Tag Archives: Mollinator

You have nothing to worry about

At 9 months old, I informed our pediatrician that I was concerned because Molly didn’t respond to her name or really turned when we talked to her, but I knew that she could hear. He replied with “the important thing is that she can hear, you have nothing to worry about”.

At 20 months old, I told the nurse practitioner that I was concerned about some behavioral issues Molly was having. She replied with “It’s very normal at this age, you have nothing to worry about”.

At 2 years old, I was concerned still about the length of temper tantrums we were having and the face that cutting her hair seemed to settle them. Again, I was told “you have nothing to worry about”

By 3 years of age, I said I was concerned that she didn’t tell us she was hungry or thirsty or communicating, wasn’t potty training, was screaming for hours on end. After spending 10 minutes with us, the pediatrician said “She’s not autistic, you have nothing to worry about”.

Only I did.

I had everything to worry about.

She is autistic. Her behaviors were not normal development and I was not being heard. So, I did what any sane person would do that was quickly losing their sanity and went somewhere else for help. But the words still rang loud “she’s not autistic”. I believed those words.

We spent 2 1/2 years in and out of therapies and met with multiple specialists, all who said the same thing, “I think she may be autistic”. I believed those words.

I was confused and honestly, I don’t think I wanted to know the answer. But we hit a turning point. We hit the point where we needed a diagnosis to know which therapy road to travel, which specialist to see and to get a lot of this covered by insurance. So, we went.

We traveled over an hour for several appointments to a wonderful pediatrician. One of the first to spend significant time with Molly. The one who gave us the answer we needed. The answer that Molly needed. The answer that seems to make our life harder, but ultimately will make our life easier.

She is autistic.

She is sensational.

We had everything to worry about.

Nobody likes change

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Once we are past the tantrum and everyone is thinking with a clear head I often say “nobody likes change” in my head. 99.9% of the time it’s in Ross Gellar’s voice and I picture him and Rachel fighting over the girl from the copy place. It makes me smile every time, which is good because at this point I need something to break the tension.

It’s true. We have a little girl that doesn’t like change and apparently two parents who are really bad about realizing something has changed until we are strung out and have lost all patience and are trying to regain some composure and patience. Then it hits us “oooohhhh, we had a new bus stop today”. Molly won’t ever tell us why she’s anxious or what has changed or how she’s feeling, it’s like a guessing game from hell.

You’d think we would better at picking it up the subtle changes to our day. After all, we are five years into living with a child that needs uber-consistent days and regular schedules but there are times we just fail at it. I don’t feel guilty about the failing, life is what it is and sometimes it means change. I just want to be better at preparing for the tiny things that will occur during the day that won’t seem so tiny to her.

Normally speaking, change brings about tantrums and the inability to function. She seems to have difficulty getting one foot in front of the other and putting two words together. Little eye contact is made on these days and there is a lot of crashing into objects around her. There are super strict routines that must be followed lest we break out into a 45 minute crying jag which always results in a loss of a shoe. Usually it’s this part of the tantrum which sends Stampy and I to the mental ward and we end up losing our patience. There are no incentives or rewards on these days to change her, it is what it is and it leaves us all drained wondering “what just happened?”.

Today, she handled change differently. Today she sobbed, hunkered down in her bedroom and clutched one of my old stuffed animals while she stared out the window waiting for me to come home. Schools were closed today. My in-laws are back to their babysitting duties for the first time in six months but my father-in-law didn’t come today, he always comes on Tuesdays. Molly pointed that out. Today was different.

Today was different in the fact that once I came home, Molly told me what she did. She told me what she didn’t like and told me how it made her feel. Today was one of the first days she expressed rational thought to her emotion and how it made her feel. And that is a big change. That is a change I love.

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.

Therapy Thursday: Expect the Unexpected

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Wow… today was a bit of a doozy. For starters we had a field trip to the pumpkin patch where Molly decided that she was terrified of picnic tables and had me hold her for the next twenty minutes. So, after being exhausted from tending to her all morning I decided for a nice quiet time activity. I’m tired and think I’ve hit the jack pot with a pumpkin painting activity so naturally there were tears (mine) and screaming (hers) and a time out (mine).

Anyone else have their 4 year old send them to a “calm down spot”? No? Oh, well, mine does. Honestly, I don’t mind the couple of minutes of quiet where no one bothers you.

I was super psyched that our social worker was coming today. I was having the internal struggle of meeting Molly’s needs and wants and feeling like I was failing big time at everything. Should I have carried her at the pumpkin patch? Did she really need fresh paints when hers mixed? Should I just have ended craft time before losing my temper??? I needed our counselor to talk me through it and keep me out of the wine. She listened then she questioned “what if this isn’t what a 4 year old should be doing?”.

Crickets chirp.

Oh. Even though I was having some concerns with some behavioral shifts, especially toileting and becoming more and more helpless, and the fact that her teacher had made more than one report home about some difficulty I was still telling myself that Molly was 4 years old. I also knew that in a lot of cases she is on par with Charlie emotionally, but it’s something else when it is put out in the universe. That looming question that I don’t have an answer for because I tend to dance around it on a daily basis. Honestly, I still don’t have an answer for it but I do know that what I have always suspected is right on. So I got over my punch in the stomach (which I asked for) and said “what do we do?”. For now we were given 3 options: do nothing and ride out this school year; have her retested through Child Find; or see the psychiatrist through our youth services bureau. I picked option 4: have our counselor talk with the teacher and observe Molly in class so we could make a more informed decision. Mostly because I don’t want to go through Child Find again and have her not qualify. The testing is long and exhausting for everyone and I can’t put us through that again and have the same outcome. It’s ridiculous.

So, that’s where we stand. Waiting. Waiting for an answer of where to go next. I have a feeling we will often be in this limbo with Molly so I should get used to it.

The Lake and The Water Tower

I hate the lake and the water tower. Especially today, after a rough evening home with the kids, I remember why I hate them. The lake and the water tower are 2 things that we pass on the way to OT and these 2 things can make or break our day.

The first time we went to our OT’s office, I had to map to find out where it was. Now, mind you it is a block away from where I worked for 5 years, but I still had to navigate my way there. Of course we went the shortest mileage, but longest time-wise way. It took 3 trips for me to realize there was a faster way. That’s right, 3. 3 trips to realize I was going the wrong way. I obviously need help. In those 3 trips Molly fell in love with a reservoir (the lake) and a water tower that we passed along the way. I suppose in her mind they are significant, but so is a tiny piece of string she finds on the carpet so I try not to actually comprehend her object’s importance. Trip #4 my brain returned and we took the faster, 1/2 mile longer way to therapy and it was a big mistake. HUGE. Molly realized that she hadn’t seen her beloved lake and we were going a different direction and the tears started. Not just any old tears. Full. Blown. Sobbing. She sobbed for 10 minutes then refused to cooperate with her therapist and she persevered about the water tower and the lake. For an hour. A week later for our next appointment she reminded me to go the right way. Now I always go the longer way to OT now and point out like a stark raving lunatic when we see each because God forbid she misses them because she’s distracted by something else.

These 2 things symbolize pretty much everything during our days. The inability to cope with the different and our need to over stress to keep her balanced. Every Monday I have a struggle as we drive our 20 minute drive whether I should point them out or just see what happens. Usually “seeing what happens” means “keeping your cool while your child screams” and a lot of days I just can’t bring myself to do it. After working all morning and having the kids by myself until bedtime, I just can’t add extra stress. Today, I forgot. I actually forgot about them. We were listening to music and I had 50 things running through my mind and I missed the lake. Aaahhhhh…… she didn’t notice! Oh, wait, she did. 2 minutes later she realized that we were passed it and she didn’t see it. The next 10 minutes she bawled. She missed the water tower because she was crying. She cried more. I wondered if I had wine in my purse. I did not.

You can bet on the way home I became that over zealous mom, “LOOK!!! THERE’S THE WATER TOWER!!!!! ARE YOU LOOKING??? LOOK AT THE WATER TOWER!” If I wasn’t seat belted in I probably would’ve done more gesturing and jumping.

And if it’s not a lake, it’s waving to people as they drive away. Or sitting in the exact same spot on the couch. Or brushing teeth before going to the bathroom. Or waiting at the top of the stairs for me to say “good morning” or one of her 10,000 other external rituals that keep her grounded, I have to know them all or face the consequences. I should probably start writing them down. Although chances are, I would never find time to read the list anyway. Instead I’ll just keep dealing with each tantrum and routine as they come in hopes that one day they just might phase out and I can finally breathe a sigh of relief.

Until that day, I will just have to invest in my wine purse.