Tag Archives: Therapy

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.

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.

Teacher Susie

When Molly was 9 months I expressed some concern to our pediatrician that she didn’t respond to us when we talked to her. She seemed lost in her own world a lot. He asked if she responded to sounds, I said yes, he said he wasn’t concerned.

When Molly was 18 months I expressed concern that she seemed to be bothered by things such as her hair being too long, her sleeves being pushed up or wearing clothes. The pediatrician said she was starting to express her individuality.

When Molly was 2 1/2 and again at 3 I expressed concern that she was having a lot of behavioral issues, more than I deemed “normal”. I was told by our pediatrician that she was bored and not to worry, she wasn’t autistic.

We are no longer with this group of pediatricians.

In the fall that Molly started 2 year old preschool I was at my wits end. She was almost 2 1/2 and having tantrums at every little event. I read parenting books, articles and blogs. I read anything I could get my hands on and talked to other parents for advice, but nothing worked. I was failing as a parent, I was failing my child and I felt like I was failing my family. Depression doesn’t even begin to describe how I felt.

“Give you child choices, so they feel empowered” I would read. I would give Molly choices and she would pick something else, like ice cream for breakfast and then throw a 30 minute fit because I wouldn’t give it to her.

“Ignore the tantrum, it will go away”. After 45 minutes it gets easier to ignore because you start to become numb to the the screaming, but after about the 4th one in a day your nerves are shot and you end up giving them some attention during the tantrum. Now, I have failed, she has broken me.

“Don’t overuse negatives like No, Don’t, Stop, etc”. Even though we still try to do this, I can only say “we sit on the couch” so many times before I go insane.

Enter Teacher Susie.

Teacher Susie came to us through the Parents As Teachers Program in our local school district. (I highly recommend this program if it’s available in your school district). She would come week after week with her tote of fun stuff and play with the kids. I would discuss our behavioral issues and she would supply real life solutions, then she would see them fail and say “hmmm, we’ll find an answer”.

Oh, how our family loved her totes though. The kids would be diving into them before she even took her shoes off and for an hour everyone was happy. There were new toys, challenging toys, sensory toys, fun crafts, those totes were awesome. Then there were Teacher Susie’s folders and in those folders were my goodies. There was information on development, on behavior, and new solutions to our problems. Finally, our concerns were falling on open ears. Teacher Susie worked with us for almost a year and then came the day that she witnessed Molly in full Molly form and me on the verge of a nervous breakdown and it was finally said “I think you need professional help”.

I blinked away tears and said “yes, that’s why you are here”

Teacher Susie: “I think it’s time our behavioral counselor came to talk to you. I can only do so much and you guys need the help”

I honestly just sat there and cried. I left to go back to work and cried some more. I felt like I had been punched in the stomach but I knew she was right.

A week later Marie showed up. I had taken notes over the weekend (Molly made it quite easy) so I could have everything I wanted to say easily at my finger tips. Then she had Stampy and I fill out a questionnaire about Molly’s behavior. Apparently we filled it out pretty quickly and without much discussion with is rare.

When Marie returned with our results, she had met with Teacher Susie first who informed her that we would be relieved. Marie still showed up with a look on her face like she was going to tell us that someone died. “Normal” is considered a child’s age + or – 2 years, Molly came up with a behavioral and emotional development less than an 18 month old, she was 3 1/2. Not only that but scored in the 99th percentile and off the charts for most categories.

We weren’t insane and we weren’t failures, we had a child that had difficulties and now to start therapy and find out why.

A year later we have lots of answers and lots of smiles and little mental breakdowns and we have Teacher Susie to thank for that. Without her, I don’t know where we’d stand today. She has since left the Parents as Teachers Program and often I want to email her or send her a card but how do you thank someone that gave you so much. How do you thank someone that finally listened and stood with you and helped? No card or email or gift seems to do justice what she did for us. I don’t know if there is ever a way to truly have her understand our gratitude. Teacher Susie gave us our family and she gave us our little girl back and for that I am eternally grateful.

Therapy Thursday

Therapy Thursday is by far my favorite day. I get an hour of therapy. Plus, she helped us with the whole dozen-temper-tantrums-a-day thing. That was good too.

But seriously, I don’t know why more parents don’t go to therapy. It’s awesome. Or maybe our social worker/family therapist is awesome, but whatever the reason it has been what our family needed.

Then the worst and best thing happened today. We realized that we probably don’t need therapy anymore. We sat around talking about the past month (scheduling had kept us from meeting before this point) and realized that we had nothing to report other than good things.

  • Molly has started saying “I love you”
  • Molly has become more verbal about telling us when she’s uncomfortable
  • Molly has transitioned back to school without difficulty
  • Molly has started to play with other children
  • Molly is getting her face wet without screaming

The list could go on and on and we realized we are only left with one basic problem: dealing with Molly in places that make her uncomfortable with her sensory system. Molly’s biggest sensory hurdle are noisy areas. That seems to be the last thing that still causes her behavior changing, life stopping anxiety. Luckily our therapist has just come back from a conference learning about dealing with anxiety in children. She warns us that therapy is still in the research stage, but I’m okay with being a guinea pig if it gets results. At least this lands us another session!

I’m scared to leave therapy. We have come so far with our hand held, I feel letting go is like jumping into the deep end without my swimmies. I know we can do it (I’m pretty sure I know how to swim), but I’m terrified. Our therapist has done so much for us over the past year. She is the one that took notice and said we weren’t crazy when we said that Molly wasn’t developing normally. She was the one that got us into Early Intervention. She was the one that kept me from ending up in a full straight jacket. She’s the one that taught us how to be a functioning family. I’m really not ready to go at this on my own. No matter how good things are.

What if I forget what I’ve learned?

What if Molly has a backslide when she starts kindergarten?

What if I just need an occasional pat on the back?

Last October when we started, Molly had the emotional development of an 18 month old. She was 3 1/2. That doesn’t mix well. Today in discussing how Molly seems to still lack empathy we found out it was normal. Normal? Molly?? Those words don’t go together.

But, they were said together.

And it felt kind of good.

Maybe I can do this.

Therapy Thursday: The Whistle Game

I’m squeaking in on Thursday after a long day of dental work. Thanks to a Percocet and a pain free induced state, I napped for 2 hours today… now I’m wide awake at 11pm. This won’t make for a happy Friday. I will take it since for the first time in 9 days my tooth hasn’t been in excruciating pain.

Anyways… Therapy Thursday. We have been lucky enough to get Molly into both behavioral and occupational therapy for her Sensory problems. I can’t even thank the woman who got this ball rolling enough. She was our lifesaver. These therapy sessions have given us a lot of knowledge and activities to try and experiment with so today I thought I would share one of our favorite OT games. (Disclaimer: I invented this game, not our pediatric OT. It was invented by my orthopedic PTA brain once we were told to work on weight bearing through large joints). The kids call it The Whistle Game. Basically it’s this: I use a Tabata Timer app on my phone and force the kids to exercise. 20 seconds on, 10 seconds off for 4 minutes, come on kids… burn those calories! We pretend we are animals for 20 seconds at a time. This also helps for turn taking and quick thinking. At each whistle one of the kids picks an animal and everyone acts like it until the whistle blows again, then the next kid picks an animal. This is really good for weight bearing through the extremities as they crawl and slither around the floor and it gives Molly the proper input and help her calm down and keep her from full body slamming Charlie. I strongly recommend playing this game before making dinner. This helps change things up as the kids are getting bored and need something to do and it also helps give them the attention they crave before you need to disappear. It’s amazing how much can get accomplished if you give the kids your undivided attention. This game only backfires when someone chooses “horsey” and then everyone wants a horsey ride. Then you are the only one working on all 4s. What’s great is that this game allows for a lot of variety, not feeling animals today?? That’s ok, we sometimes do actual exercises: jumping jacks, squats, push ups. or running laps. You can really do any activity you want for this, the possibilities are endless.

There are a ton of free tabata apps on the phone, I use the HIIT¬†app for Android. It’s Free and it’s easy enough to use that Molly has figured out how to use it so they can do it while I cook.