Lesson Learned

Tonight I was taking a stroll down memory lane and reading some of my very first blog posts.  To be completely honest I was hoping for some inspiration for tonight's post and I found it.  I found a list of 21 things that I have learned from having a son with Down syndrome.  I started to rewrite the list but seriously this list is as true today as it was 4 years ago. OK I'll admit I fixed a couple of typos and tweaked a few thoughts but the overall list is the same.  

Riley has taught me some big lessons.  I bet you have learned a think or two from him as well.  Just for fun leave me a comment and share a lesson or two that you have learned from Riley.  Ah come on you can do it.  Whether you know him in real life or just through this blog you know something just popped into your head.  Write it down! 

1. Find a Dr. you can trust and stick with them. I feel a bit like our pediatricians are a part of the family. I see them on a very regular basis especially now that cold season has started with Asthma boy and his side kick wheezy.


2. Cliches should not be used in a time of stress.  My friend Amy and I think that we will make millions when we publish the book that started with just a list of things not to say to Mary. (cause wow was I pregnant and moody when I discovered Riley would have Down syndrome) Since Amy and I run neck and neck for the coveted Drama Queen title we have a list for most crisis situations.


3. Who my friends are. I have some really amazing friends.

4. How much my mom means to me. Growing up I don't ever remember not liking my parents like most teenagers do but we have certainly grown much closer in the last several years. I don't know how I would have managed to get Riley to therapy twice a week for the last year with out my mom's help.

5. OT, PT, Cognitive therapy - and a zillion other ways to "play" with Riley to help his development. I think we should rename it all and call it Play therapy. Maybe it would seem so over whelming if I was just headed to play date a couple times a week.  Update Fall 2011:  I've also learned about Handwriting with out tears, hearing aids, FM systems, and IEPs. 

6. How to fight with my insurance company and occasionally win. Persistence is the key to success.
7. Children with Down syndrome tend to have the cutest hands and feet ever. How can you not fall in love with the short chubby little things
8. It isn't a good think to growl at everyone who tells you that those kids are so loving. This is one of the items that belongs on the list that Amy and I have made. This is just one of those statements that drives me insane. I would like to think that my children would and are both loving and happy because they live in a loving home. We might be crazy but we are loving :-)

9. Don't take things for granted.

10. Notice the little accomplishments in life. When Rex was tiny we just took it for granted that we would moved from milestone to milestone. I wish I would have paid more attention to the details.

11. Small inside jokes can take on a life of there own. I was so tired of people talking about Riley as "one of those" or "they" that I may have freaked out one evening over dinner when Justin and I had escaped on a date night and were out to dinner with Jeremy and Angie. Well, in a totally off color and yet hysterically funny way Jeremy points out to me that a family we happened passed had a child with Down syndrome, but it went more like "Hey Mary! they got one of them kids too!!!" and with that it started. We often joke with our other friends that have "one of them". I think I have everyone around me paranoid about making generalizations about Riley.

12. The bond between brothers is immediate and very strong. I have been amazed by Rex and the instant total and complete love he has for Riley. I have no doubt that he will always be his protector. I have been worried about how having a brother with Down syndrome will affect Rex... so far I don't think he realizes that all babies aren't just like Riley. If he does he certainly doesn't let on. Rex gets so excited when Riley learns something new, he has a huge sense of pride in teaching Riley. Since I was pregnant with Riley, Rex has had a list of items he will teach Riley. He is currently about to check off "teach Riley to walk" and then I think he is moving on to riding a bike. Both of these activities are entirely more exciting than teach him to sit on the sofa which was his first item on the list after I explained that Riley wouldn't be able to walk and ride his bike for quite a while after he came home from the hospital.  Update Fall 2011:  Rex is still his teach in all things.  He is also a great speech therapist.  Rex often makes Riley repeat things and really use his words to earn what ever he is after. 
13. I used to think that I was pro choice and proud of it. I have always thought I though I could personally not terminate a pregnancy it was not my place to decide what other women did. Not too terribly long ago I had a couple of encounters with people that were facing a prenatal Down syndrome diagnosis and were leaning to termination. I now know that I am not pro choice. How could you possibly terminate Riley. It is personally offensive to think about.
14. I could adopt. One of my worst fears before I had children was that I wouldn't be able to conceive my own child and I would have to decide if I was able to adopt a child. I have two adopted sisters and it has not always been a bed of roses. When I hear the statistic that 90% of pregnancies with a prenatal diagnosis of Down syndrome are terminated I am sick. I know that I could take any one of those children and raise them as my own.

15. Sign language- I love the signing times videos and so do both my boys. Rex has picked up a ton of signs very quickly. He is much better at it than I am. I think it is so cool though that my family and friends are trying to learn Riley's signs too.   Update Fall 2011:  Riley has stopped signing for the most part and replaced it all with words.  We occasionally get signs for more if he really wants to stress that he wants more food. 

16. 80% of children with Down syndrome are born to women under the age of 35 Not could could it happen to me at 30 but it did and I'm by far not the youngest of my friends to have a child with Down syndrome. We have so much education to do still.

17. My house will never be clean. EVER I'm not known for my housekeeping skills but I attempt once in while but seriously they should make a carpet that goldfish crackers and cheerios blend in with better. Update Fall 2011:  Yep its still not clean.  Not so many goldfish these days.  Riley has moved on to Gogurt and string cheese.  We find string cheese butts everywhere. 

18. My fear was a waste of energy. I was so afraid of having a child with Down syndrome. If only I new then what I know now. I wasted a lot of time crying and afraid of what our life would be like and what Riley's life would be. If only I new how wonderfully normal and crazy it would be all at the same time. I wish everyone that knew they were having a child with Down syndrome could meet a child like Riley. Then they would understand.

19. Journaling is a stress reliever for me. While I love Riley to pieces he has also brought some added stress to my life. It is a challenge to keep up with his therapy schedule and Rex's soccer schedule plus any other activities going on and not feel a bit like I'm running in circles. I'm so glad I have found something to help me process it all.

20. I'm a sap. Who knew I could be that excited to see a new born baby latch on to a pacifier. Woo hoo he could suck and that means he'll be able to eat. Or be moved to tears watching a child roll over for the first time. Not only have I been so excited for every new milestone but I see and appreciate them so much more when I see other children do them.

21. I would not trade my crazy life for anything! We have our moments but I wouldn't trade my three boys for anything. I have a wonderful husband that I love dearly, and two hysterically funny boys.

OK Now its your turn.  Leave a comment.  You know you want to. 

I gotta get myself some Kekahunas!



Sorry but your in for random thoughts by an exhausted Mary tonight. 

My blogger friend Tiffany had her big day on her blog today.  A site featured her blog and she is getting a ton of traffic.  Stop by and see her...  she made treats for us and even cleaned for her special bloggy party.  :-)  Elasta mom is her blog and its worth the click to check her out and leave her a comment telling her I sent you.  If you blog much you know how fun it is to get comments and we need to make this a record comment day for her.  We've joked that there are so many blogs that are so fake and annoying get huge traffic.  It feels a little like going back to high school and the popularity contest.  I promise Tiffany is as real as they come.  Her daughter has Cru du Chat and Tiffany beautifully share the story of the daily grind with a nice optimistic spin. 

I also stopped by to see my girl Carrie.  I know her in real life and have loved reading her blog Inner Hippie.   I'm stealing her words from her About me section on her blog. 

My name is Carrie. I am a very busy mother of 4 all under the age of 9. My husband works for Burlington Northern and is out of town most of the time. I am trying to get more organized, create a little art and lose the last of the baby weight. I’m not a writer so don’t expect much but I can promise lots of craziness and laundry.

I have a goal of running my first 5K in November 2011. I have never ran a full mile. I am working with an athletic trainer so I can run without my Terminator leg braces (as I like to call them). I have asthma and ACL reconstruction on both knees. I have lost 60 lbs and still have 20 pounds to go. Everyday I am a step closer.

I promise you won't regret following her blog either.  Her kick butt attitude amazes me on a regular basis.  I whine about having no time and she is chasing 4 kiddos 9 and under, making it to the gym and is the most amazing cake baker ever.   Someday when I grow up I'm going to have Kekahunas just like her.  Seriously I love her last name.  Such an endless amount of fun I have saying Kekahuna.  Its the simple things in life really. 

I don't follow too many blogs these days but these are two I truly enjoy.  I make time for real people that have real stories.  I hate the sugar coated my life is a storybook blogs and will pass them by to read real stories of real moms getting it done in a heart beat. 

This morning I compliment Riley's teacher on her cute outfit.  She was dressier than usual but super cute.  She laughs and says "ah thanks.  I was out of town this weekend and didn't get the laundry done"   I so get that.  I love these little reminders that most moms are in the same boat.  We are all running around trying to get it all done and sometimes we make it and sometimes we stumble.  Cell phones have been outlawed while driving.  I am much more distracted thinking about my to do list as I drive to work.  Talking on the phone is the much easier than balancing the checkbook, scheduling a drs apointment, writing the grocery list and scheduling the days activities. 

So here's to all the real moms getting it done everyday.  I love ya all! 

Can you hear what I hear?



I'm not sure exactly why I haven't tackled this little bit of news in Riley's world yet but I'll give it a shot tonight. I've had 24 days in October to share but I haven't.    I guess it seems like a big issue.  One that I should give a lot of profound thought to or have a great story to go with.  It really is fairly simple.  Riley is now wearing hearing aids. 

I have gotten a ton of questions about Riley's hearing and if this was a new development or what exactly happened that at almost age 5 he is getting hearing aids.  We have been amazingly blessed with Riley's health.  He simply has not had a multitude of health concerns like so many of our friends. He tends to have really random issues that cause no real issue after they are dealt with.  For example he was born with two fingers stuck together.  They were surgically separated and that was the end of that issue. 

This hearing issue is not new.  We simply have a new Dr. that pushed the issue  with and for us.    Riley has been going to the ENT since  birth almost.  Children with Ds have really small anatomy and are know to have issue with the ears so screening starts immediately.  He had tubes placed at 9 months and as we approach his 5th birthday in a month we are still on the original set of tubes.  About a year ago Riley's ENT, whom we loved, retired.  So we saw a few Dr's in the practise and settled on one that seemed OK.  He is great with Riley and overall a very mellow man. Since it had been a while since Riley had a full hearing screen he ordered one and the results weren't great.  We got the typical story about how small anatomy and tubes can cause these results.  I didn't really think much of it and thinking back on it I think something was mentioned about how we'd monitor things.  Honestly this Dr visit was always a no brainer that didn't require much thought.  Things were good we would get the tubes checked and the gunk removed and be on our happy little way. 

In June we had another hearing test and as the Dr was going over the results from the day he dropped the big "if the hearing tests don't change we may need to consider hearing aids"  bomb in the middle of a very typical update.  I think my jaw hit the ground because this thought simply had never ever ever crossed my mind.  I know Riley can hear.   So we chatted about the results and scheduled a recheck in a month.  This Dr with this one decision to push screenings a little more has made a huge difference.  He didn't accept Riley's huge language delay as simply being part of Down syndrome. 

That month was a long one.  I questioned everyone that I could draw on for a resource.  I grilled our speech therapist and my friend Paula who has a child that has a cochlear implant and a hearing aid.  We did our own tests on Riley and were convinced he could hear just fine.  I googled and googled trying to find anything that talked about low frequency hearing loss.  When were hearing aids really useful?    To be completely honest my panic about hearing aids had very little to do with anything other than the price tag.  I immediately called our insurance company to confirm my fear that we have zero coverage for hearing devices.  Big surprise not many people do.  It just isn't a typical coverage.  So the month came and went and the next appointment arrived. 

It was an off day for Riley to say the least.  The month before he had been amazing during the screening.  He played all the games, answered all the questions and the girls put the thingy mawidigts in his ears.  As I was leaving I received several compliments from the staff on how amazing both of my boys were.  Rex had come with us and was so patient as he waited for Riley to finish everything.  It was a good day.  Now picture the opposite and then multiply it by 1000 and that is how bad Riley was on the follow up screening.  As we were rescheduling yet another followup he ran off from me and I had to chase him down the hall way.  I actually had to follow him into an exam room where the Dr was left open.  I was more than mortified to realize that there was a patient and their family in that exam room.  Granted next time I bet they shut the door it was still not a good moment.  Since these results were not reliable we had the conversation about how long to wait for reliable tests, if a was sedated ABR needed, or really what were the next steps.  We settled on another screening in a few weeks. 

I went back prepared for battle.  Riley was going to behave and we were going to get this done.  Plan B was that I was going to ask to see the hearing aid specialist and see what we could come up with.  I didn't not want a sedated ABR if I could avoid it.  No need to sedate if you can avoid it.  Well that was a waste.  Riley was a total rock star again and I had no need to prepare for battle.  He was flirting with the audiologists, the nurses and even put on a good show for the Dr.  He had to show the Dr how to solve the puzzle on my IPhone.  The tests very deemed very reliable and so we had our results that showed a high moderate hearing loss in the left ear and a mild hearing loss in the right. 

asked them to give us feedback as he progressed.  We weren't so sure that this very expensive experiment would do anything at all but we were going to give it a try.  So we did the molds and went back to get the hearing aids and learn how to take care of them and help Riley get used to them.  We put them in that Friday morning and haven't looked back.  Riley immediately had facial expressions that told us he could hear things he wasn't used to hearing.  The follow morning while we were outside at a soccer game he hear a train in the distance.  He got a funny look on his face and said Train?  He knows the sound of a train but in the distance I don't think he had hear that distant sound before.  Immediately people started telling us that they could tell a difference in the clarity of his speech.  I was glad to hear other people notice it and make sure it wasn't just Justin and I hoping to hear something. 

Experiment done.  Hearing aids are staying.  Riley has been amazing with them since that first day.  He leaves them alone for the most part. He has discovered that if he jumps up and down really hard he can make them come off.  That isn't common behavior thankfully.  The aids came with little decals of ton of different designs.  Riley choose the giraffes for his.  If you ask him to show his giraffes to someone he turns his head to show his aids like he is a girl showing off the new diamonds hubby just bought her.  It is pretty cute. 

This morning he brought me the case that we keep them in and asked me to put them in.  There is no reason he would do that unless they make a difference for him in his world.  I feel bad that we didn't pursue this earlier but Justin and I are pushing this parental guilt to the side.  We made the best decisions we could with the information we had. 

I took pictures and a little video when we first got the hearing aids and had plans to post them but my photo card is giving me fits.  I will update with video as I get it to work. 

Name that Tune!

Riley is a singing fool these days.  We sing a lot of Old McDonald.  When I rewatched it as I uploaded it I realized he was asking for Shoulders aka Head Shoulders Knees and Toes.  I was a little slow on the uptake on figuring out that one. 

Make a video - it's fun, easy and free!
www.onetruemedia.com

The Riley Show

Riley can work a room like no one else I know.  Today was a prime example of this.  We were out at my parents house for a gathering and these are people I don't see very often so I know Riley doesn't know them.  They were all from my parents church so it was a nice warm crowd but still a group that he doesn't see more than a few times a year when we go to church with my parents. 

We arrived early to hang out with my parents for a bit before the crowd arrived so Riley was nice and settled by the time the party started. The first of the guests arrived and Riley runs to the kitchen and gives this women a huge hug.  Then runs over to her husband and gives him a hug too.  This patterns continues as more people arrive.  At one point he heard someone say hi to a women so he yells HI CHRIS and gave her huge hug too.  It was hysterical to watch the reaction of people.  They are always a little surprised when Riley is so quick to give a hug but it brings a smile to every one's face.

Riley and Rex couldn't be more opposite in this area.  Rex stayed in the kitchen away from the crowd most of the day.  Less chance of an adult talking to him that way.  He is much better these days about talking back when someone talks to him but its painful to watch.  He is so shy around new people it hurts.  I always wonder what he is thinking about Riley as he's running around hugging strangers and Rex is trying to be as inconspicuous as possible. 

I feel Rex's pain.  Working a room of people is not my comfort zone.  I'd much rather slide into the background.  I envy Riley and his ability to walk up to anyone and give them a big squeeze and totally make their day.  Hugs and smiles do make things better! 

Ella is still one of Riley favorite people to hug.  Thankfully Kacey takes pictures so I can steal them.



Swim lessons Summer 2010




DS Connections Picnic Summer 2011




TOP Soccer Spring 2011



21 Things About Riley

October 21, 2011 brings the yearly list of 21 things about Riley.  You can find last years list here.  2009s list is here and my original list is here.  Hard to believe this little blog has been around so long.

1. Riley is almost 5 now.  
2. Riley's  favorite food is is chicken.  He wants dinner to be chicken every night.  We call lots of things chicken...  we'll teach him about pork and beef before he gets married. 
3. Riley started wearing hearing aids 3 weeks ago.  They have made a huge difference already. 
4. Riley is pretty much potty trained and is dry through the night too.  This process sent us to the urologist where we discovered his testicles hadn't totally descended. 
5. Surgery to correct #4 will happen in January. 
6. Riley has huge x ginormous tonsils.  The ENT is watching them and the speech therapist has expressed concerns.  I'm guessing the tonsils don't make it through 2012.  I wonder if they will give me a discount for taking 2 kids in at the same time. 
7. Riley loves his new daycare.  He acts like he has been there for years.  When he arrives in the morning he yells "morning Sara!" to his teacher and is off. 
8. Tiny Tim the Turtle song is his current favorite but Riley loves to sing and all kinds of music. 
9. He also loves to sing the ABC's, Twinkle Twinkle  and a ton of more pop stuff like I'm Yours by Jason Mraz, songs by Pitbull and Katy Perry.  He does his best singing in the car. 
10. Riley is a HUGE Elmo fan.  He loves all things Sesame Street but Elmo is the fav!
11. Riley loves books!  One of his current favorites is Ten Little Ladybugs
12. Riley adores his big brother.  Rex had still make him laugh faster than anyone else in the world.
13. Puzzles are Riley's favorite app on my IPhone.  Its amazing to watch he moves the pieces around and drop them into place.
14. Angry Birds is another favorite app.  He has a hard time shooting the little bird the right direction but he loves it!
15. Riley doesn't like to walk anywhere.  Running is more his speed. 
16. Riley is going to be Wood for Halloween.  We borrowed a pair of cowboy boots from our friend and my mom is sewing a vest.  He is going to rock this one. 
17. Riley loves to cook.  He helps me count the eggs and stir.  He is very handsome in an apron.
18. Riley loves to play with his friends.  I can bribe him to do almost anything with the promise of getting to play with his girl friends, or Braden.  HMM now that I think about it I think I need to find him some little boys to play with.
19. Play dough is one of Riley's favorite things to play with.  Typically he makes snakes!
20. Farm animals are always at the top of the list for playtime fun.  He loves to build barns from his blocks to put his animals in. 
21. Riley is amazing!  He is learning so much at school and has been talking a blue streak.  Its been fun to be able to relax a bit and just enjoy having a 4 year old in the house.  Too soon he will be off to kindergarten. 

The big move!



Tonight we moved Rex into his own room.  He decided almost 2 years ago that he wanted to share a room with Riley.  It has worked great to have them sleeping in one room and have the toys in the other room.  Late this summer he asked if he could have his own room again.  We decided this was a good decision and so for Rex's birthday we promised him a new bedroom of his own.  This simple project has turned into the longest small project ever.  We painted, pulled the trim and repainted that and Justin refinished the hardwood floors.  It has all turned out really well.  Rex picked a silvery gray color for the walls and I painted the ceiling dark gray.  We trimmed it in white and a light finish on the floors.  All in all I think it looks great.  My mom hooked us up with curtains.  Rex decided he wanted Washington State University cougars for his curtains and Gramma gave him a great cougar blanket for his birthday.  He is in heaven! 

We aren't quite done but its close and tonight he moved his bed into his new room.  He went to sleep a very happy boy tonight, but not before he hung a sign on the door marking his territory.