Maybe something else?

if you see this.. please keep us in your thoughts and prayers. There is something else to add to Myra's diagnosis, but I can't face even writing it yet. My poor little girl.

Behavior Plan

Yesterday was the first day of Myra's new behavior plan for school. She has a few things that she needs to do, like keep her hands to herself and tell the truth. When she does those, she gets a 1. When she doesn't, she gets a 0. the day is broken up into one hour (i think) chunks. She was Soooo excited and still is. When she reaches her goal, she will get to have lunch with a teacher of her choice. Please keep us in your thoughts and prayers. We know you can do this, Myra!

Update~!

Myra is 7 and in 2nd grade now. She is having a very hard time in school. She cannot keep her hands to herself, she cannot control her impulses, and she bullies on the playground. She is extremely bright, earning 100's in almost everything she tries. She reads at a 3rd grade level, has an immense vocabulary, and loves numbers and spelling. When it comes to social stuff, however, she is not up to her age level by any stretch. She cannot make friends very well. When she happens to make a friend, she cannot keep it. Her 5yo brother has now passed her in social skills, with his aquisition of a best friend. This widens the gap and makes everyday life that much harder for her. We are looking into a further diagnosis, as SPD doesn't seem to explain all of her behaviors. I'll keep ya posted!

An overview.

When she was a newborn, and wouldnt nurse, I was terrified.She hated to be held, was obsessed with ceiling fans and water. Preferred her stroller over being "worn".

 When she was one and couldn't walk, I was bewildered.

When she was 2 and eating slugs, I was embarrassed and confused. We started therapy for motor delays (large and small) and I was told, "Maybe this is as good as it is going to get."

She turned three and started behaviors that were typical for kids with sensory processing disorder, like chewing her nails, self stimming, refusal to come out of her imaginative world, and I was doubtful that I could handle this, that I could raise this little girl. I began to try to fix all of her problems, make her outgrow them faster.

Then, at the end of her year at Head start, the school behavioral psychologist sat down with us and told us that our daughter had moderate to severe Sensory Processing Disorder. That THIS IS WHO SHE IS.  It's not something we can make her outgrow. This is Myra. I was crushed. The inability to make friends? The need to eat paint? This is MYRA? The Psychologist talked about needing to accept her as she was, and stop trying to "fix" her. "She's not broken," they told us, "Everyone is different. This is the kind of different that your precious girl is." They emphasized helping those around her to understand her, rather than forcing her to conform to those around her.

When she was 5, she started kindergarten. It was a long, embarrassing year for both of us. She did not have the social skills necessary to properly function in a regular ed class, but i was unable to get her on an IEP. She ate playdough. She self stimmed at circle time. She put her hands around some kids neck. She cut another kids hair because he reached in front of her during art class. She almost got sued because she wouldnt stop loving on some little boy and his mom freaked out. It was a horrible year.

Myra turned 6, started summer daycare. At first, these behaviors continued... but then, around august, something changed....

She started 1st grade on a 504. For the first 2 months, we went to countless meetings trying to hash out details. I was worried because the school wouldnt provide what Myra had needed last year to be sucessful, and her teacher was unyielding and very strict. I worried and worried. But ya know what, its worked out okay. Myra only self stims in her own room. She doesn't eat paint anymore. She is learning to keep her hands off people. She HAS FRIENDS! Myra still has SPD and will always have it. But she has been maturing at a very rapid rate and has begun to adapt. I am so proud of her!

All of this is becoming easier. I dont freak out anymore if Myra does something "off" for kids her age. Yes, she prefers her pretend friends to real friends, still. But she will play with real friends when the opportunity presents itself. I look back at how scared I was when she was 10 days old and I realized something was "different" about her. Yes, she's different. But she is smart, caring, courageous, loving, happy.. She keeps reaching outside her comfort zone... She reads at a high 2nd grade level. She cares for her brother as a mama, sometimes. :) She's not perfect, of course, but she is MYRA! My precious miracle.

Twas the night before Christmas....

And Myra has night terrors! Accck!! They happen when she is overly tired, eats shortly before bed, has a sensory underload or overload day, is in pajamas that bug her or half a dozen other reasons. They are frustrating because she is still asleep so she can't be reasoned with. I just comfort her until she goes back to sleep. I think the extra excitment is doing it for her tonight. Myra can't sleep at all if left to her own devices. She takes 9mg of melatonin per night, about a hour or two before bed. This is pretty common in kids with SPD... the insomnia is common, that is.. Anyway...
 Okay, so I have been asked how skating went. And.... drumroll please..... she... LOVED IT!!!! AAAAH!! When i went to pick her up from daycare, I was handed the outer layer of her clothes: socks/pants/shirt that were soaking wet (yea for layers) but she was jubiliant!  "Mom! I did it! I love it! Just like you did when you were my age!" I had shared with her that I had loved it when I was little. I find that if I share a story that coincides with something she's experiencing, and that story is from my childhood, she takes heart from it.  I told her about the skiing lesson my parents paid for, and how i cried through the whole thing because my nose was cold.  We giggled and problem solved (maybe a nose warmer that looks like Rudolph).. etc. As Myra grows, this whole thing becomes a tad easier.

Ice skating?!?

Today, as I was dropping Myra off at daycare, I noticed that today's field trip (lots of them since it's winter break in her school district already) was for a local bouncy house place. Yippee! I knew she would love all that sensory input. I gladly signed her up and paid the 5 bucks... because, actually, you have to, since there isn't staff left at the daycare to watch your child should she decide not to go on a field trip. Dangit...

Then I looked at tomorrows field trip. Ice Skating. Double Dangit. Myra tried Roller skating this summer and due to her lack of vestibular balance and poor motor skills, it was a disaster, and she HATED it. I knew that if one added cold to the mix, she would DEFINITELY be out! I checked with the daycare.. no way that she could stay behind. I made a couple of quick phone calls for alternate daycare arrangements, and found one where she could go.. they would be caroling, but at least on solid ground. The only downside.. she HATES that daycare.  There is a kid there with Down's Syndrome who always pulls on her clothing to try to get her to play.. because she's one of the only kids who is somewhat near her level... and Myra can't get her to stop and neither do the teachers. And for those of you out there with a kid with SPD, you know how they freak out when someone pulls on their clothes.. it's really nerve wracking.  So tonight, I told Myra about the ice skating. And as predicted, she pulled a face and said, "Ugh, I do NOT want to do that!" I told her about the alternative, and didn't even mention the child involved. She asked what daycare the alternative was at, I told her, and she immediately said, "No, I will try ice skating." Tells you how frustrated/powerless she feels at the other daycare, which, mercifully, I only have to use on Saturdays once in a while.

So, to get her ready for this massive undertaking. First of all, its great news that she even wants to try. Shows you how much maturing she has done in the last few months. So, its my job as the mom to set her up for sucess. Which in this case, there is going to be a lot riding on... the outfit. Yep... what she will wear. Okay... So first, I will pull out her snow gloves, since the first time she falls and her hands touch the ice, she will not be able to handle it. Once her hands get cold, she starts screaming... apparently there is a horrible bone ache/burn/fires of hell feeling... I dont really get it, but I understand. Okay, check.. gonna throw her brothers pair in her backpack discreetly in case hers get ripped or whatever... the daycare can throw his on her hands and I'll buy him more later. And a hat, that stays on her head but doesnt bug her with elastic or ties.

Secondly, what she will wear. I know she needs her knees well covered, but i dont have knee pads; and I know she'll need some pants that tuck well into her skates so they dont bug her by bunching around the ankles or drape over her skate and cause her to fall... SPD kids HAVE to be able to see their feet at all times...  And if she just wears jeans she will get too cold, but if she wears fleece pants or sweatpants, they'll get wet and she'll be miserable. I dont have snowpants, nor the means to fork over the money for them, especially considering she'll wear them once, maybe twice before she outgrows them. We just dont get snow around here much. I think I will send her with leggings on underneath (stretched tight so there will be no wrinkles of course) and skinny jeans on over that. 2 pairs of undies and 2 pairs of socks, the former to eliminate her rear getting too cold and the latter to stop the skates from rubbing on her toes or ankles.

The shirt(s) are easier. She has tons of sensory friendly shirts, so I will just layer a few of them and put on a warm coat or sweater on top that has narrow(ish) wrist openings so no ice chips or wetness will find its way between the gloves and her sleeve to her skin.

Whew!!! It's 1 am but I think I finally have everything pounded out. I will toss a thermos of something warm in the backpack and an extra change of clothes for as soon as she gets off the ice, as well as a couple of those hand warmer things where you pop the thingy and it gets all warm for like a minute... the daycare will appreciate these if she happens to get her hands cold (God forbid!)

This is typical event prep for us around here.... it's life though... :)

Baaaack!

Sorry its been so long. Things have been crazy. So Myra is now in Kindergarten. Fully mainstream. She is struggling with behavioral and sensory issues, but not enough to get her an IEP, so says the IEP team during her eligibility review in February. She is 6. Myra reads at a second grade level, does math at a first grade level, and writes just a tad below her grade level. I attribute this to her low tone in her hands. Its not affecting anything enough to get special services for it. Myra is struggling to understand non verbal cues from other children, and to keep her hands to herself. One step at a time! Alrighty, talk to you all later! :)
Emilee