Pardon me while I rock and clap in the corner!

I am writing to you partly to chronicle the journey my boys are starting and partly to put off painting my bathroom. There. I said it. At least I am honest, right?

This morning Summy kissed me. I didn't ask, didn't beg, didn't try to make it into a game. I didn't mention a mouth, love, or anything else. One of our big goals for him was that by the end of therapy, he'd be able to initiate affection on his own. He started giving kisses a few months ago (you can barely stop Jack from kissing) but you really had to catch him in the right mood, when he was "focused in" and when the planets aligned. But today he grabbed my face with his chubby little hands and laid not one but 3 kisses on me. (One with tongue! LOL!) Before David left for work today, he ASKED him for a hug.

Jack's tolerating the brushing protocol better now because I made up a song so he can predict what is happening next. He gets really agitated when I brush his palms and feet so now I sing "tickie tickie tickie" when I do it and he laughs. (albeit squirms around like a madman because his poor brain is probably going bonkers.)

Sometimes it's hard for me to watch the therapy sessions. Part of our participation in this new study/therapy delivery method is a parent education component. We're going to continue this work during our "lull" with the boys. Sometimes I worry (HA! Sometimes?!?!?!?) that they didn't do enough, didn't get enough out of it, didn't comply enough with the OT. Sometimes I want to rock and clap in the corner because I see myself in my kids and wonder if I have sensory issues!

If two sessions and an evaluation/session have led to this much progress, I feel like the sky is the limit from here. I am so scared that some of these things will never go away. I've been scouring the internet looking for information about preemies and sensory processing disorder, reading studies on the white matter in the brains of premature infants, and worrying myself sick. (again, are you surprised?)

I just know that my little guy kissed me this morning and my heart sang. I kissed him back.

Thoughts on Therapy

I didn't know what to expect. The session I was in on yesterday was Jack's session. David reported that Summy's session went really well, but I felt frustrated watching Jack. He flitted from thing to thing so fast I wondered how much he was getting out of it. He kept telling our OT "no!" over and over. He seemed resistant, and I felt like he didn't get much out of it.

Then the boys woke up from their nap at 5 pm. Yes, you read that right. Actually, I woke them at 5! Jack was inconsolable. Our OT had warned us that it might be more like an unraveling before the process of reorganizing their little brains begins. For Jack, he was overwhelmed. We began the Wilbarger Brushing Protocol which has also overwhelmed Jack. Summy 1. Ate spaghetti with his hands for the first time in months 2. asked to swing. (He only swung for the first time ever a week ago 3. Sang at bedtime with us (He stopped singing a few months ago.)

I cannot believe it.

30,000

30,000 visitors. I cannot believe it!

Thank you!

Diagnosis

After our meeting today we planned out the therapy the boys will begin tomorrow. They have both been officially diagnosed with Sensory Processing Disorder, I'll let wikipedia say it best:

Sensory Integration Dysfunction (SID, also called sensory processing disorder) is a neurological disorder causing difficulties with processing information from the five senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SID, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SID; the difference is that information is processed by the brain in an unusual way that may cause distress or confusion.

SID is its own diagnosis, but it can be linked to other neurological conditions, including autism spectrum disorders, attention deficit disorder, dyslexia, Developmental Dyspraxia, Tourette syndrome, multiple sclerosis, and speech delays, among many others. The meaning of SID falls under the DSM-IV criteria for Asperger syndrome. [1]. There is no known cure; however, there are many treatments available.

Diagnosis is increasing by developmental pediatricians, pediatric neurologists, and child psychologists. While it is not included in the American Psychiatric Association's Diagnostic and Statistical Manual as a discrete diagnosis, Regulatory-Sensory Processing Disorder is an accepted diagnosis in Stanley Greenspan’s Diagnostic Manual for Infancy and Early Childhood and the Zero to Three’s Diagnostic Classification.

Sumner is a classic avoider and Jack is a combination seeker and avoider. We begin groundbreaking research by a local practice tomorrow that will give the boys a new therapy delivery system of bursts of intensive therapy, followed by lulls. The belief is that with the intensive delivery of therapy, they won't need a "booster shot" for a long while.

I am a whirl of emotions. It breaks my heart to see Summy alone, lying on the floor playing with his truck, or scared to swing or slide, or pacing a "loop" to calm himself. I was so scared he was on the autism spectrum. While this diagnosis is like a huge light going on, it's also a scary thought: SPD is not yet "officially" recognized as a diagnosis for insurance purposes. (Go HERE to sign the petition!)

And then there's Jack. Our little Jack who has flown under the radar since we got his feeding issues "under control." I watch him fall a million times a day, get hurt over and over, and not be able to stop himself, or really even have the fear of the jeopardy he puts himself into. My heart breaks again.

I cannot wait to see my boys on the other side. We will evaluate after the therapy burst for the other issues going on which will wait to be addressed (gross and fine motor delays, and speech delays for Jack) All I can tell you is that after the week of evaluations, during our time especially spent with "Cake" as the boys lovingly call her, Summy went down the slide for the first time ever. He shook, and looped, and did all his calming behaviors, but by golly he did it.

A weight lifted, a weight added, but such is the life of a parent.

We also found a (used) swingset for the boys tonight. We hope to move it in the next week or two.

Because it makes me happy.

Evaluation Update #2

I don't want to get into too much detail until we know for sure, but the boys went through round 2 of evaluations on Wednesday. We're hoping for a big meeting Monday to discuss the results of possibly both sets of evaluations, which we are still waiting on. We might begin a new program as soon as next week. We're really excited and have seen some real progress, even in the last week. The best news is that they don't think Summy is on the autism spectrum. I cried the whole way home from the evaluation on Wednesday, I was so happy.

As soon as we know more, I'll let you know!

Today is also David and I's fifth wedding anniversary. It's so hard to believe how much our lives have changed in amazing ways in the last 5 years. I am so lucky to be married to someone who always supports me, through and through.

An award and a meme

Last week, my sister in law tagged me for the Crazy 8's game, but I am just now getting around to it! Sorry Alana!

The rules:

1. Mention the person who tagged me.
2. Complete the lists of 8.
3. Tag 8 more bloggers and tell them they've been tagged.

The lists:

Eight things I am looking forward to.
1. A long, relaxing summer
2. Insight into my boys' needs
3. A hopeful vacation
4. Time to read, time to clean the house, time!
5. Time with friends
6. 4th of July, Papaw, and fireworks.
7. Living in this beautiful new house
8. A new idea/prospect

Eight things I did yesterday.
1. A class through my district
2. Created 6 new lesson plans
3. Mediated my boys and DH, who had driven each other crazy in my absence.
4. Read part of The Woman in White
5. Ate pizza, a rarity in our house
6. Chatted with friends
7. Planned decor in my house
8. Slept!

Eight things I wish I could do.
1. Have more answers
2. Have more sleep
3. Have more energy
4. Have infinite patience
5. Be on summer break longer
6. Exercise more
7. Have more time to blog

Eight shows I watch.
1. Intervention
2. Grey's Anatomy
3. House Hunters
4. The Soup
5. American Idol
6. 24
7. ANTM
8. Millionaire Matchmaker

Eight favorite fruits.
1. Apples
2. Raspberries
3. Grapes
4. Watermelon
5. Oranges
6. Kiwi
7. Banana
8. Strawberry

Eight places I'd like to travel.
1. Tahiti
2. Tibet
3. Alaska
4. Spain
5. Australia
6. Italy
7. France
8. Egypt

Eight places I've lived.
1. Columbus, OH and surrounding areas my whole life! SO boring!

Tagging:
1. Annie
2. Danica
3. Amanda
4. Allison
5. Cassie
6. Sarah
7. Elyse

I also won my first blog award! Thank you Allison!!!

The guidelines for this award are:
1. Put the logo on your blog or post.
2. Nominate at least 10 blogs with great attitude and/or gratitude. Be sure to link to your nominees in your post. L
3. Let your nominees know they have received the award by leaving them a comment on their blog.
4. Be sure to link this post to the person who nominated you for the award.

My nominees are:

Alana at Alana-isms

Busted at Un-Busted babymaker

Annie at Santiago Twin Girls

Elyse at Following Him

Debi at Who says 8 is enough?

Pam at Pyjammy's Blog

Marie at Thornhill's Triple A Team

Rachael at Little Bites of Heaven

Sara at Mommy of twins...

David and Sandi at Fighting Maturity

Followup to my previous post

Thank you so much for your kind and thoughtful responses. This has been a very emotional week for us as we spend time with the boys 24/7 and really see where their areas of need are. It has led to an emotional week for both David and I.

I want you to know the evaluation went so well. As Sarah so aptly put it in her comment, they were able to show exactly what they could and could not do, so that they may be able to receive the help they need. They were not completely able to finish the evaluation and will be out Wednesday to finish. We eagerly anticipate their feelings on where we'll go from there.

We got news today that the boys might be accepted into a breakthrough new intensive program for children with sensory needs here in our county. We don't know a ton yet, and another set of evaluations will take place next week, but as soon as I can share more information about it, I will. We're hopeful, prayerful, and excited.

Please add us to your prayers, that this all works out for us. Please pray that we may be able to clearly see how to help our boys become the most they can be. Thank you for your continued love, it means so much to have supportive people who love and care for the boys as much as we do! (And us too!)

Evlauation tomorrow

The boys have their evaluation tomorrow with the MRDD/Help me Grow people. I am excited and nervous to hear what their thoughts are. Summy has come to the forefront in my concern list because of some of his sensory issues. Sometimes I feel like I can't get through to him, or understand him. I am so scared that there is more "wrong" with him then we know about. I am so scared that he'll have trouble down the road making friends, or being social, or just connecting with others.

It's not often I voice my fears and frustrations, but my friend Stacy really has me thinking. I am angry that I was told my preemies would "catch up" by 2! I am angry at myself for not being able to carry my boys longer. And I'm even more angry that she had to stop blogging because she is speaking out about it! She's championed informing preemie parents with some really eye opening scientific data that shows just what prematurity can look like: down to the difference in preemie brains. She's also afraid now to post because of backlash from medical professionals, and possibly parents who don't really want to hear the truth. What do I tell my mom when she says "yes, but they'll grow up and be just fine, normal." Will they? Honestly? Do we even understand that "normal" might ever be for a preemie?

Would Summy being full term have prevented this? I ask myself that every day. Will therapy work? Will they ever "catch up" or will it just be less noticeable. Did my choice to undergo infertility treatments, more specifically IUI, contriubute to the possibility of prematurity? How is it possible I longed for a baby for SO LONG and in my own selfishness of trying to get pregnant, could have put them at risk? Would my placenta have abrupted either way?

I'd love to hear your thoughts on this, readers. Prematurity is on the rise. It's not going away. I wish I knew what to do about it.

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Graduation!

Yesterday my little sister graduated summa cum laude with honors from high school. I couldn't be prouder of her! Next year she plans to attend a local art school where she got one of their top scholarships!

Here are some pictures from last night. I also got two GREAT shots of the boys. Awesome shots I love so much!!





My beautiful boys





The boys barely made it through the ceremony. Each graduate got to pick any teacher k-12 they thought influenced them to give them their diploma!

Multiples and More giveway!

Enter to win an amazing craft box to keep your kids busy all summer. Enter here!! http://multiplesandmore.blogspot.com/2009/06/sponsor-spotlight-kids-busy-box.html

Marseilles Dress SHABBY APPLE GUEST GIVEAWAY!!!!

Marseilles Dress SHABBY APPLE GUEST GIVEAWAY!!!!

Giveaway!!!

“Bring Nature to your backyard… win a Nature Station Playhouse ($249.99) at http://www.mommasreview.com and http://www.aordinarylife.com”

Summer has begun!

Today's post is brought to you by two of our favorite foods. I'll let the pictures speak for themselves, and trust me, dear readers, they speak volumes.

Favorite food #1: Cheese!




Favorite food #2: Suckers!




Few things bring joy to my children like cheese and suckers. Also high on the list: balloons, elmo/cookie socks, loveys and pacis when we are tired, and the ice cream truck. (Also known in our house as the "sucker truck.")

Thursday's visit went well with our new EI Teacher and Case Worker. A full scale assessment will be next Thursday and the visit a few days ago was primarily for paperwork to get us "into the system" and so they could re-write a new IFSP for the boys (like an IEP for kids younger than school age.) All went well and we look forward to more insight on Thursday.

Last day of school!

Today was my last day of school. Every school year seems to go by faster and faster. I actually cried because our fifth grade class is so wonderful, I am really going to miss them. Today I realized it will be Jack and Summy walking down that hall someday. That makes me so sad too!