ignoring

Today I am ignoring most of my life. I am pretending my birthday didn't start at 2am with me sitting in big sis's puke. I'm choosing to ignore the plague that is working its way through my house for the 4th time this year - with still a few victims left to go. Pay no attention to the pages of questions I had to answer that basically pointed out all my buddy's weaknesses.

My mountains of warm laundry will become sand beaches. The needy children will be amusing monkeys in a tropical rain forest. And I suppose while I am at it, let's make this my 24th birthday.

Here are some of the highlights of my week:

Her love of books and how she can silently read to herself.





My buddy feeling good enough to get off the couch and play his beloved iPad.





Uggs and her eyes.




Outside - airplanes in the sky, the joy of discovering and tire swings.






What are you pretending today?

breaking point

While we were leaving the doctor's office recently, I saw a mom break down in tears. When we first arrived, I noticed a child trying to flee only wearing her undies and saw her mom beg her, "not today." I thought nothing of it. I've seen all sorts of doctor's room antics from my buddy. On our way out, I saw the same child, now fully clothed, in the hallway shouting and hitting the doctor. The mom then fell to her knees, sobbing. She had reached her breaking point. Part of me wanted to abandon my sick child and toddler, run to her and hug her telling her it would be alright.

The image stuck with me. How hard some days can be with children who demand more of you. How that breaking point is higher than you imagined, but it is still there. It takes so little to offset the delicate balance you've created to help your child navigate this confusing world. I wish I could help every mother and child out there. And some days, I merely wish I could help myself. I wish there was some way to approach a stranger in public who is struggling and make them see that I really do understand. That they are not alone. Some times all it takes is just knowing that you are not alone.





We had a wonderful visit from my brother, sister in law and niece. I wish we lived closer and I could see him more. Neither of us are great at talking on the phone but in person we always have fun. Plus I got my hands on his baby for the first time. Big sis was gaga over the baby and rara has asked about her multiple times since she left. Every time my buddy comes home from being out, he asks for Uncle - probably because Uncle pushes way higher in the swing than Mommy.




This weekend brought some down time. We discovered a raccoon lives in a tree in our backyard so we decided to go on an early morning drive to look for more animals- and it was an excuse for me to use my new camera and stalk some barns in my pajama pants. And, just like always, we enjoyed a personal concert by Daddy. The kids love when he plays his guitar.

little things

We have been enjoying our vacation week. I decided to embrace the time with the kids and try to have some good ol' fashioned fun this week. Monday was beautiful, so we headed to the park. This is the first time going to the park with 3 very mobile kids. The good news is big sis loves to help with rara.




Tuesday we stayed home and played with every toy in the house.  I also went through all the clothes, removing the too small winter ones and organizing the hand-me-downs getting ready for spring and summer. This insured that we woke to snow Wednesday morning. There was also a lot of dress up. Here's her Easter Bunny look.

 


After an initial failed attempt to go to the library, we finally made it there in the afternoon. We love going to the library and nothing reminds me more of how far my buddy has come. He used to knock down every kid and I had to watch him like a hawk. If someone else came, we usually had to leave before he started trouble. He would climb on top of the tables and dump all the puzzles out before playing  in the water fountain soaking himself. Now, I can actually browse through books while my buddy plays nicely at the train table. He helps pick out movies and books. It's nothing but fun.








I'm working on enjoying the small things. Focus on the fun. Force a smile on my face and soon enough, I feel a smile in my soul. I know how quickly time goes by. My little rara is getting close to 2 and it blows my mind. Some days are harder than others, but there is laughter every day and for that I am grateful.

CPAP

My buddy is a not so proud owner of a CPAP machine. We are working hard on getting his sleep apnea under control so now my buddy has to sleep with a little mask over his nose hooked up to tubing that blows humidified air into his nose, forcing his wind pipe to stay open while he sleeps. There are many benefits to a good nights sleep - longer life, happier days and better health being at the top of the list. I must say that my buddy has shown noticeable improvements in his behavior. Don't get me wrong, he is still who he is - just a better version than he's been in a while. I no longer have to lock him in the dog cage... (no I did not really lock him in the cage - he put himself there)



And we haven't had an afternoon that ends like this...



My buddy does not understand that this torture device is what allows him to have the extra energy he's had the past few days. So when he sees me head to his room to get it ready for bed, ie. plug the machine in, he promptly poops from stress. And while my buddy has always woken several times in the night, he used to get himself back to sleep most times without any help from us. Now when he wakes, he freaks out because he's attached to a machine and we have to calm him down and lay with him until he finally falls back asleep. So far this has happened 3 -6 times until about 2am when we give up and take it off him. So while he may have lots of extra energy so he can play, we are a bit more tired than usual.



I like to delude myself into thinking that he will get used to wearing the CPAP mask and happily sleep through the night. I also like to delude myself into thinking that rara might night wean herself and not wake me up every 3 hours.

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We moved into this house in the end of August and did no yard work at all. There are many beautiful gardens... all of which stress me out. But rara and I have made good use of the beautiful weather and started cleaning out the debris. As you can see, there are a LOT of dead plants to remove.






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Today, Grandma and Papa came over to watch the kids so we could get out for a bit. After talking it over, we decided to take the girls with us. We know that sometimes their life is made more complicated by my buddy. He tends to make a lot of the rules. There have been so many times when we've had to leave before they were ready because my buddy was done. So we went for a nice bike ride, strolled through some shops and relaxed at an outdoor cafe enjoying a sweet treat. There was no chasing, shouting or stress. And my buddy LOVES Papa so he was thrilled to play in the backyard with him plus Papa took him in the tree house.

kinderarten

Our new school system has been really great. They created a day built for my buddy - morning kindergarten, work with Special Ed Teacher, lunch, and afternoon preschool. Since my buddy has an October birthday, he's one of the youngest in his kindergarten class and oldest in his preschool class. Even with a program designed for him - allowing him plenty of time to meet with all his therapists and play, my buddy has had a really tough year.

My buddy has his good days, but the usual for him is not that great. Most days there are times in the day where he throws himself down, refusing to do anything. I've had to go into his class for pickup because he refuses to walk out of the building. The school is working with a behaviorist and has implemented a reward system. So far it is helping. But we all know if he has a day where he drags his stubborn heels in the sand, there is nothing anyone can do.

His resistance to participate and cooperate is limiting what he is learning. It frustrates me and I'm sure it frustrates my buddy. My buddy has sleep apnea and rarely gets into a deep REM sleep. We head to the Pulmonologist soon and he will get a CPAP machine for home. The good news is he responded really well in the sleep study when he was hooked up to the machine. My dream for my buddy is that sleeping better and deeper will make a world of difference for his school day.

We've come to the decision that next year the best place for my buddy will be in the full day kindergarten program. Technically, it is considered holding him back because he is officially enrolled in kindergarten this year. I never envisioned my buddy repeating a year of school, but I am realistic enough to know that pushing him into first grade next year would not be in his best interest. He's had one foot in two different grades this year and we learned that my buddy fits in better with the preschoolers. He will get so much more from a full day of kindergarten next year.

Just like with all the other obstacles we face with my buddy, it's disappointing when he doesn't leap over them with ease. It's just another reminder that he is driving his own car and we are just along for the ride. I'm fairly certain his car is a Monster Truck, smashing and crushing as it slowly gets to the finish line.

On a side note, our backyard is half ice flow half mud. It makes for interesting times that require a full load of laundry when we come inside. Oh and we are still waiting for some sunshine.

the bar

Sometimes it's hard to know how high to set the bar for your children. You want to set it high enough so they have to stretch and grow to reach it... but not so high they give up in defeat. For me, this is much easier with my girls. It's pretty clear what they are capable of and what they need to work harder on. With my buddy, it's like some days he's almost there and other days he needs a step ladder to even get close.

I never know how hard to push him. I don't make a good motivational speaker. I have no competitive drive. Pushing does not come naturally to me. I also don't want our whole life to be focused on my buddy. I think what I need is a crystal ball that can show me different outcomes based on different choices.

My buddy just came home with a progress report. While I am used to seeing a long series of below grade level (except for Music and PE which he rocks), I was taken aback by many areas where his progress has declined. I know he has been refusing to do a lot of the work at school and they are working on some behavior modifications. Is his behavior impeding his learning? Is it to be expected for him to decline in some areas?

I could hire a behaviorist to come to our house and work on a program at home as well. I just need that crystal ball too see if it would really work in the long run. I know it would be a lot of work for me as well as time focused on my buddy and away from the girls. Would we all benefit? Do I have the energy to make it work? I seem to have more questions than answers.

We had one afternoon of warm weather... not enough to melt the snow but enough to give us all a little spring fever.

party

I took my buddy to a birthday party this weekend. I thought it was for a kindergarten friend, but as I looked closer, I realized it was for a preschool friend. It can be confusing with my buddy being in two grades at once. Anyway, I was relieved that it was a preschool friend because he has more in common with that age group. So off we went to an indoor jumpy party.

We were the first group there, so it was nearly empty in the beginning. My buddy ran from one thing to another having a blast. He would get frustrated when he couldn't climb one, so I'd kick off my shoes and force him to try with my help. Once he got it, he was doing so great. I was proud of his physical ability.

Then another party started and open play as well. Before I knew it the place was crowded and loud. One of my buddy's preschool friends started playing rough with him - wrestling and pulling my buddy down. More than once, I kicked off my shoes and climbed into a bouncy to speak to the boy and stop my buddy from hitting him. My buddy started getting really frustrated and angry. He lets out this primal scream and just hits and kicks anyone nearby. So I scooped him up (haha. sounds so simple but he was in a bouncy not wanting to be picked up and he's 50 pounds) We headed out to the lobby for some quiet.

Then it was time to sit in the party room and eat pizza (which my buddy won't eat). He only wanted to pull the Angry Birds decoration off the top of the cake and he was losing his mind. So I decided to cut my losses and head home. We said Happy Birthday and Thank You. I forced myself not to apologize yet I still couldn't look all the other parents in the face. I don't want to see the look of pity or relief that it's me and not them.

I've been listening to parents of older kids feeling sad that their kid with Ds doesn't have the social life they want.  How their child doesn't get the invites to come over and hang out with the other kids. It can be hard thinking about years and years of adjusting our expectations and, lets face it, adjusting our life to accommodate my buddy's needs. But then he puts on fairy wings and a frilly skirt and runs around the house with joyful abandon... and that joy is so great.