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.

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.

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.