes me marvel at tiny minds and miracles - instead of having that opportunity to question. I have thoroughly enjoyed. Laughed a lot. Cried a lot. Loved beyond my hearts measure. Blessed beyond anything I could have ever prepared for myself.
HE knew. HE knew this is the plate I would be given as a mom. Yet, each moment that seems too difficult, also shows me a new reason to believe. Because around the corner of the difficulty is provision. He has provided.
BEING a mommy wasn't ever a choice. It was all in His plan. Being is more so a state - I just AM a mommy. It isn't something I wake up and choose each day, I just am. He carries me through it, I just pray that I continue to open my ears and listen for what He has prepared for us next...
What exactly is Pronoun Reversal? At what age is it appropriate? Is this advanced Echolalia? Does this fall under another category? All of my examples are daily occurances. He always says things this way.
Example of a phone conversation....
Me: 'Tell Memaw you love her.'
DS: 'You love her.'
Example of Potty Training conversations....
Me: *checking the diaper*
DS: 'Do you have gas?' (HE was the one passing gas)
Me: 'All done potty, what's next?'
DS: 'Wash your hands and dry your hands' (should've been 'MY')
Example at Mealtime...
DS: 'Are you eating cereal and milk?'
Me: No, YOU are eating cereal with milk.
Example of daily events...
Me: What did you do today?
DS: 'And we play, and we sing, and we readin' books.'
DS: 'Mommy, can I kiss your boo-boo?'
Me: 'Where is my boo-boo?'
DS: 'On your foot' (holding his foot up to me)
I would love to see all that happens inside my son's beautiful mind. I mean, I am totally perplexed on a daily basis with what he comes up with.
Today he wanted Chocolate Teddy Grahams. Well, we have Honey flavor, but I've never had Chocolate ones. I am certain he got that gem of information off the box. He would not listen to my explaination, so I wrote him a note: "Mommy has zero
Chocolate Teddy Grahams. I am sorry."
I handed him the note and a pen, thinking maybe he would write me a note back. (What was I thinking???!!!)
This beautiful artwork piece, of which I can see multitudes of numbers, includes 100, 300, 400, 500, etc.... Not an ounce of scribble on this paper... all numbers.
Is this obsession?
Is this communication?
Is this going on in his head constantly?
Is he trying to tell me something?
Is this his version of play?
The Amygdala is on avg. 13% larger in toddlers with autism who have problems with joint attention. Interesting....