Tag Archives: Sensory Processing Disorder

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.

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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.

Starting Again

Today we started over again. 

We have been on and off the therapy bus several times. We’ve been through testing several times. I don’t know why I thought today would be different. Maybe it was because we were going to the big name institute that has credentials and multitude of services and reputation. Or maybe it was just because I’m in need of answers as we travel down this road again.

I didn’t get them today.

What we got was the same thing that therapy always starts out with. An interview. Questionnaires. History. Imagine telling a perfect stranger all of the worst possible character traits of you and your child, retelling your struggles and remaining neutral about them as if you were giving a list of what you had to eat that day, going over and over your child’s issues, and your less than perfect parenting moments. Now, imagine doing it for the third time. 

It’s hard to do. It’s exhausting. For some reason, I hadn’t planned to do it today. I don’t know why. Maybe I should have asked what the appointment would entail when I set up the evaluation. Maybe I should have looked more into what we were getting involved with. I was am so desperate for answers that I wanted one today. I wanted for us to go in and say “our problems are….” and have them ask a few questions and BAM! treatment plan, diagnosis, something. I wanted information. I wanted hope. What I have is two more appointments. Our observation appointment, which is basically what it sounds like, they observe you interacting with your child (not at all awkward or unnatural) then the “parents only” appointment where they tell you all the disturbing things about your child and how they plan to fix them. 

Two weeks. Two weeks until I need to mentally and emotionally prepare. 

I’ll need to get another box of wine. 

 

We made a decision

For almost two years now I’ve had a little noise in the back of my head saying “Kennedy Krieger”. I usually hush it up and go back into my denial world. I’m usually up front and open about “we need help” and “things aren’t right”, but somehow making the phone call to the children’s hospital seems extreme. It means we’ve hit the big time. I’m not totally ready for the big time.

Almost two years ago when we started with behavioral therapy, we were warned at that point we might not get all we need through local services. We weren’t promised cures, just a good ole fashion try. We were willing to go the least intensive route. Local behavioral therapy, local occupational therapy. And why not, even the school psychologist couldn’t give us 100% diagnosis. Everyone hovered over autism, PDD, anxiety disorder but were in agreement that something was off and most likely Molly was not a case of pure Sensory Processing Disorder. But, then again, she could be. We had a 3 1/2 year old and 18 month old. Least intensive seemed to be what would suit our family best.

We aced behavioral therapy and felt we could breathe. We plateaued in progress in occupational therapy. We started therapeutic riding. We couldn’t deny her improvements. There were many. She was becoming more social with peers. She was wiling to get on her bike. She occasionally would eat something other than pasta. She started using the bathroom at school. Occasionally. We also couldn’t deny the massive behavior problems that continued. The unwillingness to break from routine. The violent, and I mean violent, tantrums. The unwillingness and inability to be independent. The denial of what her body was telling her.

For those of you who don’t really know what Sensory Processing is (and I realize I’ve never really explained it here), it’s a incorrectly wired nervous system. Problems arise in hearing, smelling, tasting, feeling, seeing, balance and internal regulation. The Sensory Spectrum has a great picture, and article explaining SPD here. With Molly, we deal with noises, with balance (proprioception) and internal regulation mostly. And although it seems small, the anxiety and need for perfect routine are enough to drive you crazy. Then we deal with the fact that she doesn’t know she’s hungry, thirsty, hot, cold or any other body sense you could think of. Ever tried to get a picky eater to eat that doesn’t think they are hungry??? It’s impossible. We eat noodles every day. She becomes “hangry” quite often.

So here we stand. We are two months out of going to kindergarten and six months into some of the worst behavior problems we have seen in a long time. Each time we get through one batch another creeps up and we have more defiance, more stubbornness and more battles over every. little. thing. 

Our social worker thought we needed to go to the big guns. We were past what she could give us. We had done everything on their treatment scales. What we need is not here in town. It’s time to call Kennedy Krieger. However, knowing that I am in denial, she also gave us a few names of in town people that might be able to help. Might. I am tired. I am tired of going from therapist to therapist. I am tired of resolving and living through melt down after melt down. I’m losing patience. Fast. It took a week of deliberation between Stampy and myself but we agree. We need it. Our family needs it. Our daughter needs it.

I make the call tomorrow.

Wish me luck.

 

Imperfectly Perfect

“Every mom wants their child to be perfect.”

Those words felt like a punch to my gut. Anymore these days, it doesn’t take much for people’s comments about parenting (or how I choose to parent) to really get me riled up. I am who I am and I make the best choices I can make in the situation I have to make them. For some reason, this statement made me think. 

I don’t have perfect kids.

I don’t want perfect kids.

I am the mother to one child who had to have his urethra reconstructed (he was born not perfect) and now has a malfunctioning immune system. I have another child who has a malfunctioning nervous system and digestive tract. I know a lot about imperfection. 

It’s those imperfections that make us a perfect family. 

We cry together, we flip out together, we laugh together. We all avoid overly loud places that Molly can’t tolerate and restaurants that will easily send Charlie to the hospital. Molly teaches people how to use an epipen and Charlie hugs Molly and tells her everything is OK when she can’t quite get it together. My kids learn compassion and fairness. They learn that everyone has a bad day and that sometimes you have to wait your turn.

More importantly, it’s those little non-perfections that make those kids MY KIDS. It’s what makes them unique. It makes memories and multiple hospital issued baby blankets. It gives us great little personalities. It gives us little fighters.

It is what makes our family imperfectly perfect. 

A letter from a picky eater to a picky eater

My Dearest Daughter, 

You might not know this about your mother, but I was once a picky eater. I once ate spaghetti without sauce, only ate chicken nuggets at restaurants, and would not let a green vegetable pass by my lips. I gagged at all seafood (still do) and I thought chilli was the worst food ever. There were many foods I thought were awful without even trying. Brussell sprouts and mushrooms were on that list. I hated the smell of green peppers cooking and I didn’t eat mayo until… well, I still don’t eat that. I was lied to about ingredients in dishes and your Noni told me that she put chicken in the tuna noodle casserole. I didn’t fall for it. I still don’t eat beans, but that’s probably for the best. I had a brother that ate everything, I hated being compared to him.

It wasn’t until college that I ventured into the food world. When I did, I couldn’t believe that I had missed out on wheat bread for so long. I don’t know if it was the fact that I had roommates that ate different foods, or the fact that I wanted to fit in, or that I was older or that I was exposed to new foods, but I learned that the worst that could happen is that I wouldn’t like it and then I didn’t have to eat it again. Since then I’ve discovered fresh vegetables, pesto, chorizo, and NUTELLA! I was too scared to eat nutella. That was just insane. It will be another several years before I actually develop a healthy relationship with food and the girl that is still made fun of for asking “how do I boil water?”, is now the woman baking your bread, roasting your chicken, braising beef short ribs, making soup from scratch and growing vegetables. 

My point is, I understand. I empathize. I know your anxiety of new foods and your reluctance to eat. I get it. And after twenty years of stressful meal times I don’t plan on starting that up again. Some people will make fun of you, some will call me a bad mom, and some just won’t understand how you couldn’t possibly love shrimp. That’s ok. You’ll come around in your own time. Until then I’m going to put a green bean or a piece of beef on your plate because I won’t know if today is the day you will change your mind. I will do my best to serve you nutritious food that include foods that you will eat and occasionally I will ask you to try something new. I might even forget sometimes and press the issue. I’m your mom, I’m allowed to make mistakes if I feel it’s for your own good.

Love, 
Mom

P.S. Your father was a picky eater too, I think he turned out alright too.