Tag Archives: Autism spectrum

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.

Therapy Thursday

It’s adjustment disorder.

She has sensory processing disorder.

She is autistic.

She suffers from anxiety.

She has the emotional capability of an 18 month old.

This just tops the list of things we’ve been told about Molly. She has “failed” pretty much every standardized tests for diagnosing any of these conditions.

She can’t control herself when routines change. She’s rigid. She doesn’t communicate well. She can’t keep eye contact. She’s delayed developmentally.

She doesn’t like loud noises, clothes, food, has balance difficulty. She has sensory processing disorder.

She’s afraid of the dark. She’s afraid of public toilets. She carries on frantically when she doesn’t like something. She gets too nervous about being wrong. It’s anxiety.

The problem is that all of these symptoms overlap in the Venn diagram from hell. They are each part of sensory processing, autism, adjustment disorders and anxiety. So each profession we talk to grabs hold of the symptoms they specialize in and diagnose and suggest treatment for that. Each have compelling arguments why they are right and how their diagnosis would cause the other symptoms and then each are left with a bunch of ??? when Molly doesn’t quite fit their mold. And we are left trying to figure out what to do next.

We’ve had success with therapeutic riding, but not in some main areas.

We had success with behavioral therapy, but as soon as Molly figured out the ropes it was downhill from there.

Sticker charts are useless. She can’t be motivated. Some days to do anything.

Since this summer, we have been heading into the anxiety difficulty. It’s the last piece of the puzzle we really haven’t tackled. We tried once. We did the big name hospital, we weren’t happy. Honestly, it scared me off. It’s a lot of time, energy and resources to go to these appointments. We’ve been blessed with plenty of family and friends who are more than willing to help, but it’s still tiring and at some point leads me to a nervous breakdown after balancing schedules, appointments, work and babysitters. After the first failure we’ve been putting it off, but a recommendation from the school psychologist has me staring at a list of names again. Plain old names. All backgrounds fit what we need, no one seemingly better or worse than another. It’s another shot in the dark to find out what we need and who we need. I sat and stared at these names this morning, trying to pick up the phone to call them and find out if they take our insurance and if they have availability that matches our limited free time, but I didn’t call anyone. Instead I sat and cried. Feeling like I needed a therapist myself, or a personal assistant to make the call so I don’t have to deal with it. I considered hooking my box of wine up to an IV but it was 9 AM and I had a feeling that social workers or counselors don’t appreciate drunk phone calls that early in the morning.

Then Molly came home from school and I realized that I do have to deal with it. I have to deal with it because I have a daughter that has difficulty dealing with life.

At least my boxed wine is still on sale at the local liquor store.

Sensory Processing Disorder (SPD) is a tricky diagnosis to have. For one, the medical community (the DSM) doesn’t recognize it as a stand alone diagnosis although many children have it without any other co-morbidities. It can also go with Autism Spectrum Disorder (ASD), ADHD, or other Learning Disabilities (LD) as a symptom of these disorders, and many times SPD’s behaviors can look just like behaviors for ASD, ADHD or LD. In our case right now we are playing the waiting game. Many of Molly’s behaviors could be plain SPD or depending on how she develops there is a possibility of ASD. Now the problem is when you have to wait you have time to observe. And if you observe with knowledge you notice EVERYTHING. It’s like going to webMD to research why you have a headache. In 10 minutes you think you have brain tumor. Same thing when observing your possibly autistic child. It’s even worse when you have a “normal” child. I find myself comparing their language skills constantly. Charlie who has only been talking for 3 months seems to have more functional language than Molly who has been talking for 3 years. But that’s not what gets me. It’s her parroting that alarms me. She repeats phrases, changes her tones and imitates her friends or TV characters. She has the same conversation with her imaginary friend over and over again in different situations and she says appropriate things at appropriate times that are always the same utterances. The other night she had an entire conversation with me about her Leapster quoting her Leapster. That’s when I realized- she’s not autistic, she’s ME!

My ability to carry on conversations made up entirely of TV or movie quotes is only inferior to one other person I know, my brother. For as long as I can remember the majority of mine and my brother’s conversations will include quoting and often the conversation will be entirely quotes. Barely ever do we make up our own jokes, we just parrot others. Somehow the movie Major League is appropriate to quote no matter subject you are talking about (Airplane! is also very quotable). ┬áThis skill also baffles my husband who half the time has no idea what we are talking about because the quotes can be out of context to anyone that hasn’t memorized entire movies. For some reason, that seems to only entice our quoting even more, just so we can laugh at with Stampy. (In all fairness, he’s probably laughing at with our idiocy). It’s not something we really thought about doing, it just comes out naturally, just like breathing or eating.

I guess you can say that quirky parents create quirky kids.

“Big Gulps huh? Alright, see ya later!”
big gulps