A couple weekends ago there was an activity at a local “Fun Center” for families with kids who have special needs. It’s nice to have activities like this where the entire facility is open to just these families. Wes gets let off easily sometimes as having an excuse for his behavior because clearly he has Down syndrome. His disability is obvious, but not every kid’s struggle is so easily labeled. You see kids sometimes having meltdowns in crowded places and you may wonder what’s wrong with him, or with his parent, when really he has a disability such as autism that is harder to identify. At activities like these, everyone understands and accepts and is patient. It’s nice.

We took Wes and Carissa to the roller skating rink first.

Wes was excited by the idea of it, but not by the actual skating part.

Carissa was acting very put-out and sad.

So we didn’t spend long at the rink. I would’ve loved more time to practice my skating and go a few rounds with John, who is an excellent skater from his days on the ice hockey team in college.

Next we went to the area with the bounce houses. Wesley’s specialty! I always forget how fearless and boundary-less he is with physical activities like this. He climbs the highest bounce houses, even the ones that make me nervous with their height. I usually climb right behind him to make sure he’s safe, but I’ve never seen him in danger of falling. Here he is in action:

Carissa was still out-of-it and only played a little. I took her down a few slides.

Wes had a ton of fun and was perhaps a little over-excited. Carissa wanted to go home. So we finally left. We were able to get away without a total meltdown from Wes by promising him ice cream. Carissa was asleep before we even got to the drive-up window that was only a few blocks away.

Later that afternoon Carissa threw up a few times and had a fever. So that explains her sad morning. Poor kid. It just wasn’t her day. But we’re still glad we had that time together as a family.

Because what are beds for?

What happens when ice cream becomes paint and Mom’s not around.

Carissa trying to jump rope in a toy store.

Warm weather means no pants!

Letter Soup. Carissa is a master chef.

The cutie Elizabeth is four months old and getting quite good at many things like holding her head up, gnawing on her fingers, and I even caught her rolling over once from tummy to back. We’re not sure but think she may be getting a tooth. She is still the sweetest baby girl we’ve ever met. We count her as a great blessing every day.

Wes likes to hold his baby sister. When he hears her cry he’ll go up to her and replace her binkie, or play with her feet and say endearing things like, “Oh goodness!”

Well, this was Carissa’s doing.

Carissa painting with water on the backyard shed. Those are leaves in her hair. The rocks in the water table are Wesley’s.

Miss Happy Face.

Carissa’s favorite place to be.

Oh, dear. We lost our kids again today. We’ve had a few scary times when Wes has been missing, including from our own backyard and from a hotel in London, England. It is never a good feeling to realize your kids are gone.

Today I have a cold and everyone was in bed. I was going to lie down, too. If the kids woke up before me I didn’t want them to go into the baby’s room while she slept (as they sometimes do) and either wake her up (as they sometimes do) or pile blankets on top of her (as they sometimes do), so I went downstairs and took the child-proof doorknob cover off the door leading to the garage to put on the baby’s room door. It gave me peace of mind to know the baby was safe, so I could rest.

I actually never fell asleep, but what I didn’t know is that my two kids never fell asleep either. I just thought, “Gosh, they’re being quiet” as I lay in my bed in the room next door. After about a half hour I went to check on things and discovered 1) no kids in bed, 2) the baby’s door room was open (baby was safe), 3) the kids were nowhere in the house, and 4) the door to the garage was open AND the garage door was open. Escape opportunity.

Cue the panic, cue the “what-if” thoughts, cue the worst-scenario images racing through head. John was home so I called to him and we ran out in search.

I called a neighbor who kindly interrupted her day to take her two little boys out and help look too. I ran toward the park that’s a block away, John was a bit ahead of me, and I arrived in time to see him walking back home with both kids in his arms.

Relief.

Carissa was crying because she had two owies on her foot (no shoes, either of them). It seems like they exited our house and followed our side-street in the less-busy direction (thankfully; the road right by our house is very busy). My neighbor who was helping look said she thought she noticed a “trail of Wes” in the form of her lawn decorations pulled out and strewn across the grass. That kinda sounds like Wes. So at least they probably weren’t near a very busy road, and once they saw the park, obviously they went there. It’s probably a good thing Carissa hurt her foot because it made her sit down and cry, and Wes stayed near her.

Disaster averted. Each got a stern talking to about how they are not allowed out of the house without Mommy or Daddy. I think Carissa understood. I don’t think Wesley gets it. It’s hard to tell.

So. We get another day with these guys.

This month my parents came to visit. We had lunch with them one afternoon at Sizzler. When the kids saw the ice cream machine it was like they had hit the jackpot.

Wes and Carissa had been asking to go back to the car wash ever since I first took them in November, just before Elizabeth was born. I never took them before because I thought it would scare them (Wes is sensitive to loud noises). Turns out I was wrong! I acted all excited and so now they think it’s cool. So I took them again. In spite of the semi-scared faces, they enjoyed it.

Carissa lassoing a wild shoe.

Elizabeth sleeping. She is three months now. She is a good, happy baby. I don’t really keep track of her hours sleeping, but it seems like sometimes she’ll take one good, long nap during the day that lasts 3+ hours. At night she’ll fall asleep between 9:30 and 11:30 and I usually only have to get up with her once in the night, around 4-5 am. I keep a portable DVD player in her room, and I have watched many, MANY movies in the last three months. Her hair is thin and delicate and kind of balding in the back. I feel a little bad because she had cradle cap, and I gave her head a good scrub, and now she’s kind of balding in front too. I hope it grows back before long! She really is a good baby and smiles often. She has been healthy, and we feel lucky to have her.

I don’t have a picture of this, but we just noticed that Wes is getting another tooth. He’s 5 1/2. His teeth have come in at weird times and in weird orders, which is normal for kids with Down syndrome. His first tooth didn’t come in until 19 months. One of his canines (I think) never came in, and the dentist wasn’t sure it every would. Maybe it didn’t exist. But, it’s coming in now! I don’t know that there’s even room for it. I should maybe take him to the dentist again. Joy, oh, joy.

Two and a half weeks ago I somehow summoned up enough courage to start potty training again. In August I worked on it with both Wes (almost 5) and Carissa (almost 2). I gave up after 2 weeks. It was EXHAUSTING. Neither kid was willing enough to cooperate, and I needed a break. So this time I’ve just been focusing on one kid. One day I showed Carissa her little basket of underwear (Dora and Hello Kitty, of course) and told her she could wear it if she used the potty. So she ran right into the bathroom and went, and put the underwear on.

John and I visited Walmart and bought a few books and toys we could use as incentives. I’ve been trying different things to see what works. We keep a sticker chart where if she goes 5 times without an accident she gets a package of fruit snacks. If she has an accident we take the stickers off and start again. During the first couple of days I thought she’d never earn anything. But then she did. After that we set it up so if she went 10 times without an accident she earned a toy (or “present,” as she calls it): a Dora the Explorer book that plays music. I really thought she’d never make it. But then she did. And she went on to earn another 10 stickers and get a second book.

I was frustrated because I would have to ask her all the time if she needed to go potty and basically had to make her go and sit every hour. My neighbor told me that her 2-year-old boy who was potty training tells her when he has to go. Carissa wasn’t doing this. I asked her how she got her son to do that, and she said the magic was in the mini-marshmallow he got for telling her he needed to go. I invested in a package of colored mini-marshmallows. She gets one (PINK, naturally) if she tells me she has to go, and another one for going. We would practice: “Now what do you say?” “I hafta go potty, pwease!” I wondered if she would get it, and after a few days, she got really good at it. Now I don’t worry about her having accidents during the day. She’s pretty good at recognizing her need to go and coming to get me when she does. I’m really proud of her progress!

We’re still working on the nighttime. She wants to wear underwear to bed but she doesn’t always make it through the night. I get a little tired of the laundry, and changing her and her sheets in the middle of the night when I’m tired.

The other thing we’re working on is poop. She wasn’t being so successful at using the potty for that, and didn’t seem to care, so I made a separate sticker chart for it. If she went poop in the potty just two times without an accident, she would get a really awesome present: A family of ponies. I had originally pulled out a little ambulance that makes noise, which she seemed keen on, but no progress was happening. So then I showed her the pony toy. Whether by accident or because she wanted it enough, she got her two stickers and earned her present. She was so thrilled! She ran and told Daddy and then we sat down together to open it. She was all smiles as she combed the pony’s hair. It came with a mommy pony and two baby ones, plus a comb, mirror, hair clips, and a battery-operated hair dryer. She plays with it all the time. It was so rewarding to see her earn something that made her so happy.

Next I’ll have to work with Wes. I think he’s probably capable of being potty trained, but I’ll have to find the right incentives for him because it is so much easier to just use a diaper. And he doesn’t really care about wearing underwear like Carissa does. But it’s nice for now to have one less kid in diapers. Two is nicer than three.

This month:

1. Carissa got her first taste of cookie dough. Her first taste because she’s allergic to eggs so I’ve never given her a taste of any kind of batter or dough that has eggs in it. But she clearly wanted to taste whatever I was mixing, so I looked up a recipe for eggless chocolate chip cookies. Instead of eggs it calls for cream cheese. Other than that, it’s a pretty standard chocolate chip cookie recipe. Instead of butter I used coconut oil, which is a healthier fat option. And they turned out great! Soft and chewy. Carissa was a happy cookie-dough eater.

2. Carissa learned how to use scissors. And boy, is she good! It’s a milestone that makes me happy-sad. Happy because “scissor skills” (as the schools call it) is an important skill to have, especially as she enters school later. But sad because her older brother Wes has such a hard time with the scissors still, and he’s three years older. She picked up the skill so quickly, without me even realizing she was learning it. Wes likes to try to use scissors, so he’ll get it someday, but he needs a lot of help. This isn’t unexpected or anything, for a child with Down syndrome. It just blows me away sometimes how fast she can learn something when it takes Wes so much longer. He gets it in his own time, in his own way.

3. Carissa has started to ask questions. “Why, mom? But WHY?” It’s cute. So far. She also asks things like, “What is he doing?” It’s another notable milestone. Wes has never asked “Why?” but he does ask sometimes, “What is that sound?” He’s not big on questions.

4. There has been much kissing of the baby. Elizabeth is 2 months old. She’s smiling and getting bigger. She weighed in at 10 lbs at her 2-month checkup, with a healthy rate of growth. Wes likes to hold the baby’s hand like she’s waving at us and say, “Hi mommy!” He is very gentle with her and is good at replacing her binkie and saying sweet things like, “It’s OK, it’s OK.” Carissa likes to play with the baby’s toys. She lies next to her on the floor and basically thinks Elizabeth’s play things are her own.

Carissa is two.

Sunday best (including Wesley’s tie).

A Sunday stroll in the backyard.

Feeding her doll (poor doll).

Hanging her underwear in the closet (her idea, not mine).

Sleeping. Never so peaceful as now.

Putting Band-Aids on herself and her doll. She doesn’t like to wear Band-Aids when she actually has an owie, but considers them more like decorative accessories to be worn at her own discretion.

Putting on multiple Pull Ups. She often prefers Wesley’s to her own. She was not happy when John snapped this photo.

Helping her doll use potty.