Don't Worry, Be Happy: a Mantra for IEPs, Kindergarten Transition, and IQ Testing

I've been doing a lot of reading, thinking, and talking to others about Sean's big transition to Kindergarten next year. I mean, jeez, it is only nine months away. :/

I'm trying to get myself in a head space where I'm not stressed about it any more than I was when Aidan started grade school, but it is hard. There's so much information out there about getting your child in the best environment for these early learning years. We all want our kids in the least restrictive environment so that they can learn along side their peers. We are all afraid of our kids being shut away in a room without windows, stimulation or teachers eager to help our child achieve at the best of his or her ability. We worry about abuse and neglect of our our sweet kids that can't defend themselves or verbalize the accounts of the day. So many of those fears seem valid and important to look out for.

This past week, the big news in the Down syndrome world was a report on possibly reversing the cognitive affects of Down syndrome. Research with lab mice have shown that the therapy plan may help our children with Ds if started at a very early age. Interesting possibility. Obviously one that needs a great deal of research regarding long term outcomes before it is applied in humans. I'm happy to hear that there is research that focuses on improving the LIFE of a person with Ds, rather than focusing on eliminating the existence of Ds. Should it prove to be effective and safe for humans, I think I'd be willing to try it. It doesn't change the make up of the person, it just helps boost the brain's ability to learn and retain information. However, I don't see that it has said if it would work on older children or if there's a window where it is only useful. Definitely research worth following.

So that leads me to this.... what do I want Sean to achieve in kindergarten? I guess I want him to have the best opportunity to learn that he can. I want him to speak clearly in full sentences that others understand as well as family. I want him to read and write. I want him to carrying on conversations that are not just repeating statements or yes/no answers. I want him to understand basic math skills. I want him to learn to button his shirts, zip his coat and tie his shoes. I want him to eat what his peers eat, and eat it willingly and independently. I want him to play with other children and be welcomed in their activities.

Do I think all of those goals are attainable? Yes. I do. I don't know if Sean will achieve all of those goals by the end of kindergarten. Some I expect will be more challenging and take longer. I don't know if this means he's in the "regular" classroom 100% or 80% or 50% of the day. I see no benefit to him being in a classroom if the pace is too fast for him and he isn't adequately supported to adapt to the activities. I don't want his time wasted at school because he is overwhelmed and shuts down. I'm willing to keep an open mind about where he is as long as he is learning where he is at.

Yesterday, Doug, Ella and I went to Aidan's Thanksgiving Feast. This is the school we intend on Sean going to. As I was clearing my tray and leaving the cafeteria, I saw the resource room kids clearing their trays and lining up for recess. I admit to staring at the three kids with Down syndrome. Watching as they independently sorted their trash and trays. They looked happy, the boys were laughing and tickling each other in line. The little girl was intent on scrapping her food into the can. But where were their parents? None of the kids in the class had parents that came to eat with them. Why? The school sent notes to us, so we knew when to go. Of the other classes, it looked like about 40% had parents or grandparents eating with them. Yet none of the kids in the resource class had a parent there.

Panic. Maybe the Special Ed teacher didn't send the invite home with her students.

Worry. Is this an example of how communication is lacking here?

Reality. Maybe they just have to work or have other kids at home and can't come. It's probably a coincidence.

Jennifer at Three's a Charm shared this post this week and I am trying to keep my mindset here instead of in a state of stress. I think I will just read it every time I start to worry. You know, this should be my new mantra, "Don't Worry, Be Happy."

Santa, I wanna pony!

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"When it's Time to Change..."

"You've got to re-arrange..."



Sean is sounding much much better today, but I'm going to keep him home one more day to rest. So, I'm thinking about using my extra time at home to update my blog with a new background. Hope I find something new I love! It is a chilly winter-feeling morning outside, I feel a change coming on!

"Mommy, do I have Down syndrome?"

Aidan and I were out running errands one day, just the two of us. I love having little solo outings with each of the kids. On this particular one, Aidan suddenly asked me, "Mommy, does Ella have Down syndrome?"

"No, she doesn't."

"Mommy, do I have Down syndrome?"

"No, Aidan, you don't. Just Sean has Down syndrome."

"Well, if i don't have Down syndrome then what do I have that makes me special?"

Oh, Aidan, my sweet son! There are so many things about you that make you special! On this day, seven years ago, you made me a mother for the first time. I was so excited to become a mother, but so nervous as well. I waited for you and wanted you in my life so much. Every day that you grew in my tummy was a blessing and I prayed for you. Your daddy and I couldn't wait to meet you. We had no idea how much you would change our lives and give it new meaning.

When you were born, we both cried tears of joy when we saw you! So beautiful and precious. We felt like you were a missing piece of our hearts that we found. You brought us together as a family.

As we watched you grow in your baby months, we got to know you and your showed us so much of your personality as you grew. Your sense of humor was obvious from an early age, the way you laugh at our silliness. Your determination was strong, the way you worked so hard to learn new things. Your strong love and attachment to us was amazing and so powerful.

In your toddler years, you continued to make us laugh, make us proud, and fill us with love as you explored your world. We loved sharing new experiences with you and seeing things through your eyes. We got to see you form a bond with your baby brother.


As a preschooler, you amazed us with the new things you learned and details you paid attention to. You made your own friends, showed us how independent you were becoming. You have so much joy in sharing things with your brother.


Now you are a big kid, going to school all day, creating a life away from us. We worry about you and pray for your happiness. We are so proud of all that you can do and the sweet person that you are. You are such a great big brother to Sean and Ella. You have so much patience for them and include them in what you like to do. We love watching you teach them new things: songs you learn at school, games you like to play. We are so excited to see you reading and love to listen to you as you read to your siblings.

Aidan, you are so special to us because you are YOU!

Sean has Bronchitis with a side of Croup!

Yesterday, Sean woke up from an afternoon nap with a raging fever (102.8) and labored breathing. At 4:30. On a Friday. I called his Pediatrician and quickly said, "My son is Dr. U's patient, he has Down syndrome, a fever of 102.8 and is having difficulty breathing. Can Dr. U see him today?"

Within a couple of minutes, Dr. U was on the phone and asking me a couple questions, then asked me to hold the phone up to Sean so he can listen to him breathe. I got back on the phone and he said, "I'll stop by after I leave the office and look at him." Total benefits of living right next to your Ped!

Dr. U came over around 7 pm and was surprised to hear that it came on so sudden. He said he sounded like he was a week and half into bronchitis. He suggested we give him Motrin/Tyenol for the fever and Robitussin for the cough to try to loosen up and make it easier for his lungs to expel. He gave us his cell phone number to call if he got worse.

At 3:30 am, he woke up struggling to breathe. We gave him more Robitussin, Motrin, and then did an albuterol treatment with the nebulizer. He fought the meds and that made his breathing even worse. Of course all this woke up the other kids (oh, and did I mention that my sister and her 2 sons are visiting this weekend for Aidan's bday? Um, yeah, they woke up too.) Anyway, we got it done, settled everyone back down to bed and tried to get some sleep. Only Sean didn't improve. So at 4 am we decided to take him to the ER. Mind you, he wants MOMMY. Oh, and DADDY. And Ella is still running a fever and nursing and not about to sleep at home without me. So the four of us went to the ER.

Sean had a chest xray done, lab work drawn, was given an epi shot and breathing treatment, and was started on an antibiotic. Bronchitis, with a side of Croup for one, please.

We got back home around 6:30 am and got a couple hours of sleep. Sean still sounds rough, but at least we have a treatment plan in place. I hope the meds make him feel better soon. Thank God my family is here this weekend to help with the other two! Aidan slept fine the rest of the night with his cousins and they've been great at keeping the healthy ones busy while Sean gets his snuggles. My sister made a great breakfast for us, so I'm going to grab a bite. Soon Nana and Papa will be here, too. Just hope no one goes home with a bug!

*P.S. Dr. U took a look at Ella and she sounds clear and her ears are clear, so hopefully she doesn't get this too.

*P.P.S. Some may remember me waffling about our first pediatrician we had here. She moved her practice this past summer and I made the decision to split with her and go to Dr. U instead. SUCH A GOOD CHOICE! Couldn't be happier with his service and personality.

Sympathy Smoking, aka Fun with a Nebulizer

Aidan's had a wet cough this week so we've been giving him breathing treatments to help his lungs. He isn't really sick enough to miss school (eats fine, no fever, no achy feelings, no congestion) but since he has Reactive Airway Disease we keep an eye on his breathing should it turn to something worse. He is such a trooper about getting his breathing treatments because he knows how much better he feels after wards.

When Aidan was 2, he was sick with what I thought was just a chest cold. I noticed he was wheezing so I decided I'd better take him to the doctor. Our regular doctor was out of town, so he saw one I'd never met. He didn't even need to listen with a stethoscope, he saw Aidan's chest retracting and clearly heard the wheezing. Our doctor's clinic was connected to the hospital, so I again had the experience of a doctor scooping up my sick child and carrying him to the emergency room to be admitted. He was hospitalized for several days with severe bronchitis and on breathing treatments every 2 hrs around the clock, plus steroids and antibiotics. Sean was just a few months old at the time, and our heads were pretty foggy still, so it was a shock to be in the hospital with our "healthy" child.

I stayed with Aidan, pumping milk to send home with Doug for Sean, and fought tears while I tried to get Aidan to do the breathing treatments. He was terrified of the noise the machine made, and the mask, and of being restrained for 30 mins each time while taking the medication. I had respiratory therapist try to show me ways to tightly pin him in my arms so he wouldn't pull the mask off. It was so exhausting and painful. When he was well enough to go home, we had to continue breathing treatments with a portable nebulizer 4x a day. Luckily, it wasn't as loud as the hospital one. We managed to slowly get Aidan more comfortable with the treatments by using those times as our TV times. One Bob the Builder episode was long enough for one treatment. When we had to do them at night, I'd hold him and tell him a story to pass the time. He loved for us to tell him stories, real and make-believe, and it would distract him from the treatment because he couldn't hear my story if he was crying and fighting me. He decided to call it "getting special smoke" when he was a toddler and we still call it that.

So here we are, five years later, and he does them without a problem. He even asks for them when he is feeling bad. Our biggest struggle now is keeping his siblings from unhooking the tubing! As you can see, they decided this morning to play with the spare equipment and keep Aidan company during his treatment.

Wordless Wednesday: Big Brothers, Little Sister