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.

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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.