A plea to moms with typical kids

Today I took my boys to all star gymnastics for their "free play" time. I thought it would be good for both kids and I very rarely get to take them to stuff like that because of crazy schedules, but today happened to be free. Two of my girl friends and their little ones, also special needs, joined us. After being there for just a few minutes I could tell I was going to have a problem with two little ones that were running around. One of which was wild, in your face, very aggressive while her sister (yes, that's right, they were related) was younger (if i had to guess i would say just over a year old) and was curious like any other one year old, and was testing her boundaries, which apparently were pretty far. She pushed Karsen and Karter out of her way to get on the slide before them. Ok, no big deal, typical toddler behavior. But what was bad, which was clearly the root of the problem, was her mom sitting right next to the slide NOT SAYING A WORD to her daughter about what was wrong and how to do it the right way. Her mom was so much in her own world and not paying attention, the littlest one started to fall from the top of the slide, would have fallen pretty far, but was saved by a coach there. Mom didn't see any of it, not even the part where the coach helped her back up the slide. This was one of very many things her children were doing. I really don't need to get into what else what happened while we were there, what I feel like I need to touch on being more attentive and proactive. Whether you chose to have children or had a "oopsie" we all have to step up to the plate. Being a parent is the hardest, most exhausting, most physically and emotionally demanding job. You only get breaks if you pay and schedule them and you are ALWAYS on the spot. One of the best things I've heard was to show your kids you make mistakes too. It happens, we aren't perfect, and when I have raised my voice at Karter and let myself get too mad I waited until I cooled down and told Karter that I was sorry and I shouldn't have done that. It really hit somewhere for him and for me as well. Ok, I'm getting a little off track here. What I wanted to talk about is the parents that go to the park with their kids, or a free play at a gym and take it as time to relax and ignore your kids and let them run around like wild beast. Wrong! It's never a break, you're kids are waiting for you to not look, they are waiting for you to not pay attention so they can act like beast while knocking kids over, pushing kids out of the way and using equipment improperly. Do you see where I am going with this? Your job is never done when you are present. What made me more mad about today's situation more than anything is me telling these kids what to do all while not hearing a peep out of their mom and having my boys be hurt by them. Yes, I am the definition of mama bear, and I will attack. So, after I left today I really wanted to blog about this mom (well. I guess I already did) but then realized I really needed to blog about how to help yourself and your kids understand and play with special needs kids.

First off, no two special needs kids are the same. So not all of this will apply to certain special needs kids. Some kids may be blind, some maybe deaf, some may be mute, some may have a physical delay or a cognitive delay. Here's a few suggestions of what you can do when you go to a park or a play date and you see a special needs kid.

1. Always, always remind your kids to be gentle.

2. Talk to them, say hi, encourage your child to say hi.

3. If there is a chance to do something sitting with a child that isn't mobile, sit down and play sitting beside each other.

4. Talk to them like you would any other kid, chances are they understand you they just don't know how to communicate back.

5. Ask mom what their child likes to do and encourage your child to help in that kind of play. 

6. Try to keep playfully mean comments out, if your child makes one, correct them. (Example: Karsen has been called drool monster. May seem fun to the kids but it hurts me in a place not many will understand)

I guess as I start to read these to myself I can sum it up into a few things. Always try to include each child in your play. No one likes to be left out. Tell your child why that child can't play certain ways, encourage your child to talk to them, treat special needs kids just like you would a normal kid, show them compassion and friendship. Shouldn't we all be treating each other that way?

The next opportunity I get, when around a mom like I was today, I just may say something to her in a loving way to encourage her to be a part of it, to be a part of her kids and be a part of the community. What will you do differently? I know I will be leaving my phone in the car while at a park, I will be wearing yoga pants and a ponytail so I too can play on the swings and slides. Nothing in that moment is as important as your kids. Soak up every ounce you can, they aren't going to be little forever.

We have a full time walker

It's official, Karsen has taken off. Today, Karter had a preschool field trip at a water park. Perfectly enough, Karsen's pt got cancelled because of a staff meeting so we were all able to go. Karsen was everywhere! He was walking on the cement (which still makes me nervous) and then continued on uneven surfaces like the wood chip area of the playground. I was impressed. He didn't butt scoot once. In fact he would get mad when he would need to sit down for a second. It was exhausting for me but also really near to see Karsen keep up with kids just a bit younger than him. Next, we just need to tackle going upstairs and getting up on his own to stand without holding on to things, then it will be really fun at the park. I feel like we are finally moving out of baby zone and into toddler territory. Well, we've been here and he understands more than kids just entering toddler territory, so I guess it just feels more comfortable to be here now. Happy to be here, proud to be here, and oh so ready.

Waiting to hear back

We had our first appointment today with Karsen's newest member on his team, his pediatric ENT. It went surprisingly smooth.  Both boys were angels and Karsen even put up with the doctor looking down his throats and ears. I was impressed. The only hiccup we had was finding Karsen's new fear of elevators. He would not let go of me, holding on as tight as he could while screaming his head off. I don't blame him, I'm not a huge fan either. I came to the appointment guns a loaded. Had loads of pictures of Karsen's rash along with our attempts to stop his drool/ash in any other way. What do you know, I didn't need a single one! The doctor actually listened to me! So we have a plan, we are deciding to go the Botox route. I know, Botox for my two year old?! Pretty cool. The doctor wants to talk to a fellow pediatric ENT to find the best route to take, then he's calling me back to schedule the appointment. Karsen will have to be put under for this but it isn't surgery. We're hoping this will be the trick to stopping it for awhile, and when it slowly wears off he'll be able to learn to control it more. 

So all in all, it was a good trip. Mission accomplished and I didn't even have to squeak once ;-)

Can't keep up

I'm proud to say I almost can't keep up with the amount of signs that Karsen picks up daily. It seems like he picks up a new one a day to every other day. The communication frustration has really gotten a lot better. Now I just think we are dealing with normal toddler behavior and outbursts. There's still that extra frustration level for him that I think is more than normal toddler behavior and yes I still get stared at but it's not as bad as it use to be. Here's what Karsen currently signs: 

Water

Milk (only a handful of times)

More

All done

Bye

Yes

No

Cereal

Thank you

Please

Bubbles

Chicken (I think he thinks all birds are chickens)

Dog

Hot

Go

Up

Down

Were still working on:

Mommy

Daddy

Want

Cracker

I'm looking for suggestions of some signs to work on too. If you can think of any I'd love to hear from you.

On another good note, Karsen is starting to get really brave and is walking across the living room to other furniture. He's doing so good. We had a bit of a set back over the weekend. He and I both got sick and it always seems he looses a bit of motor function when he get sick. But hey, don't we all just want to lay around and be slugs when we are sick?

Things are really starting to move along here in the Williamson house. We are started to get use to our new normal of preschool and therapy sessions. The best part? I have two hours during the week where I can read a book or go for a run, do whatever I please in those two one hour time slots. It was quite nice today to start reading a book again, for fun! Haven't read a book for fun in a while. 

One of Karsen's favorite places to be, our garden. He loves playing the rocks while I pick my veggies and pull the weeds. I love my country boy.

Six flags walkin' fun

We had the opportunity to join my friend and her four kids to six flags on Monday. It was a day for Karsen, a day to celebrate him walking and let him enjoy six flags to its fullest. He had a blast! I was a little bummed after the first four rides not a single person asked to see him walk three steps. Poo! But then the very last ride we went on they asked for Karsen to take a few steps before getting on the ride, I was thrilled. My over joyed response was a dead five away that he had just started walking. 

Here's a few pics from our fabulous day!

He was so excited about the dolphin show, he kept signing water and even said "wawa" twice! 

I'm beyond blessed to have my friend Amy in my life. Her daughter is in Karsen group class. There was no mistake putting us in each others lives.... Well no mistake in God putting her in mine at least. ;-)

He's walking

After a few bad days, things are starting to look up. Yesterday we had an appointment with Karsen's eye doc. While waiting in the exam room Karsen decided to free stand for a minute and a half (yes, I counted). The doctor came in, was shocked at how well Karsen was doing considering his medical chart and also said there's a good possibility his eyes may have strengthened enough to no longer need the glasses. Twelve more weeks and we'll check it out to see. Woo hoo! First good visit in a while. 

Bright and arly this morning we headed to pt. Karsen did great. Didn't fuss one bit. Off the run a few errands then to group. Well, after I was telling a dear friend that Karsen free stood for a minute and a half yesterday, he just started walking. I'm not joking, he took 8 steps, then 15 steps then was walking all the way across the room. I got chills, I started getting chocked up. We both needed some good news. He was doing his best by showing off for his speech therapist by signing up a storm. Today was a good day. I have a feeling the rest of this week will follow. 

My dear friend, Amy, has season passes to six flags and guest passes as well.  Apparently they want kids to be able to take three steps before you can get on their rides. Well, looks like we're heading out Monday. Quite the treat for my little man, and boy does he deserve it.

One of those days

This morning we all woke up bright and early and for some odd reason I thought today was a good day to keep technology away from the kids, no tv, no cell phone, no iPad. Someone remind me again why I did this?.... No, really I'm glad I did, I needed to start somewhere. So, we started our day with Karsen screaming and pointing at the tv while Kuper and I made every attempt to distract him with toys, food, books, you name it. That was only the beginning. 

Off we went to Shriners. Not all of us, just me and the boys (Kuper works Monday-Friday and frequent Saturdays). I have never had a problem going places solo, well, solo with the boys that is. When I go places really solo, no kids, no baby, no child stuck to my hip, tugging on my pants, it's weird and awkward and I don't know what to do with myself. That's a whole different topic I won't get into today. We drove to sac, me and the boys, and I forgot my coffee.... This day was not going to be good. When we first showed up we were immediately moved over to radiology to get an X-ray  of Karsen's hips. We skipped it last visit so they wanted it this time. The hips and legs are good! The we waited for our doctor. We were fist seen by two other doctors, one was there for training. We went over Karsen's full history. I didn't mind, I'm all for educating doctors more especially when it comes to infantile spasms. After those two left, in came our regular doctor. At this point Karsen has had enough. He's been held down to a able for an X-ray, checked range of motion on all limbs, stretch, weighed, blood pressure checked and not another doctor wanted to look at his rash, which was on his leg today as well (because of drool soaking his pants, it's that bad). I had the hardest time hearing the doctor talk to me because all I could hear was Karsen screaming and crying, all while he continued to hit me and pull my hair and Karter is laying on the floor playing with his toy, yes the nasty, germ ridden dirty floor... I started to feel it creep up on me... You know, that feeling you get when it's all too much.... It was the chaos that was causing is, it was what the doctor was saying. In the midst of screams, car noises and hair pulling I could hear the doctor telling us to try this cream and let him know if it doesn't work. ARE YOU KIDDING ME?! It started to creep up even more, my adrenaline started to pump. Out walked the doctor to get this cream, and all I could do was sit still. What the heck do I do?! In comes the doctor, he hands me the cream and asks me if I have any questions. This isn't a first for me, and I'm sure it's not the last but I just started crying. I opened up the flood gates. In that moment I think the doctor knew he wasn't going to be able to us the cream and call it good. After 15 more minutes of discussing our options (while both kids are not behaving how I would wish, but I honestly didn't care at that point). We had decided to start the process for a referral for an ENT doc. Thanks goodness! We are making some movement here. We left on a good note, I wiped my eyes,  picked up my truant rum throwing, back arching, face hitting, shirt ripping toddler, and my sweet germ covered child and headed for our car.  We got loaded up and started to make our way toward home with the plans of running a few errands. 

Met my girl friend for lunch, both boys got a quick power nap and seemed so much better. Got seated(but apparently they sat us in the wrong spot) and decided to move us. I really feel bad for the girl but I WAS NOT HAPPY! Well, the move must have not been ok wi Karsen either. The melt down began, in the middle of the restaurant. Thankfully Karter was coloring and writing K's, happy as can be. But it took a solid 10 minutes of screaming, and I mean screaming, and me trying everything under the sun..... Except for one thing. Out comes the phone and on goes Mickey. I caved. I had to. If I didn't want to completely loose it Mickey had to be out on. In the midst of the 10 minutes of screaming, I started crying AGAIN! Ugh... Public place, plenty of people staring at me because of Karsen, and my poor friend that has no kids, dealing with what a circus my day had been. Mickey cured all.... For about 30 mins. It was 30 mins of peace and I was able to gain some composure. 

We left and started our few errands. Babies r us, Rodgers jewelry, gas station, then I decided to take the boys to the park. But before all of that Kuper called me to see how the appointment went. I lost it, AGAIN, cried like a baby. What on earth is wrong with me?! Nothing about this has been easy. No moment in raising Karsen did I say "wow, that was a breeze." In fact, I think in some ways it's gotten harder. I wasn't crying for me (ok, maybe some of it was)but crying because I can see how badly Karsen wants to talk, walk, not drool, all stuff other two year olds get that comes easy. I hate that he has so many appointments that he clearly hates. After I got off the phone with Kuper, Karter asked me why I was crying. I proceeded to tell him "I get sad every now and then for you and Karsen. I worry that I won't be a good enough mommy. I want you and your brother to be the best of friends and protect each other and be there for each other." He hopped in my lap, held me tight, told me "its ok to cry, it's ok to be sad. Karsen and I are already best friends, he's the bestest ever. I love you mommy." I'm crying now just haring that again in my mind, in my heart. I've been busting my butt with this kids when I fail to remember they are already bonded, they are Gods perfect gift. And yes it is more than ok to cry and be sad.

We finished our errands, hit the park and burned off some energy. It was exactly what I needed. I needed to see the joy and happiness in both my boys. Pushing each of them in the swings side by side, tickling them nd making them laugh was the best dose of medicine I could of had. No drug can give you the high that I got today from that brief moment. They are beautiful, they are driven, they are wise, they are compassionate, they are selfless, and they are only kids. Maybe I should start taking cues from my kids because, wow, they are pretty amazing.