Author Archives: Jamie @ SensationalFamily

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.

Smiles & Beer at 9 AM. Practicing the art of “leaving the children”

Funny thing, when I tell people that my husband and I are going away I usually get one of two responses. I either get a “good for you!” or a “WTF?”. Rarely is there a reaction in between. That being said, I think leaving the kids is a GOOD THING. In my mind I’m teaching them some great life lessons and hopefully setting them up for future successful relationships. That could also be the beer talking….

With that being said, I give you the  7 reasons I think leaving my kids behind is beneficial.

1. First and Foremost Stampy and I are husband and wife. I used to laugh at the baby advice books that urged me not to neglect my husband. Maybe that’s because it told me that I should simultaneously be nursing a child, changing a diaper and fixing him a sandwich. (ok, maybe not quite that bad, but one was very much pro-serve-your-husband) Down to the nitty gritty it has a good point. To be successful parents and teammates you need to get along. How do you get along? By doing things that you enjoy without someone throwing food on the ground, whining or punching their brother.

2. We are strengthening the grandparent/grandchild bond. Yes, they do see them all week long but there’s nothing wrong with a little extra special one on one time with the grandparents. Even kids need a break from their mundane boring parents that are always telling them to brush their teeth, put their shoes on or go to bed. That is a win-win-win situation.

3. This trip was to run a 10K. The kids have watched us (me, really) train and go running. I think teaching hard work, exercise and goal achievement is one much more effective by showing them instead of telling them. Molly is also learning the art of losing gracefully and perseverance, when she sees that I never win a race but continue to try. However, she never hides her disappointment when she hears that I didn’t win. “Maybe next time, Mom”

4. I get two days without reading food labels. Two. Whole. Days. That only means that my food label reading skills will be rested and ready to go when I get back instead of getting half way through the store and realizing everything in the cart has not been checked. Now, everything will be double and triple checked. Thank you rested, non-autopilot brain.

5. I learn to tone down my Type A, hyper-controlling personality. In order to leave your kids and want the grandparents to do it again, you can’t hound them for every time they give Oreo cookies for breakfast. After all, it’s really not my problem when the sugar high kicks in and at least the kids are eating while I’m gone!

6. I can exercise and drink all before 9 AM. That is two things before 9 AM. Two fun things. Usually those two things are drinking cold coffee and losing my mind trying to get the kids ready for school.

7. I realize I miss the bickering and whining. Crazy, right? But removing myself from it actually makes me miss it (really, the kids) which helps me on the days when no one will listen to a word I say, I just think back and remembered that I missed this. I missed the insanity and wanted to come home to it.

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I am an “Allergy Mom”

At a party recently Nutter Butters were served. I knew they were going to be there. As an “Allergy Mom” I had spoken to the party mom before hand and sat my kid at the table with my eyes wide open. The mom next to me started to panic when she heard me turn down the passed treat saying “no thank you, he’s allergic”. She asked me questions about if it was ok for her son to eat the treat next to mine, did I want them to move, why can’t her son take peanut butter to school, etc. The normal questions that I’m always happy to answer. 

I wasn’t prepared for our next meeting. At her own son’s party she came up to me and said “I told my friend about what happened at the other party and she was shocked that you let your son sit there and that you were actually nice about it!”

I think that was a compliment.

I wanted to face palm.

“Actually nice”. Like it’s surprising that a mom of a child with food allergies is nice. Not the impression that we, as a group, really want to hear. 

It made me think. Why do we get such a bad rap? Why do we need to stand tall and shout and demand? Why as a group can’t we work together to educate others and enjoy life? Why is this such a battle?

I started to think about other groups of moms. Thanks to social media and the internet we have grouped ourselves off pretty well. We are Breast feeders, stroller users, cloth diaperers, extended car seat safety moms, baby wearers, co sleepers, formula feeders, and home-schoolers to name a few. In each case we have labeled ourselves by a CHOICE that we made and gathered up with others like us to discuss our bond. There will be arguments between those that wear their babies and those that use a stroller. Crib sleepers and Co-sleepers are sure that the other one will be killing their child and let’s not even talk about the breast vs. bottle debate. But here’s the thing, those in your group mostly agree. You have a united front.

This is not the case with “Allergy Moms”.

None of us chose this label. In fact, nobody wanted this label. We got stuck with this label. We are in a group we don’t want to be in with moms who aren’t anything like us in our parenting styles. Here’s where the problem begins. We fight with each other. There are so many food allergies, symptoms and sensitivities it’s hard to lump us into one group. These people over here don’t care about the “may contain” statement while these families only use allergy free factories. This group is allergic by contact while this group by ingestion. This group has been to the emergency room while this group only has testing that says their allergic. My head is starting to swim just thinking about all the categories I could list. Everyone has a different comfort level based on their experience and their doctor. No two “Allergy Moms” are the same. Without a united front, we are still alone, fighting for our child. We want to advocate but honestly, sometimes I don’t know if I’ve made the right decision. Sometimes, I just hope for the best. It’s hard to worry ALL.THE.TIME. It’s daunting. 

I can understand why the non-allergic world is confused by us. We all want safety for our children but we don’t agree with what is the best method. And if those of us that live it everyday can’t agree, how are we ever going to educate everyone else? How are we ever going to get others to understand what is acceptable behavior and what is not? How can anyone understand any sort of protocol?

They can’t. And we can’t. 

So the next time you see one of us in high alert, instead of thinking “there they go again”, ask us. Ask us about our personal situation, our beliefs and our experiences that have led us to where we are today. That’s all we want, we want understanding and compassion for our situation. The one we didn’t chose. The one we live with every day.

What I don’t like to talk about

Monday afternoon the kids and I had a pretty good day and an even better bedtime. I wasn’t stressed when Stampy came home from work, in fact I was calmly making salad dressing for our lunches this week. It was a pretty good day. After our usual “how was your day?” conversation he said to me “did you hear about Robin Williams?”. I hadn’t, being in productive kid mode means little outside news enters my brain. 

“He died today. Committed suicide, it looks like”. It was 8:15 PM.

I had a moment that felt like I had been punched in the stomach. I stopped dicing cilantro and just stood there. At first I wasn’t sure why it hit me so hard. I never knew the man. I couldn’t tell you one personal detail of his life, other than I was pretty sure he had a drug problem at some point. I could tell you this. He was an actor that had been in a ton of movies that I loved growing up. He was a comedian that always made me laugh. He was a speaker I admired. Sometimes if I caught an interview I would think “he would be interesting to have dinner with”.

But it was more than that. It was that he lost a battle that many of us fight everyday, including myself. I don’t like to talk about my depression. I’m not ashamed of it, but it’s a topic that makes people uncomfortable. No one knows how to behave or respond when you pour your heart out. Depression has a stigma, it has controversy, it has a loneliness.  

I’d like to think I understand what Robin was thinking about on Monday morning, but I don’t. Even though I have sat on that ledge next to him, I know the despair of being alone surrounded by love ones. I know the hopelessness of feeling like you don’t matter. I know the sadness of self loathing. I know the feeling of being awake weeks at a time. I know how to hide my emotions in alcohol and food. I know the lies depression will tell you. I know. I have been on the ledge. 

I’m writing this for understanding. Over the past couple of days I have seen blog posts and Facebook posts both supporting depression and condemning it. As simple as some answers seem, “happiness” isn’t always a choice. Some days the heaviness is just there. I can’t force my brain to correct the imbalance, I’ve tried, it doesn’t work. It’s a disease, it’s a fight, it’s consuming, it’s hard. It’s also not a disease that has one answer. Some people find help in therapy, some with prescriptions, some with the Lord, some with family, and some with exercise. Unfortunately, some just can’t find what helps heal them and makes them feel whole.

So please understand that spewing out uneducated opinions on the topic of suicide and depression doesn’t solve the problem, it just widens the gap between you and the person trying to grasp your hand to help pull them out of the dark hole. 

The embarrassment of parenting

I got my first judgey comment on my Sensational Family Facebook account. I’m oddly proud, I guess I’ve made it?? It came after I reached 100 “likes” on the page. It was a big milestone weekend. The poster asked if I was trying to embarrass my children by posting about their somewhat quirky bathroom habits while away on vacation.

Long and short answer: NO. 

First, I’m pretty sure that kids aren’t embarrassed by their bathroom habits. They will announce to anyone in earshot that they have to poop, pee or that they just have done those things. They also see nothing of hanging all over you while you do the same. Ask any mother and I’m sure she’ll agree.

Second, I am never trying to embarrass my kids. And as kids, they don’t even know what “embarrassment” means. It is a learned feeling. A feeling of shame. A feeling of awkwardness. A feeling of humiliation. You can only feel these things by having someone else make you feel less, make you feel like your actions are less than standard, make you feel less. 

These are feelings my kids have never known.

I don’t hide their idiosyncrasies like they are bad. I allow my kids to flaunt them. They want to wear a tutu in public? Go for it! My son wants to wear princess shoes? Not a problem! We wear ear muffs in July. We take our own food to places that doesn’t allow outside food. We do it proudly.

Kids are wonderfully quirky. They don’t realize there are social “norms” or “standards” they should live up to. Of course we teach manners and being kind, those are standards no one should ignore. We embrace their quirkiness.

We have toileting issues in this house. I’m not going to lie, it can sometimes be emotional, sometimes funny and sometimes stressful. My 5 year old recently stood on an open public beach pulled her bathing suit over and peed into the ocean from the shore. In front of hundreds of strangers. If that didn’t embarrass her, I’m sure me saying she peed in her aunts yard was not embarrassing also. It was the facts. It was shedding humor on what can sometimes be stressful. We were lucky enough to have wonderful family that also embraced our quirkiness that not only didn’t bat an eyelash to it happening but encouraged it.

She was not shamed for her behaviors, she was loved and accepted for them. She knows no embarrassment.

I know in the upcoming years this will change. Their minds will be flooded from public views and friend’s opinions. I’m not looking forward to the day when they might feel ashamed of something that makes them wonderful, something that will keep them from being fulfilled, something that makes them happy. My only hope is that have a strong base to be proud of who they are and keep their heads held high. If not, they will always have family that loves them no matter what they wear, where they choose to pee or who they choose to be. 

Sensory Overload

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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.
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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.

Everything changes

This week was a big week here. Both kids are starting to show that they are growing up. Molly got on a school bus and rode to kindergarten camp and has her first loose tooth. Charlie decided he is now going to wear underwear. We are officially a house with “kids”. No more babies, no more toddlers, we have kids.

Part of me is super excited to embark on this next path. Full school days and no more diapers??? Could it be? We’ve reached the point where we have time to get something done and I don’t have to feel guilty as my child runs by with a diaper down to his knees. (Honestly, after five years of changing diapers, I’ve become lazy). We are on the road where I no longer feel like I’m herding cats into the pool and everyone is carrying a bag. I’m not going to lie, I LOVE IT. However, I see them growing and I want to cherish each and every moment now. I want to hold onto who they are and enjoy it because I know that soon it will be Charlie loosing teeth and Molly will be running off with friends at the pool, only coming back to me for ice cream money.

Wanting to enjoy this moment in time made me realize that I’ve had a parenting shift. Not that I wanted to rush through the babies years, but like almost every other parent, we are waiting for the next milestone. When a baby rolls, we wait for the crawl. Once they crawl, we are excited for them to walk. There’s always a next step. First baby food leads into first finger foods and self feeding. I spent 6 long months waiting for Charlie to sleep through the night. Each of these milestones are exciting and they happen fast. I thought I would never forget their stats at certain ages or the dates they crawled, walked, ate, slept, etc and now I can’t even remember (nor do I try) when these things happened. I just think, “eh, it happened”. We waited impatiently, then the milestone happened and before I could truly enjoy where we were, I was already thinking “what’s next?”.

I once had a yoga instructor tell the class that we can’t enjoy our present if we are too busy holding onto the past. I think the same goes for looking forward into the future. The past five years have taught me that the little people I put to bed tonight are not the same people that will wake up in their beds tomorrow. They will be a day older, a day smarter and a day more advanced. So instead of trying to remember each “milestone” or look forward to the next, I plan to take this moment and enjoy it because everything changes.

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.