Thursday, January 28, 2010

preschool and SID.

Terrified of 'exposing' Coy to excessive or unwanted germs, we have thought little about putting him into a MDO/preschool program.  The thought of Coy in an environment with group toys, snotty noses, and accidently shared sippy cups was enough to send me into a panic.  However, in the past few months, I've come to the conclusion that I can't live 'in fear'...constantly worried about him getting sick or what would happen if ______ .  And, knock on wood, it seems as though the less I've tried to 'control' things, the healthier he's been. 

Of course, I'm not saying that I knowingly bring him around sick people or don't clean his hands or just quit being sanitary.  No way, Jose!  But I do believe he needs the social interaction of his peers, he needs to be around kids his age.  There is no doubt in my mind that I have some PTSD-effect related to Coy's NICU and my hospitalization that contributes to my hyper-sensitivity of 'germs'.  I am not the innocent mom whose thinking is "nothing bad will happen to my child".  But I do trust in God and I do know that he didn't give us this miracle child to hide him away from the world and live in constant fear and worry. 

With the help of great therapists and physicians, it has become more and more apparent to us that Coy does have some level of Sensory Integration Dysfunction.  Basically, his brain has trouble processing all the stimuli that he's exposed to every second of the day.  The symptoms can be much like that of a child with ADHD (hyperactive, unable to focus).  I recently read that SID has been labeled the 'hidden disability' because until it is diagnosed, kids seem as though they are badly disobedient.  Effects of SID include doing poorly in school, having low self esteem, emotional problems, and social isolation.  Of course as parents, we hear that and want to do everything possible to avoid the bad outcomes and give Coy every advantage we can. 

One of the reasons we've decided that a MDO/preschool program would be beneficial is due to Coy's delayed speech development.  He does say some words and is making progress, but he does have difficutly with his motor planning.  If we ask him to repeat a new word, he'll stare at our lips and then in frustration he'll scream or say 'dada'.  The problem is not that he doesn't understand what he just heard....his comprehension is spot on.  The problem is that he can't figure out how to repeat what he just heard.  Along with weekly Speech therapy, we're hoping that attending a MDO program will help his language development.  Being enrolled in MDO will also (hopefully) help us be prepared for adjustments that we'll need to make to get him ready for Kindergarten...i.e, sit in the front of the room, walk in the front of the line, special education, etc.   

So, where I was going with this whole post was that I recently toured a preschool program and thought it was a great school.  I am asking God to lead me to the right school for that will understand his needs and help him thrive.  SID is not a well known nor well understood disorder by many....and my concern is that he will be over-looked or misunderstood.  It will probably kill me to drop him off the first couple weeks, but I know that I can't and wont be able to protect him his entire life (although I will be trying to, I'm sure).  Chris and I have had converstaions about this and he heard a great quote recently that stuck with me, "You can't prepare the path for the child, but you can prepare the child for the path."  Very true. 

And I know that ALL children develop at different rates and levels.  And I do appreciate the kindness is behind the stories such as, "my kid didn't speak until 3" or "don't worry, he's normal hyperactive 2 year old."  Unfortuantely, we can't sit back and wait and see if he is or is not 'normal'.  We have to be aggressive and proactive as much as possible.  But I do sincerely appreciate the love that you blanket us with to keep us from worrying or freaking out. 

Now, I'm still learning all about SID and if I've misspoken about anything, feel free to correct me.  I'm trying to take in all the info I can.  I feel very thankful that Coy has the best OT (occupational therapist) and works very hard for him.  She has been a blessing in our lives and I'm confident that she'll help Coy deal/overcome this challenge. 

Thanks for all your continued love, support, and prayers.


Stefan said...

You may be interested to check out the Free Sound Therapy Home Programme available from Sensory Activation Solutions. Their Auditory Activation Method builds on the pioneering work of Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training) and has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

There is no catch, it's absolutely free and most importantly often effective. Check it out at:

Misty Mac said...

Hey AM- As you know, sweet Brody has issues as well and has had several hospitalizations over the past and a half. He is enrolled in a preschool program and I shared your EXACT same conerns (germs, will they understand he is different etc.. He is doing SO well there...he loves it and his teacher has been wonderful. We are just extra careful of the other children and do not stay when someone looks sick. I will pray for your comfort in leaving him as it was much easier for me when I began leaving Bryce. The world is becoming SUCH a more understanding place of children who are "different" and we can only thank our precious Lord for that! xoxo misty

Connor's Mom said...

I will be praying for you and Chris with all the upcoming decisions that will need to be made. Y'all are great parents. I know you'll choose what's best for Coy.

Hilary said...

Coy is a lucky little boy :) Nothing wrong with wanting the best for him....hope that the school work out for him :)

abby said...

I think you are doing the right thing by searching for the preschool environment that is best for Coy. I'm sure you know that we're in a similar boat--Hallie has a lot of sensory integration issues (we blogged about this a while back) and between OT, an EXCELLENT school, a caring aide, Floortime therapy, and supportive parents, she's making so much progress. The past year, in particular, has been an amazing one for her and we are grateful that we were able to find the services she needs. Not everything is perfect, (nothing ever is), and she's gotten sick more in school than she did at home, but everything has been manageable and we are grateful that we have traveled down this road. You and Chris are wonderful parents and I am sure you will come to the right decision and find the right place for Coy and that he will continue to flourish.

amyoutlaw said...

Oh, I think what you're doing is such a great thing for Coy. MDO is a wonderful way to get them "socialized" for many different reasons. One of the boys in Julian's playgroup had SID or some form of that and did everything that you mentioned and he's benefited so much from his mom's intervention. She was definitely proactive. Even putting him in speech therapy up to 3x per week. All the while, she was caring for a new baby like you. She's on the other side now and life is great!

Life in the Kerlee Household said...

Ann - You are an amazing mom. Coy and Cydney are very lucky to have parents like you guys. It's great that you are being proactive on getting him into the necessary programs now and not doing the 'wait and see.' I agree, it's hard to figure out if this is the normal for their age and they all develop at different ages but having preemie's makes the concern more of an concern because we don't know if it's something to do with prematurity. I put Jaymin into a montessori preschool when he was alittle over two. It as the best thing I did. He needed the social interaction with other kids, he needed structure (different than home type) and he learned so much more than what I could provide (being a stay at home working mom is hard!). I pray that you find the best fit for not only Coy but for you guys. Just be prepared that within the first few weeks he'll likely get a cold. It's just the breaks of the game.

Anyway, I thought you would be interested in following another family who had a 24 weeker. She is a friend of a friend of mine. Truly amazing. I'm still in awe over Coy and his story. He's is such a miracle. Anyway, the blog is

Take care. Tracey