Category Archives: Mollinator

Did you cry?

I sat talking with a patient about a year ago. Her 36 year old Down Syndrome son had just tried to sneak a soda and we were discussing the challenges our children faced as well as what we faced as parents.

“Did you cry when you found out?” She asked me. “I did. I bawled for days. I didn’t know what else to do.”

I felt bad telling her the truth because the truth is, I didn’t. I didn’t cry leaving the developmental pediatrician’s office that day. I left feeling relieved.

“Honestly, no.” I hung my head. “I felt relieved. I spent 5 years feeling like I was failing as a mom that I was so happy to hear that this wasn’t my fault.”

It still sounds self indulgent.

But the truth is, by the time she was diagnosed I had cried a lot.

I cried every time I couldn’t get her to eat as a newborn.

I cried when I knew her very rigid schedule was disrupted because I knew I would spend the next 48 hours with a baby that couldn’t cope.

I cried when her temper tantrums seemed to never end.

I cried when the next one started again 20 minutes after the last one stopped.

I cried when we couldn’t get her to eat.

I cried when she would bite me and pull my hair.

I cried when we exhausted one therapy and we still weren’t “normal”.

I cried when I made the appointment for yet more therapy or to meet another specialist.

I cried a lot.

And I still cry when she struggles.

But the truth is, the tears come from struggle, not a label. These days she is a happy kid. She’s starting to make friends and finding herself in hobbies. She excels in school and radiates with her accomplishments. Her diagnosis doesn’t upset me because it doesn’t define her and it allows us to deal with the tears constructively. And that is something to celebrate.

The more things change…

It’s 3PM on a Saturday, I just poured a glass of wine.

Stampy just took the kids to a farm to run around and give me some space.

It’s been a long week.

We had some difficulty at school at the beginning of the week. The good thing is, we have a teacher that took notice and wants to help. The bad thing is, it probably won’t matter.

I realize I’m pretty cynical, but we’ve been down this road before and the more things change, the more they stay the same. I have a hyperlexic kid who can’t communicate. I have a child riddled with anxiety. I have a brilliant child that can not figure out what to do unless told specifically “do this”. No matter the challenge or developments, these things remain the same. These are the roots of our problems. These cause no difficulty (yet) in school so help is often hard to come by.

Molly’s teacher told me I seemed unhappy at our conference. I’m not unhappy, I’m just lost. I don’t know how to help. We try and we try but we aren’t always successful and sometimes we are just out of ideas. I’m tired. I feel like Molly is often crying for help in her own ways and we can’t help her, sometimes when I try I feel like I’m crying for help and no one is listening.

I face the challenge that it’s hard to describe Molly. I had an “aha” moment today at therapy but it took three years of observation to get there. It came after Molly’s teacher informed me that she noticed Molly seemed lost in class one day. Molly was just standing at her station, not asking for help and not doing anything. I know that lost look. Then we went to an activity at her school. I told her she could go with her friends to the different stations but she just looked at me and looked scared. So off we went to the first station together. Then I saw it. It smacked me in the face. She couldn’t figure out how to decorate a cookie because no one gave her instructions. In fact, she couldn’t even figure out how to hold the plastic knife to spread the frosting. I realized then that she was the same three year old wondering around her preschool class without doing anything because no one told her what to do. Which made me realize why sometimes we have so much difficulty at home. I’m forcing independence on her and she doesn’t know what to do.

Then I felt sad. I felt awful it has taken me three years to catch on that she never developed out of that trait. I realized we’ve grown but we haven’t changed. I’m still as lost as I was three years ago when this battled started and she’s still the little girl that is lost.

Things have stayed the same.

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

PicsArt_1414587451390

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 Overload

PicsArt_1405297365820

I have a child that thinks an ice pack isn’t cold enough. You can put one right out of the freezer onto her skin and she barely bats an eye. She also acts like a slight bump into the wall has broken every bone in her body. The sound of the car while she is riding in it can be too loud and a crowded store can be enough to bring on the worst meltdown. The act of moving her feet in a reciprocal motion to pedal a bike is challenging and I have to convince her she is hungry or thirsty. Needless to say her wiring is a little askew. She has a sensory issue. Or an issue with her sensory issue. Either way, it’s something that needs to be addressed.

We do sensory play. We try to help stimulate her nervous system. We have a swing, we have bins, we have a brush. None of which is Pinterest worthy because none of it needs to be. I don’t do joint compressions on her for the family fun experience and we encourage showers for more reasons than cleanliness. Sensory play is part of our life. Sometimes, it’s what gets us through the day.

But something has become popular. It is overloading my Pinterest, Facebook, Instagram feed. It is #sensoryplay. With pictures of little kids playing in shaving cream or rice or sandpaper. It’s something else to make the average mom think “my kid is never going to college if I don’t give him sensory stimulation”. But I’m here to tell you to relax. You are fine. You don’t need to run out and buy a bunch of beans or balls or water tables. The reason is, that kids get sensory stimulation ALL.THE.TIME. They play in dirt, they roll on the carpet, they have play-doh, they get sunshine, they slide down slides, they paint, they climb furniture, they wear clothes, they get stimulated. These tools, while maybe fun for the day, are not a necessity for good parenting. No child will be lost if they never got to find tiny choke-able items in a bin of rice. I promise you.

How do I know? Because I have a sensory impaired child and a regular sensing child. The difference in their reactions to stimulation are night and day. The interest they carry in the activities are night and day. The amount that they tolerate are night and day. The same rice bin that soothes one, bores the other in 10 minutes. The only thing that they both love is the swing and really, who can blame them? I want to spend time in a hammock too!

So, do yourself a favor. When you think your child needs something to do, open the door and let them run. 

When therapy goes wrong

I would like to think I have good instincts. I read people well. I listen to instincts. Occasionally, I try to ignore these instincts. That’s never a good idea. I went into our last therapy session with the trained professionals ignoring my gut. I told Stampy on the way there that I believed this would a good thing, I wanted to go in with a positive attitude, I wanted the psychologist to surprise us, I wanted him to be someone he wasn’t. This is our story of an unsuccessful therapy venture.
sharememe0948123167

 

Going to therapy is a sacrifice. It takes work, it takes effort, it takes maneuvering schedules and having flexible child care for Charlie and flexible bosses that allow us to change our schedules quickly. Our latest bout was probably one of the stressful schedule maneuvers and commutes we’ve had to handle. The therapist was only there while we were at work, our appointments always seemed to be at meal times, we had a 45 minute commute one way. After three weeks, the schedule was noticeably wearing on both Stampy and I and my inner instincts were screaming “RUN AS FAST AS YOU CAN!”. 

We went into our third and final session hoping for the best. That this guy was going to have a plan that we could get on board with. What we were given was a sticker chart. You read that right. I said “sticker chart”. After 40 minutes of this guy explaining and over explaining everything we had learned in previous therapies, he had decided that he would send us home with a sticker chart for drinking water and going to the bathroom. 

*sigh*

I’m not against sticker charts, but I certainly didn’t need to drive 45 minutes to get one. Plus, this wasn’t our first rodeo. We’ve done sticker charts. We’ve done schedules. We’ve done rewards. We’ve done it all. That’s why we were there. We wanted the one thing that no other therapist could offer us, because we’ve tried the conventional. 

In the first visit, he did no interacting with Molly. Sure she was there but she played in the room while we talked. The second visit, he observed her interacting with us, under scripted circumstances. In which our child, who we say has temper tantrums and defiance problems, was a perfect compliant angel and he would ask “is this a typical behavior?”. I understand he wanted feedback, but I got the impression that he really didn’t know the answer to that. I wanted to be like “yup, aren’t the tantrums awful???” but I did my best to keep my sarcasm to myself. So, at the third visit I brought up again the fact that I would like further diagnostic testing for ASD and he seemed shocked saying what he saw didn’t indicate the need and the fact that the school psychologist didn’t recommend it. However, the school psychologist actually had in the report that she had strong suspicions of ASD and further evaluations would be needed as Molly aged. Obviously reading is not one of his strong points.

During the 45 minute drive home, we had a good laugh. When the laughing was over, we came up with a plan. Next up to meet with back with our social worker for a refresher and to call one of the local names that she gave us. This was my original instinct. I went against it to go to the hospital with the reputation. After all, on paper, it was the best option with the best resources. Today, I called the local name. She talked to me for 20 minutes and gave me a clear plan of what our next steps would be, will be giving us names of developmental pediatricians, explained why a diagnosis should be our first step before therapy and even though she doesn’t accept our insurance, she would be happy to offer advice where she could and direct us on this new path. I felt less stressed when I got off the phone with her. I should listen to my instincts more often.