Sunday Morning with Hayden-- Shit Mittens

At the beginning of Hayden's life, there were just so many things to worry about that something as far in the future as toilet training wasn't even a blip on my radar.  As with any child, I knew that potty training would have to be addressed and that it would probably take longer for Hayden to get through the process. When Hayden was about 10 months old I heard from a friend who had an 8 year old son with Down Syndrome.  She was telling me about some of the challenges that they had faced, and she brought up the potty training issue.  More over, the fact that he had not conquered that milestone yet. What!! Something snapped in my head! I thought there had to be something more I could do than just wait for him to decide to use the toilet!

Now, since I had already trained four of my own kids and had helped with many other children that I have watched over the years, I felt confident that we could achieve this goal in a much more timely manner. So, that very day I pulled out an old potty seat from the basement and sat him on it. 

This wasn't his first time, but early on.

Hayden sat on the potty doing his business for years.

 By the time he was two years old, he had mastered walking, climbing and escaping through any barricade set before him. We kept working on the potty training.

So freakin cute!

His little feet didn't even touch the floor.

The problem was that he would never initiate when he had to go himself.  If I put him on the potty, chances are he would go.    I got pretty good at catching him when he made a "poop face".   I would quickly get him to the toilet and praise him for a job well done.  I thought this was a pretty big step!  I had high hopes of him being completely trained before he went to nursery school.  

I thought I had a pretty good handle on the potty training issue, until... Hayden decided to go it alone....

I wish I new the exact date, but looking back on it, it had to be around the time he was three years old.   He had mastered going up and down the stairs by crawling up and then scootching  down on his butt.  I was having a hell of a time keeping him off the stairs all day, so we had to put up a gate that we could latch at the bottom of the stairs.  It didn't take him long to figure out how to unlatch the gate.

One day he slipped away from me for a little bit. I actually had no idea that he had gone to the upstairs bathroom.  He must have tried to get on the potty himself.  He didn't quite make it.  He had removed his pull-up, but was too slow to climb on the seat and  pooped on the bathroom floor.  The evidence showed that he thought he would pick up the logs on the floor and put then in the toilet.  But when he touched it, it could have been the warmth or the texture, I am not sure which, but he decided to play with it for a bit. He smeared it all over his hands! Some on the floor and toilet, but mostly on his hands. When he was finished playing he decided he better find mama to help clean up his mess. I will never forget him calling me from the bottom of the stairs and his look of triumph when he held up his hands.  They were completely brown and fuzzy looking from the tips of his fingers to his wrists! At first I wasn't sure what he had gotten into. Then I realized what it was....SHIT MITTENS!

The best part was the brown streak that he left down the middle of each and every step of the cream colored carpet on the stairs.

By the time Hayden was four, I hated the thoughts of sending him off to nursery school still wearing pull-ups. Of course the school was use to this with special needs kids and didn't think it was a big deal at all. But I somehow felt that I had failed. I mean we had been at this for so long! He knew what to do, but he was not trust worthy to do it on his own. 

I thought for sure he would be trained before kindergarten.

Close, but still unreliable. 

The staff there implemented a toileting plan that seemed to work during school hours. As soon as he got home, it was a different story. He was pooping on the potty daily, but would pee without notice. We tried underwear, underwear inside pull ups, underwear and plastic pants.  Nothing seemed to make a difference.

Now Hayden is six and a half.  This week something just seemed to click.  We were out of pull-ups and the thought of having to keep buying them was totally annoying!  I told Hayden that they were all gone and he had to wear the "big boy underwear" all day.  He agreed to try hard to stay dry and left for school.  I sent his teacher a note of warning and extra changes of clothing.  Low and behold.... he came home in the same clothes he was wearing when he left that morning!!!  I am pleased to announce that he has been doing well all week! He even told me he had to go pee today in Target.  He went in the stall by himself, I heard him go, and when he came out he washed his hands!   I am one proud mama!

Sunday Morning With Hayden -- Bye Bye Biscuit

Over the last nine years I have been working on painting my master bedroom. I have lived in this house that long and mine is the only room in the house that has never been painted (other than the builders off white). I have thought about it, planned it, settled on one of the many different color paint chips taped to the wall, and then changed my mind. I am usually very good at making decisions, but choosing what color to paint this room has eluded me.  I always tend to look to nature to help me pick a color.  I love  shades of blue, green and brown. But, I was really trying to stay away from that by doing something total different. Well, I think that was what was causing the hold up.  I was trying not to listen to my gut instinct. I should know better. My gut never leads me astray.


When we first moved in to this four bedroom house, I was pregnant with Liam. We knew he was going to be a boy, so my first thought was to make the smallest room his nursery, put the two older boys together in the biggest room and give the only girl her own room in the middle sized bedroom.  Ryan being the oldest thought he should have his own room. After much deliberation on my part, as the kids already seemed to have it all worked out, I decided to let Ryan have the little room to himself.  As I was due in three months, making a room for the new baby took precedence. Typical nesting. 
Dylan helped me pick a "space" theme for the room he would be sharing with Liam. I purchased a whole space line of bedding and decor items form Pottery Barn Kids. The room was so cute! Sounds like everything was fine, right?


Wrong.
After about six months, Ryan wanted to switch rooms to be with Dylan. I don't know if it was my awesome space paint job, or just the fact that he missed sharing with Dylan, but he was adamant.
This met having to paint the smallest room for Liam. I choose a "Biscuit" theme for the nursery. For those who don't know, Biscuit is a dog in a series of children's books by Alyssa Satin Capucilli. I painted Biscuit murals on every wall. I had so much fun!

I'm not forgetting Kyra in all this, but her room took a couple of years to get painted and she has asked repeatedly over the last two years for it to be redone. I keep telling her, "not till mommy paints her room!" That excuse is getting so old it just isn't cutting it anymore. I had already made one exception and I know that the other kids are not going to let that slide for very much longer.














When Hayden came along, There was no choice but to put  him in with Liam.



So, cut to last August. 
My boys all switched rooms when Ryan went off to college. It just made more sense to put the two younger boys in the bigger room and put Dylan in the smaller room.  I really hated the thoughts of painting over Biscuit. But, Dylan just wasn't having Biscuit on his walls. He was turning 16 at the end of August 2011 as Ryan was leaving for college and the "space" themed room that they had shared. He asked me to please paint the room before he took it over. He knew my room wasn't painted yet, but with his charm and blue eyes, he persuaded me to do this for him. It didn't take much. I wanted him to be happy with his new room and it would be the first time in his life he wouldn't have to share. I let him pick the color(s).  
At first I regretted this decision, as he choose deep purple, black and gold. I have to say now, that it is totally Dylan! He has a good eye for color.


I began painting the room for Dylan at the beginning of September. At first, things were going smoothly. Then, not so much.... The trouble began very late one night after we had gotten home from a day at "The Great New York State Fair". Glenn, me and the kids were very tired from a long, hot day at the fair. We all collapsed into bed and fell straight asleep. Or so I thought. Kyra decided she needed a shower to clean off the fair smut before she could sleep. When she came out of the bathroom at 1:30 am, she found Hayden in the hallway  covered in some unknown dark, tacky substance.  She immediately began screaming for me like a banshee! I shot out of bed to see what horrible thing had happened to her only to find poor Hayden cowering in a corner of the hall trying to hide from all the yelling. In my most motherly way, I asked her what the hell was wrong with her! She just points to Hayden. As I lean in to pick him up in the darkness, I can see that he is covered in something. My only thought at this point is that he had a bout of explosive diarrhea. Not unreasonable as he had been eating fair food all day. I grab him under the armpits and haul him into the tub. I turn on the water and start hosing him down. As I start to wake up a bit and come to my senses, I realize that he doesn't smell like shit, and we are still in the dark. I flick on the light switch and as my eyes adjust, I realize that Hayden is purple. What the????
I yell for Kyra who turns on the hallway light and sure enough.... purple paint is everywhere!
Apparently, Hayden thought he would help me finish painting Dylan's room. Like a little elf in the middle of the night. I would wake up in the morn and the room would be finished. None the wiser that he had done the job himself. I am sure that was his plan. What else could he have possibly been thinking?
The mess was overwhelming! How the hell did he get the lid I know I pounded on with a hammer, off the paint can?!! I had no idea where to start or how to clean it up. The walls in the hall that he touched, the carpet, the tub, the white doors?  I grabbed a wet rag and tried washing the purple off the doors. I was not planning a painting the doors. This was just too much trouble at 2 am. I decided to give up and go back to bed. Maybe it would all look better in the light of day.


Wrong.
It still looked B. A. D. We were not planning to remove the wall to wall, but it was the only option. No other choice but to paint the white doors and the trim. The worse part for me was Biscuit. I had negotiated with Dylan to leave the one Biscuit mural that was mostly behind the closet door on the wall. I didn't think this was too big a deal for him since for his new bed he choose a race car bed! What sixteen year old wants a race car bed?!?! A friend actually was getting rid of one that her 10 year old was finished with. It was red and Dylan wanted it black so I spray painted it black. I does look much cooler than I would have imagined.
I digress.  Hayden had finger painted all over the cute little Biscuit that I left for posterity.


Anyway, in the coming days, everything was repainted. Carpet ripped out and I installed a new laminate floor too.

 This week I finally started painting my bedroom. I decided to go with my gut. I will do a reveal in a future post. When it is all done. I hope I can keep Hayden from trying to "help" this time.




Dylan told me later that he paid Hayden to get rid of Biscuit for him. He probably loosened the lid for him and paid him in M&Ms!


Bye bye Biscuit.

Sunday Mornings with Hayden--Can we go home yet?

After the initial shock of learning Hayden had Downs, all I wanted to do was take my baby home. I did not want anymore helpful doctors and nurses telling me about this test or that test that he would need to determine if he had heart defects, digestive issues or whatever. The statistics they were throwing at me about what probable problems come along with Down Syndrome were varied,  many, and scary! I wanted to grab him and hide, preferably in my own bed where the world could not bother us. I had absolute faith that he had none of these medical issues requiring surgery. I knew he was fine, but Hayden was not so cooperative.
 He had to stay in the hospital for the first week as he could not maintain his body temp. He was also jaundice and needed to be wrapped tight in a special lighted blanket. The bigger problem and most stressful for me was his weight loss. He had dropped down to 6lbs within a few days after birth and they would not let him go home until he gained 6oz. It doesn't seem like much, but it took days for him to do this! He wasn't getting the hang of nursing, but I would not give up. This seemed like the most important thing in the world to me. A deal breaker. I would have practically no sleep till this problem was solved.
Another problem.... he failed his car seat test. What is that you ask? The "car seat challenge" assesses whether preterm infants who are ready for discharge home are prone to episodes of apnoea (stopping breathing), bradycardia (slow heart rate), or desaturation (low oxygen levels) when seated in their car seat. This met we could not take him home until he passed!
Also, Hayden failed his newborn hearing test. Flat line in both ears! This really freaked me out. I could not stop thinking how bad things were going to suck if he was deaf on top of whatever other challenges he was going to face in life.
I remember crying in the shower every day. This was the best place I could find to let all my grief out. I did not want to cry in front of the hospital staff, or my family. I thought they would think I was weak, a terrible mother.  Or worse, look at me with pity in their eyes. That was unacceptable. I also didn't want to scare my other kids. Their father had explained about Hayden to them. I am not sure how much they understood. Mostly Glenn was privy to my tears.

Big Brother Ryan

Big Brother Dylan

Big sister Kyra

Big bother Liam

My favorite "schmoopi" face

After eight days of wondering if we were ever going to take Hayden home, finally everything was a go.
Glenn had come up to the hospital everyday with Liam who was two and a half at the time. Liam could not wait to have his new little brother home! HE WAS SO HAPPY!

Liam wanted Hayden to sleep in his bed.

I was determined to nurse him as I had done with the other four.  Due to his lower muscle tone, staying latched on was a problem.  It was completely frustrating to me! I was an experienced nurser and was not going to give this part of motherhood up!! I had to pump every two hours and then feed him a bottle. I did this for three long, long weeks! Sleep was not an option for me. "Feed the baby" was all I could think about. During this time, I was trying as many different  methods for getting Hayden to stay latched on as I could find. A nursing consultant we went to see at the hospital when he was almost three weeks old gave me this thin, clear, silicone nipple to put over mine to see if it would give him a little more something for his lips to grip on to. BINGO!! That little piece of plastic made all the difference in the world! We used it for a couple of weeks until he got the hang of it, and then he nursed like a champ till he was two and a half!  

Glenn at feeding  time

 I know now that I was grieving. Grieving the loss of the baby boy I didn't have. I got the wrong one. Not the one I was suppose to get. I had to come to terms with that before I could fully focus on the baby boy in front of me. I was going through the motions of what I knew I had to do for his survival, but at the same time I kept thinking I don't want this. I don't want this one. That made me feel just awful inside. I'm crying as I write this. It is just so awful to admit even to myself. I really hope this helps someone out there know that they are not alone and that this is a normal reaction. AND, quite temporary! The next emotion I remember having was an overwhelming need to love and protect this child at all costs. I was going to keep him in a bubble where no one would ever be able to hurt him. It would be just me and him together forever. I would love him to the max as only a mother can. He is far from being kept in a bubble, but I am the proudest mom on the planet of all my kids. And Hayden is my shinning star.

Hayden at 7 months

 

***About the Hearing Issue***
I found myself doing all kinds of "tests"on him. He would lay quietly looking around and I would clap my hands together behind him as loud as I could to see if I could startle him. Then I would try to decipher any movement he might have made. Drove myself nutty! Probably him too!
The first couple of  years of testing every few month with an audiologist seemed to leave us still questioning his ability to hear, but then he had an ABR (Auditory Brainstem Response) test and passed with flying colors! Now his hearing is just selective like the other kids.

Sunday Mornings with Hayden --"What did he say?"

Have you ever seen a movie where a person receives bad news and their mind starts reeling and the voice of the person giving the bad news is faded out till you can't hear it?  Everything is just swirling around and all sense of space and time are lost. This was the exact feeling I had when our pediatrician came in to my room after Hayden was born and said..."We think your son may have Down Syndrome." He went on to tell us why he thought that, but I never heard any of it. The bottom had fallen out of my world. I was falling through space. Total blackness. No sound. 
I am not sure how long that lasted. He was born around 7am on a Friday morning, The next time I got to hold him was around 10 pm that night.  Hayden spent the day in an oxygen tent.  I spent the day with all kinds of people from various agencies stopping by to give me info and invite me to join support groups.
For the record, I never read one piece of paper from out of the stack of large manila envelopes that were left for me and I never joined a group. Just not my style. And with five kids, who has time? I'm sure they all met well, but I felt like these helpful folks were granting me membership to some kind of exclusive club that I had no interest in ever joining.  I just wanted to be left alone to. Life as I knew it had just ended. I remember a poem about a trip to Holland that kept showing up that made me want to scream! I know this all sounds very dramatic. It is hard for me to go back to that day and put my feelings into words with out sounding dramatic. Unless you have been through it, it might be hard to understand. I am so far from those feelings now that it is hard to think that I actually felt that way!
The worst part of that first day was the overwhelming feeling of lose. The joy I had felt from giving birth to a new life earlier that morning had been replaced with a feeling of deep sadness. Like someone was dead instead of born.  Nothing made any sense.

And yet, it all made perfect sense.  I didn't need genetic testing to prove it was true. I knew it was true. When my son was first placed in my arms, newly born and covered in goo, the first words out of my mouth were, " He doesn't look like the other kids!" He was smaller for one thing. At barely 7 lbs, he seemed tiny compared to the other babies I had given birth to in the 8 to 9 pound range. In his defense he was born three weeks early. None of the others where early. I looked at him and I knew. 
My family has a lot of experience with people with  Down Syndrome. My mom's brother, Uncle Danny, had Downs. He was born in 1960 with a severe heart defect. Dan passed away from complications after open heart surgery when he was 15. I was 8.  It was to say the least, the most traumatic event of my childhood. My mom and her sister cried endlessly for months. I can't remember anything being so sad or feeling so hopeless. 
About a year later, my grandparents became foster parents to another boy with the Downs that they had met when Danny was in a New York City hospital for the heart surgery. Dan and Ron were roommates.  Ron was having a tumor removed from his brain. He had no family there to visit him. Dan had asked if Ron could come live with them. My grandparents somehow remembered the request after the fog of grief had lifted. They embarked on a quest to find Ron. They new his name, but had no idea where he might live. As fate would have it, he was living right at the Syracuse Developmental Center in our own back yard! The first time my grandma went to visit him there, Ron exclaimed, "Mom, you came!" He had been waiting for them to find him. Ron became my uncle. 
My Aunt Joyce became a social worker and got a job at the SDC to help others like Ron find families to live with. She just retired after 35 years!! My mom was an RN there for 20 years. I also worked for the SDC  running group homes for 10 years! I have other cousins who do the same still! 
To top it all off, my husband Glenn, had Aunt Patti, his dads sister. She moved in with Glenn's family when he was 17. His grandmother had died and Patti had no where else to go. She passed away this past November at the age of 68.

Interesting fact....my uncle and Glenn's aunt had the same birthday.
WAS I DESTINED TO HAVE A CHILD WITH DOWNS????
I think so!

What Is This Blog About Anyway?

When I tell my friends about the craziness that goes on in my life, they always say, "You should write a book!". That just sounds like it would be hard and take way too much time. I have never thought of myself as a writer, only a reader. A good friend mentioned blogging. I really had no idea what that was. It took me a few years to even look into it. And then a couple more years of thinking about it before deciding to give it a try.

Most of my reasons for wanting to start a blog have to do with my son Hayden. He was born with Down Syndrome six and a half years ago. This was totally unexpected. It raised many emotions that I had trouble sorting out. I wondered if other moms in similar situations felt the same way. I want to share more about those first months with Hayden and hopefully help some moms out there who are going through the mixed feelings of having a baby with a disability. Everyday since has been a new adventure with him. He truly amazes me with his determination and wit! He has become the center of our family. Everyone he meets is captivated by his charm. No lie! The kid has swagger as my older children would say.

The rest of my reasons for starting this are the countless other things that happen around here and the millions of thoughts that are floating aimlessly around in my head. I need to get them out! I have many interests and talents of my own and after nearly 19 years of motherhood, have a NEED to find out who I am.  I have been a "stay at home mom" for 12 years. We are not rich, so this has met that I have had to be creative with spending and find ways to bring in extra income. I have babysat for many families over the years. Oh wait, I mean "provided Child Care". This has been the best way to stay home and still make some money that I have found. My other at home job has been  my ebay store. I have sold many things my kids have outgrown and that we just don't need anymore. People also bring me their junk to sell for them for a commission.
I am now focusing on starting an interior painting business. I LOVE TO PAINT!  Walls, furniture, anything really. I feel like I have found my passion, just haven't found how to make real money at it yet. I have had four paying painting jobs so far.  Since I took a break for Christmas, I have had trouble getting back to it. I might get around to explaining why that is in future posts.
I have always enjoyed painting. I also enjoy knitting, crocheting, beading, cross-stitching, baking and lots more stuff to a lesser degree.
I am trying to decide what my "voice" sounds like in a blog. Should I sensor myself? Or let it all come out like I actually think or say it? I don't have a super trash mouth or anything, but I might have an f-bomb flying about from time to time. I am leaning toward just letting it sound like me telling a friend about whatever it is rather than like reading a magazine article in a doctors office.
Now that we know what this blog is going to be about, my next post will be about the first reactions I had upon hearing that Hayden had Downs. I think I will just go from there and see where it leads.