Tag Archives: Sensory Processing Disorder

Good friends, good food, good wine

Sometimes you only need one of the above, and sometimes you need all three. Yesterday was a day I needed all three. I didn’t see my breakdown coming. Usually I do. Usually I’m at the end of my rope, exhausted and it’s been building for days. I was not prepared for today. I’ve really reached a point where I comfortable with who I am and who Molly is. There are definitely days that are harder for others, but I understand her, I’m ok with just her being her.

There is however, the “A” word that hangs over us. Austism. There are times when I don’t need a diagnosis, why would it matter? We have the therapies we need, we have support, but we don’t have closure. It’s hard to gain acceptance for something you don’t have. Earlier this week I spoke with a mother of a child with autism and had a rude awakening. She asked very specific behavior questions all which I answered “yes” to. Never once did she hint that Molly was autistic, but I knew these were the same challenges she faced with her child. That was a hard day. No diagnosis also means I can stick my head in the sand and ignore what is often staring me in the face.

I was up half the night with the kids. First half of the night with Molly, second with Charlie. I’ll admit it, I was tired.

I wasn’t prepared for our playdate. In fact, I was underprepared. We were going to a familiar house, with familiar friends, what could go wrong?? We just went a birthday party and Molly didn’t even notice if I was there, she played happily with her school friends. And that is where I failed and that is why her quirkiness left us sitting in a chair crying. We may have gone to a familiar house but not everyone was familiar and Molly, well, she just couldn’t find her place. It was loud, there was a lot going on, she wasn’t quite old enough for the girls and was too much of a girl for the boys and she felt alone. Her inability to survive in the chaos echoed loud and clear into my heart and I wanted to help her, I wanted her to have fun, I didn’t want to be in the same place we always are and I didn’t know what to do. I didn’t bring headphones, I didn’t have a suggestion that was suitable and I couldn’t go bossing around kids to play with her. I hate being in this situation. And while I was trying to hold myself together and figure out what to do next, I had help. I didn’t ask for it, but I got a hug and it was all I needed to break down and start crying. Then I got another pair of arms to hold the crying four year old girl and then I started crying more because it was nice to have help. And it felt great to just be loved.

Then I remembered there was a mom there I had only known for twenty minutes. And then another new mom came through the door. And then I felt slightly silly. They don’t know our struggles, they didn’t realize we had come so far and I was frustrated to be back at the starting point again, but we are all moms and we all struggle so I felt blessed that neither blinked an eye or skipped a beat. We poured ourselves some wine, started munching on some yummy food and I pulled myself together through great conversation.

It warms my heart to know we are both being raised in a community of acceptance and love. (and wine)

Everything changes

Most of my mom friends can agree that we don’t like change. And by “we” I really mean “our kids”. I live in a house with one child that could care less about changes. School? Whatever. Daylight savings? Bring it on. Christmas break? No problem. Then there is the other one. I recently wrote about a rough week where I had been bitten, punched, scratched, and more. But that post was only the tip of the iceberg. It was a 2 box month. Boxes of wine, that is.

Naturally, the first thing I ask when things go wrong day after day is “what has changed?”. The problem was everything changed. We stopped going to OT, we were discharged from behavioral therapy, it was Christmas, school was canceled, the list of changes never ended. Naturally we waited for school to start up again and our daily routine to kick in, but that didn’t help. We bought a sensory swing, that only somewhat helped. It left me scratching my head. What changed?

Then it hit me. Nothing changed for Molly, things changed for Charlie. Our little Charlie had a monumentous change that actually affected all of us. He stopped napping. Surprisingly Stampy and I loved that change. I never thought I would love the day we lost nap time but I do. I love not being bound down by the clock. No worrying about scheduling things around naptime anymore. We are free! That freedom though took away something special for Molly, her one on one time with us. Everyday when Charlie napped Molly got distraction free attention from us. We read, we played games, we did crafts, she watched TV while I played on Facebook and Pinterest, but it was quiet and down time. She lost that. She lost that special time, she lost that time to herself. Now her whole day revolves around sharing everything from toys to attention.

She didn’t like it. I can’t blame her. I miss my “alone” time too.

When the going gets tough

We’ve had a tough week. That might even be an understatement. In the past week I have been bitten multiple times, scratched, punched, kicked and had my hair pulled out. 

I wasn’t kidding. It was tough.

Oddly, I don’t feel that these are the times that test me as a parent. 

It’s easy to be patient and empathetic when your child is suffering. When she is so far gone that rational thinking is in another universe there isn’t much you can do but be patient. Also, two irrationally angry people rarely make good decisions. So I show her empathy hoping that she learns how to react when you are upset. I show that I love her at her worse. I show her forgiveness. 

Then I get the little girl that sat next to me at church this morning. Out of her element, unsure of her surroundings, scared, but holding my hand and snuggling into my leg. She didn’t let go the entire time. Although she rarely verbalizes her love, she embraces me when she’s scared and lets me know that she feels secure with me.

That’s when I know that I’ve made good decisions. It’s these moments that will give me the patience the next time things get tough.

 

Sensational Christmas morning

I remember being a kid and waiting not so patiently for Christmas morning. I remember my brother and I trying so hard to stay awake to hear Santa and waking up at 4 am and waiting until our parents would allow us to go downstairs. I couldn’t wait for the presents, to see what exciting things Santa left. Christmas morning was awesome.

Naturally when I had kids I couldn’t wait to relive that moment. I was excited to see the reaction of all their new gifts and toys under the tree. This video is a pretty good representation of every Christmas morning, except the fact that no one is crying this year and it didn’t take 20 minutes of coaxing to get the kids even near their gifts. In fact the kids actually opened their gifts this year, so it is a step in the right direction. I have high hopes for Charlie next year that he will actually be excited on Christmas morning. I only assume Molly will be questioning the existence of Santa by then. This year she already wants to know why Santa built her a chalkboard last year on the wall and this year brought her one on an easel. Santa needs to get his stuff together.

On the bright side, we don’t have kids waking us up at 4:30 AM to collect their bounty.

10 Things SPD has taught me

While I was pregnant I read a lot of books. Books about pregnancy, books about parenting, about sleeping, about feeding, etc etc etc. Then Molly came and I learned that I wasted a lot of time. Molly doesn’t fit into a mold and she definitely doesn’t care about what the latest experts have to say because she has her own game plan. Of course it would help if she could hand over her user manual, but she won’t, so until then I just watch and learn and hope I’m picking up the right lessons in life.

1. Cereal is appropriate for any meal or snack. Also, surprisingly, you can survive on said diet and have rock hard abs. I might make millions one day from marketing it as the newest diet fad.

2. Surround yourself with people and things that make you happy. Never in my life have I met someone that openly avoids things and people they dislike. I think how much better life would be if adults could have the same kind of freedom.

3. The world is a scary place and there is nothing wrong with carrying someone that needs your help or asking to be carried.

4. Headphones don’t need music attached. Sometimes they just block out the world. Maybe I should just buy ear muffs for her.

5.  Sleep is vital. I actually knew this one and am really happy my children agree and get a good 12 hours a night. I can be kind of bitchy and whiny without sleep.

6. Noises are awful, unless she is making it. Apparently loud banging or high pitched shrieking is okay if you make the noise. Anyone else is unacceptable.

7.Sunglasses inside aren’t just for hangovers

8. Pick your battles. This goes for the kids as well as adults or other parents. Sometimes it really is easier to say “Ok” even when you don’t agree and save your energy for the things that matter.

9. No matter what the weather is outside, clothing is optional inside. .

10. Rules are made to be followed. However, feel free to bend them as much as you can get away with. Never in my life have I met someone that can follow rules so closely but then manipulate her way into breaking them without actually breaking them. I need to learn a few lessons of manipulation from this girl. Case in point, we started a house rule about inappropriate touching. After discussing it Molly asked for a hug and then proudly announced that “My chin touched your boobies!”This girl is clever.

Caught with my hand in the cookie jar

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In my previous life I’ve been known to eat. There was the time I ate an entire apple pie and the time I ate the entire wholesale club size tub of cheese balls and I have yet to live down my order of 10 soft tacos from Taco Bell. In my defense, I was a swimmer and those tacos are so small! Since I’ve aged and started paying for my own groceries, I’ve learned to tone down my appetite a little bit. I’ve also learned to do food math like “I have ten cookies, if I eat two cookies a night that means I can have cookies for five days”. Five days of two cookies sounds much better than one day of ten cookies. (note: this math does not work when married to Stampy who will eat your cookies as a late night snack)

So, Stampy and the kids made cookies Wednesday afternoon. Delicious, homemade chocolate chip cookies. On Wednesday and Thursday they were eaten in sane amounts, properly doling out cookies as desserts for everyone. Then last night happened. There were three cookies left. I could eat one cookie and save two so each kid could have one more cookie or I could eat three cookies. I chose the latter. I can’t even remember the last time I ate three cookies in one sitting and now I don’t know why I don’t do it more often. They were delicious! (I do have the best chocolate chip cookie recipe) Of course there is the littlest bit of mommy-guilt kicking in that I didn’t save the kids a cookie, but I try not to let that get to me. I didn’t even eat their Halloween candy!

I forgot one tiny little detail about Molly. She notices EVERYTHING. She is the most observant little girl in the entire world. Her ability to spot patterns and shapes in her environment is part of what could put her on the spectrum. She knows when we move things, she noticed when her OT office changed a painting on the wall, she knows where everything is in the house. She sees all. This is a problem when you eat the last of cookies. I wasn’t prepared to answer this question “where are the cookies?”. 

Me: They are all gone

Molly: Where did they go? There were 3 last night in the container. Who ate them? Who ate ALL the cookies?

Me: I did.

I was then faced with the biggest look of disappointment ever. It was like she was sensing my built-in guilt and was taking full advantage of it. I hate that look. It’s the same look I got when I told her that 679 people finished before me when I ran my race. A look of disgust and disappointment in my actions. 

So, I told her we would bake cupcakes. Problem solved.

A Week of Thanks

Every November I try to say what I’m thankful for on Facebook on each day of November. I’m not going to lie, we had a tough week this week but I still managed to start out being thankful for my kids today. In the grand scheme of things, they are pretty awesome, quirkiness and all. However, I feel like I had a lot of be thankful for this week and I feel like I should have started out giving thanks earlier than November first. So, I will share here what I was thankful for this week.

1. Yoga. On top of it’s breathing and relaxation techniques, I’m thankful for the flexibility and strength it has given me. Without out, I don’t think I would have been able to wrestle Molly into her car seat, twice, without all that extra bending ability and core stability.

2. Wine. This should go without saying, but I’m extra thankful for the nice people at Bota for putting it in box form. And making that box slightly classier than Franzia.

3. Radio. Nothing drowns out a child kicking and screaming than Top 40. To be honest, I don’t even know what I was listening to, I couldn’t hear it over the screaming.

4. Swedish Fish. I’m thankful to whichever neighbor gave us Swedish Fish in Charlie’s bag on Halloween. That way at every other house when he handed us a Snickers and said “open this” we could give him a fish and subdue him until the next house.

5. Sleep. I cut my coffee intake by half this week and although I feel much better physically and seem to have less brain fog, I can’t sleep. I’m thankful for it and hope it returns soon.

6. Preschool. Especially the aide in Molly’s class that peeled her out of the car kicking and screaming as if it was nothing and she was happy to see her. Let’s face it, we all know she was thinking “oh Jesus” or maybe not since it’s a Christian preschool but I’m sure whatever her thoughts were, they weren’t great. No one could be excited to have that child in that state being handed to them. I’m her mom and I would run the other direction.

So, there you have it. What I am thankful for this week. I wish I could be thankful for Stampy bringing home some food from his happy hour, especially a cheese plate, but I know that won’t happen.