Make It Monday: PT Edition

It's Monday. I made something. Make it Monday is back, Boy-eeeeee!!!!

So, yeah, we pretty much have the best PT office on the face of the planet. They're just MADE to do what they do. The whole place rocks. Need a reference? Let me know. I'll point you in their direction. Anyway, we've been on a "crash pad wait-list" for months. MONTHS. Which is fine. We're not the only family that needs a crash pad. And our turn came up! 

What's a crash pad? Oh, honey, a crash pad is God's perfect gift to sensory seeking kiddos. It's basically a giant pillowcase filled with foam chunks. Nothing fancy there. Just all kinds of foam chunks in all kinds of sizes. Their office has one that HAS to be 8'x5' big. Huge. The little one has to earn her crash-pad time because she loves it so much and would do nothing else for the whole half hour if we let her. All that beautiful sensory input crashing all over her little body. Mmmm-mmmmm good! 

Apparently our PT has connections with local furniture shops that send their leftover foam over to the PT office instead of trashing it. They called me this morning with the good news and the conversation went a little something like this:

"Hey, just wanted to let you know the foam is in for your crash pad. Are you still interested?"

YESSSSSSS!

"Can you pick it up today?"

YESSSSSSSSSSSS!

"Would you be coming by this morning?"

YESSSSSSSSSSSSSSSSSSSSS!

Want one of your very own? Well, here's what you need for your very own Crash Pad:

Foam (Cost- Free. Well, not FREE. PT ain't cheap, people, and we have just about a year under our belt. Ohhh.... THAT'S where all our vacation money went. -sigh-)

I can only tell you how we got the foam, all 5 trashbags full. I've seen the stuff at JoAnn's but never priced it before. Ideally you'd have chunks of all different densities and sizes. You're gonna be cutting up chunks of foam into smaller, more manageable chunks. Be sure they're all different sizes; no smaller than your hand, no bigger than your head. (if you're me you'll be chucking them into a big ol' box that a tub came home in....Long story). Lots of therapeutic ripping and cutting for you Mommies.

(Then you child might woke up and see the box-o-foam and be in heaven.)

Fabric (Cost- Free.)

I went into her linen stash and took out a flat sheet. See, she doesn't use flat sheets. I've tried to get her to use them but after tucking her in she'll sneak out of bed, rip the bed apart and then cries that she's not tucked in again. She sleeps on a fitted sheet and then a blanket on top. A thick one for cool nights, a thin one for warm nights.... So I have this pile-o-flats that I can use for whatever. Like Crash Pads. You could run out and buy a flat sheet. That can't cost more than $10, right?

You simply sew it up. I took the sheet and folded the top to the bottom and sewed two sides leaving one whole end open, like a pillowcase. Then stuff ALL THE FOAM into the "pillowcase". Be sure to mix up the sizes at this point. Little pieces, big pieces, squishy pieces, dense pieces. All mixed up. Shake it up. A lot. Get the foam in it however you can. 

Then sew. it. shut. 

You're gonna need a lot of space to place this giant mound of foam. Clear off the dining room table. The WHOLE table. Clear it off. 

I can also suggest that an extra pair of strong hands might have been worth the wait. Just someone holding it closed while you run the machine. Not required... just the peace of mind knowing you're not going to break a needle and send the sharp tip into a hunk of foam for your sweet child to impale themselves on........or something.

Then you just let them go buck-nutty. Because they will.

So there you go. Therapy tools can be as cheap as free instead of hundreds of dollars. Don't spend hundreds of dollars. Please. We'll make it together. Promise. Just bring over the supplies and a cup of coffee. 

To be heard.

Things don't roll off my daughter's back so well. When a hurt is tossed her way she grabs in with velcro gloves and holds it close to her chest, curling up into a fetal position, wrapped around the small ball of ugly... letting it weigh her down and refusing to let it go.

This past week in church the topic was Emotional Health and my husband and I gave each other a knowing look when Pastor said "Some of us have small emotions and some of us have big emotions" (paraphrased). Our daughter has big emotions....BIG emotions.

If that's her SPD or her personality, I don't know. All I know is that she needs to get a light coat of teflon if she's gonna get through this world in one piece. So we work on it. So very hard. We have social stories, role playing, games, you tube videos... you name it, we do it. (We got our own mini PT/OT office in our living room... dining room... school room....Ok let's be honest. HOUSE!)

Yesterday was gonna be a big one. Out the door at 8:30, home at 5 kinda day. No nap. Lots of activity. I was ready for it. I wanted to make sure she was. As we drove we had one of our many "Mommy Talks".

Me: "OK, babe. Now if you're having a rough time with someone what do you do?"

Her: "Talk to them first and then go get an adult to help if it doesn't work."

Me: "Good! Now what do you say?"

Her: " 'That's OK. I don't care.' and then walk away."

The floor fell out from under me. "It's OK."?! Why was it OK? It's OK for one's feelings to be hurt? It's OK for someone to say or do something mean to you personally and just walk away? This wasn't new advice. This was the advice I was given as a child. "Just walk away." but how many hurts from my own childhood am I still carrying with me today? Too many to count. No. For some reason I knew this was another one of those moments that would make or break the woman my little one was meant to be.

Me "NO. That's NOT what you say."

Her: -stunned silence-

Me: "No. Your feelings are important and matter. You should be able to share with someone when they hurt your feelings in a kind way: '_______, I want to be friends with you but when you do that it hurts my feelings. Can you please stop?' Let's practice it."

And we did. Once we were done and the script was in her brain she popped her thumb in her mouth and started tearing up.

Me: "Baby, what's wrong?"

Her: "You listened to me. You heard me."

Then I started tearing up. She just needed someone to hear her. To tell her her feelings matter. To help her express her feelings in a calm, safe way. That she was important. That her feelings were valid and deserved to be heard and accounted for.

We're still working on it but now we have a better starting point.

________________

The last few weeks I've been dealing with horrid migraines. They usually hit right before dinner time and have me going to bed as soon as the plates are cleared up leaving my husband and daughter to fend for themselves all evening long. I try everything. I drink tons of water throughout the day, make sure I wear my glasses all. the. time, getting massages from my husband (the kind that don't go anywhere), I've been eating better, organizing my life a little better, setting more boundaries so I don't get overwhelmed and making sure I get bible time in every day.

Nothing was working.

So last night, after my busy day, when I got hit with a doozy of a migraine I just laid in the dark of my bedroom and prayed. "God, please take this away. Take away the strobing pain, the nausea, the everything."

He said, "Why are you getting migraines all of a sudden?"

"I doesn't matter, just make them go away."

And in all His infinite fatherly wisdom He spoke "It DOES matter."

It was clear as day now. My migraines have been appearing every 2-3 days since I received an email One laced with guilt and accusations and passive aggression. I had grabbed onto a ball of pain, curled up around it and held it close to my chest, curling up into a fetal position, wrapped around the small ball of ugly... letting it weigh me down and refusing to let it go.

I was saying "That's OK. I don't care." and trying to walk away.

As only He can, He spoke gently to me using my own words that I spoke to my daughter only hours earlier "No. Your feelings are important and matter. You should be able to share with someone when they hurt your feelings in a kind way: '_______, I want to be friends with you but when you do that it hurts my feelings. Can you please stop?' Let's practice it."

And I wept. Because I needed someone to listen to me. To hear me. He did. The one who holds every atom on Earth together stopped everything to not only listen to me... but hear me.


__________

I sat down this morning to deal with the email. I wrote something kind but making sure my feelings were clear and would not be lost in translation. I'm hoping for a migraine free-day, we shall see... but at least I know I was heard. Maybe not by the recipient of the email but at least by the God of the universe.

Along with this sweet little five year old, 30-something me is learning my feelings matter. They are important and valid and deserved to be heard and accounted for.






And because I am the Queen of Quantifying (according to my husband):

-I am completely aware of when my child does a wrong. She is not some tragic victim in the world. She can be just as snarky and mean as the next kid. I know.

-I am not a PT or an OT... There are years of training and practice going into those fields of which I have none. Please don't think I claim to be one. I -heart- PTs and OTs!

-Some migraines need medical attention. This is not medical advice. I am not a doctor.... I may go see one soon if this new development doesn't make mine stop.

Garage Sale-ing (or Teaching Your Child How Not to go in Debt)

The trees are budding, the tulips blooming and dandelions are plentiful.... Spring has sprung in our corner of the world! People are cleaning out their homes and it's Garage Sale season!

This morning I took my little girl to her first real neighborhood Garage Sale, not as a spectator but as a shopper! To make math real I doled out five one dollar bills. We talked about how each dollar was equal to four quarters OR 10 dimes OR 20 nickels. Honestly, I had no idea that $5 would buy so much! (Or that so many senior citizens would just give things to her for being so cute with her little purse. So much for the math lesson.)

She got one of every garage sale category; stuffed animal- check,  books- check, craft kits- check, outdoor toys- check, ziplock bag filled with odds and ends from a bigger, more elaborate play set- check...... she was having. a. ball!

Her last and most expensive purchase, for a whole dollar, was a Polly Pocket car that was obviously broken. Even though I pointed that out to her she insisted that she wanted it more than anything in the world and paid with her very last dollar. Within 5 minutes she looked at me and sobbed "It's not a great toy. It doesn't work at all." tears starting down her face.

I felt for her. I truly did. How many times have I bought something and was immediately hit with buyer's remorse. From little things like the fruity gum at the checkout that went waxy once the flavor ran out or a shirt on clearance that seemed OK but looks kinda meh now I have it at home... To big purchases like the SLR camera I bought under pressure when that electronics store went out of business at the mall that really isn't user friendly and now, two years later, I could have bought a Canon or Nikon for the same price... or my very first car that I bought on my very own: A '92 Chevy Lumina that was a BOAT but burst into flame less than 2 months into ownership. (After spending the same amount of money I paid for it to fix the alternator, starter and head gasket.)

But what did I want to teach her in this lesson in money and choices and frugality? I mean, I had a few dollar bills in my pocket. I could have just handed one over to her and it wouldn't have made a dent in my shopping plans. If I really wanted to I could have walked back to that house and told the seller that they sold a bum toy to a little girl and, I don't know, gotten her dollar back or exchanged it for another toy.( I mean, what kind of person sells a BROKEN toy at a garage sale?!?!? Ok, breathe in- breathe out. I'm OK. I'm OK...)  Either way the tears would stop and I could go on with the happy morning.

For some reason this seemed like a big lesson to her broken heart. (One I wish I had learned waaaaay before I bought that Lumina.)

I sat on some random person's front lawn with her little head on my shoulder and broken toy in her lap. She wailed for a bit and I just held her in her broken moment as people walked by and stared at the sweaty woman with the weeping child on her lap. The sweaty woman whose shirt exclaimed "Stay At Home ROCKSTAR".... I was not feeling like a Rockstar at the moment. I wanted to crawl up into a ball and die.

Once her breaths evened out I smoothed back the hairs plastered with sweat to her forehead. I explained that she made a bad purchase. How I gave her advice on what to do and she made her own choice and sometimes they come with their own consequences. That we need to not buy what our heart wants in the moment but to "stop, think and cho-o-oose". (Credit: Daniel Tiger)

"Momma, I should have listened to you."

"Yeah, I know you feel that way."

"I was foolish."

"It's OK. It happens. To everyone, even grownups."

"Mom, I'm never going to make a bad purchase again. I'm gonna stop, think and cho-o-oose next time."

Can I have that in writing?

We continued shopping, finding the motherlode of scholastic books. I went SHOPPING for our home library! At that same sale they had TONS of little girl toys, priced to sell. Little girl looked them over, played with a few and remarked to me as we left that house. "Momma, I ran out of money. I couldn't buy anything there, my heart wanted stuff but I knew I had no more money."

"Was it hard?"

"A little bit."

"I'm proud of you for making good choices."

.... and we literally skipped back to the car.







All this started as a Facebook Post but the story went on and on and on. I don't know what led me to share this slice of our day. But there it is. A moment of our real.

A moment of perspiration, tear, and snot soaked ugly turned into a learning moment for my little one. Reminded that if we can pray in the moment for the strength to stay cool we can turn it around. We can get back to that happy moment we had just left and all be a little better for it.

Oversharing

So my last post got some traffic. Lots of traffic. My most viewed post ever. By, like, a lot.

A lot, a lot.

Almost twice as many views as my previously highest viewed post.

That leads me to believe one (or a combination) of the following:

1- Some of you shared that post with a friend who has been struggling with their own child's.... stuff. Or someone shared this blog with you.

2- You've been around my child and after reading it the first time you had a flashback to a recent event and thought "Is that why that... Oh, yep. That's why that happened. It's on that list-y thing-y she posted. Glad I checked it.... again."

                 a.) She's a good friend and mom.  I'm happy to walk alongside her as she
                    figures this thing out with the help of professionals.

                 b.) She's using this made up diagnosis to justify her own bad parenting.

                 c.) She's a nutter.


3- You're going through the list yourself and thinking "Hmmmm. Is that why my kid does that thing? Maybe I should talk to his teacher/his doctor/a friend about this."

4- You've called CPS and need good hard data to record one of my many negligent abuses.

5- You ARE CPS and need good hard data to record one of my many negligent abuses.


So I feel I should address these theories I have about these possible reasons for the explosion. (That and I had Starbucks after 7:30 and I can't sleep.)

1- Hi! If you're new, nice to meet you! I'm new at this whole thingie and have no idea what I'm doing but I'm happy to share what I do (and ultimately what I don't) know about SPD. Especially our family's own special brand of SPD. I won't just post about that but it's a big part of my life right now. For the first time both us parents are on the same page and it's an exciting time for us; to finally understand our daughter how she's wired and how to help her navigate life.... together. As a team.

If you're not new, thanks for holding in there.... and visiting. A lot. I've gotten lots of love from you and am thankful for all the warm fuzzies. That being said, I cannot share all the comments (or any of the comments from the previous post) on the blog because her name was used in them. Right now I'm not publishing her name on this open blog so that 1) I can leave this blog open for Moms who many not know me personally. 2) She can know if a prospective school or employer Googles her name (if they still do that in the future) it will not link back to this dorky blog her mom did. If you post a comment I will see it, be thankful for you and your friendship... but not publish it if it has her name.  (I'm thinking I need to be like one of those cool blogger Mamas that gives her kid a nickname. I'll put that on the list of things I need to do. Yep, number 2,731.)


2- Yep, that's why she melted down at that playdate. It was just too much stuff for her to handle. Hopefully we'll have a better time next time. Whatever happened, we're working on it. Trust me.

                       a.) I love you more than you know. I keep your posts and comments
                            in a little pocket of my heart to be taken out and looked over again
                            and again. It keeps me sane to know that I have friends who don't
                            think I am insane.

                      b.) I WISH my bad parenting caused this, because all I would need is a
                           visit from Super Nanny and my life would be "normal". But it's not.
                           It's real and if you want  to see the therapy in action and the results
                           we get when we have PT (or don't have PT) you're welcome to
                           come over any time.... because we're working on it ALL. THE.
                           TIME. Seriously, it took her 3 weeks to get her feet into a bin full
                           of lentils without reacting like a contestant on Fear Factor. Tell me
                           how my parenting could have caused that.

                        c.) I wish you all the best in life. Goodbye.

3- I am always ready to talk. (Really. Have you met me?) Always. If you have that nagging feeling in your gut that  this is something your child is dealing with and you don't know what to do next let me know. We'll get Starbucks and stay up waaaay to late talking about it. I'll help you in any way I can, I promise.

4- If you want the good stuff come over riiiiight before nap time. When she's good and stimmed out from a busy morning and is too tired to know what her body needs next. Yeah. That's the good stuff.

5- Ilovemychild. I'magoodmother. Pleasedon'ttakeheraway.



All that being said, I'm kinda having a bit of anxiety that I put this out there.

I'd watch the numbers go up every time I checked the computer and I'd think about what I wrote and I'd be all..





I mean, my most viewed post currently is how wacked out I think my child is. Great parenting, Jess. Good job.

I had told someone that knew early on about her SPD about my post and she said "I didn't think you wanted people to know." Which was true. I had specifically told her not to tell specific people anything about any of this. I wanted to keep this kinda close to my chest. Sharing it with those I thought needed to know and that's all.

Sunday School Teacher- Yeah, she should know.
Friends that we have playdates with- Yeah, them too.
That judgy family member who will be sure to send me countless emails about how I'm wrong.- Nope.
That one friend of a friend that I met at that one baby shower 4 years ago.... Nah, she doesn't need to know.

But why? Why did I want to keep that to myself?

The truth is I was embarrassed. For goodness sakes we only have one and we broke it, twice.

I was angry. He's only giving us one. (He's made that clear as day.) We couldn't have a "good" one? We had to have a "hard" one? Really?

I didn't want other people's judgement on me. Everyone is clearly better at this than I, or at least they're gonna think it.

I didn't want other people's judgement on her. You know, the weird girl. That has the thing. The thing where she's unstable and hard to be around. Let's not invite her over because she's just too much. Why don't you invite that sweet little girl that sits quietly when she's supposed to with the headband on her head where it's supposed to be.... not across her forehead.

But ultimately I didn't want it to be her identity. I didn't want people to see right past all the good stuff and just see the rough patches. Because there's a lot of good stuff and I don't want anyone to miss it while we're all waiting for her to have a sensory fueled meltdown:

She's hysterically funny, deeply compassionate, insanely smart. She's fearless and daring.

She's convinced it's her job to exercise our 12+ year old cat by sitting 3 feet away from her and gesturing for the cat to sit next to her, only to get up and move another 3 feet away so the cat "can live a longer and more healthy life".

She's eager to learn every day (maybe not for the length of time I hope for but at least once every day).

She vacuums, feeds the kitties, makes her bed, and sets the table for dinner as a matter of course, because it's how she helps the family.

She's always singing or humming something around the house, filling it with her own special music.

She wakes up chattering away, narrating her life as she does her morning chores. Usually reminding herself to be quiet mid-sentence because "someone might be sleeping".

She constantly prompts herself (and others) using the little songs from "Daniel Tiger's Neighborhood".

She loves people that will talk to her like a person, usually over sharing one of our many hospital stays or doctor visits... only to catch herself and say something to the effect of "How are YOU doing today?"

But most importantly she loves Jesus and prays more than any adult I know, soaking up whatever scripture we read to her like a sponge. (Seriously, I'll be looking back in the car at her with her head down and hands folded and ask her "Wat'cha doin'?" and she'll say "Talking to God. Hold on, Mom. I gotta finish my conversation.")

_________________________________

So do I regret "over sharing"? No.

I regret if I've painted her in a way that may lead someone to believe she is a uncontrollable brat that has regular tantrums for not getting what she wants when she wants it. (Both in writing and in person. I know I just caught myself doing it again tonight when I jokingly apologized to someone that had been in one of our many failed attempts at finding a "fit" if my daughter had beat up their child. Seriously, why do that? If I make such an effort to never speak that way about my husband in public then why do I not extend the same courtesy to my child? If you know me in real life you are free to slap me if I ever do that within your hearing again.)

I regret not standing up for her sooner and allowing what I think people think of her affect how I parent.

I regret not snuggling her more and being her safe place in the past when she just couldn't be herself at that moment.

I regret not pushing for the help I knew she needed from deep in my gut sooner.

I regret.... gosh I could go on forever!

We all could.

But over sharing? No, I think I shared just enough. And I'll let that be that for a while.

Our lives are sensational!

No, really. Sensational. And have been for the last 2 1/2 years.

I knew something was up. My mommy senses were tingling. We spent so much time NOT doing things. We tried so many things that just didn't "fit" our daughter.

Our first Epic failure was reading time at the Library. She was a good book reader at home so why not at the Library? A little book, a little craft, a few friends. This seemed right up her alley! Nope. After ripping apart the felt board to lick all the pieces, standing directly in front of the book the entire time so she could see, and throwing the craft across the room because the black marker was out of ink (as most kid accessible markers are) we left. In tears. I was waiting for CPS to come to my door those following days.

I've pulled my daughter out of gymnastics, kindersports, mommy and me gym and swim classes. We had a season where playgrounds were off limits because she just couldn't keep her hands to herself.

She's been kicked out of nurseryS. After I got our second "she's a bit aggressive for the room" from our second MOPS group at our second church I vowed never to go back to MOPS again. (I'm now on steering of my own church's MOPS group so that tells you how that worked out.)

So nothing fit. But why? She's smart, funny, kind and considerate little girl. Until she's not.

Not only did nothing fit activity-wise but nothing fit clothes-wise either. Tags were too much. The seams of the socks had to be just right. Beautiful dresses sent from out of town relatives were too itchy and scratchy. We lived in knit fabrics. Long tunic tops and stretchy pants.... jeans only if they had elastic waist.

Developmentally she was hitting every milestone on time and even several of them ahead of time. She loved being read to, she could strike up a conversation with anyone about anything, her basic math skills were growing as expected and she could spit facts about octopi and volcanoes and sharks and trains right back to you at 100 miles per hour.

We chalked it up to "She's just so smart. An only child. We treat her like an adult, she acts like an adult so why should we expect her to be a kid around kids?!" I mean, we disciplined her more than anyone else we knew disciplined their child. (For goodness sakes at her 3rd birthday party she spent most of the party in time out!) We read "Shepherding a Child's Heart", "Bringing up Girls" AND "Bringing up Boys" and spent time in several parenting seminars including the Nurtured Heart approach. We did everything we could to "beat it out of her" (CPS- that's a joke. Ha-ha..... get it? Pleasedon'ttakemychildaway!) and "hug it out of her".

But honestly, we had other medical issues to worry about. She had a kidney that was non-functional, ureters that were not placed where they needed to be and her bladder needed to be re-constructed. That was the year she was 4. The whole year it seems.

Until the beginning of fall. When it was apparent she wasn't going to grow out of toe walking. So we called her pediatrician who referred us to a pediatric orthopedic surgeon who referred us to physical therapy (to stretch her calf muscles because they were too tight).

Within 5 minutes her PT was telling me things about my child that I had never shared with her or anyone else. Random little silly things. Things that she would only know if there was a diagnosis for my child and other children like her. Sensory Processing Disorder*.

So she's not a bad kid, not disobedient, not "not listening", not aggressive, not mean, not a jerk, not stupid, not rough, not a picky eater, not destructive, not clumsy, not forgetful, not a drama queen. She has SPD. Her brain can't process the input that her body is receiving. Which is frustrating and painful for her.... and us.

The good news is that I was right. The bad news is that I was right.

This means our life is different. We won't be able to attend every birthday party let alone let her have one of her own right now. We can't do gymnastics right now. Or dance. Or Awana.... right now. Playdates are... progressing, but definitely not our strong suit. But we do it, and are thankful for those friends that allow our stuff into their homes and have learned to walk away from those that can't accept our life where it is now.

She's happy. We have fun as a family, being close and doing fun things. We're thankful that her SPD allows her full night sleeps, to go out in public with us, and to eat balanced meals. She has a grandmother who adores her and pretty much thinks she's perfect. Our daughter gets to spend one night a weekend at her house and I get to have a drink a break. We are blessed, please don't think I don't see that.

Right now I ask for grace. Not just for us, for any child that looks completely normal from the outside but inside has their own bundle to deal with. Give their Mommies and Daddies eye contact and a smile. Reach out to them. Let them know it's OK. Because the meltdown you see out in the world may be the tail end of the biggest success of the week.

For the too big child in the grocery cart. Because the cart may be the only safe space in the expanse and  noise and business of Wegman's

For the child that hugged yours a little too hard. Because they LIKE being hugged that hard so why wouldn't yours?

For the child complaining of sore feet when they've sat on their bum all day long. Because pain for them registers differently than pain for you.

For the child not listening to the teacher. Because they can smell the ammonia cleaner in the air, the sound of the other kids talking, the flicker of fluorescent lights, the noise from the hall as parents drop their kids off, the scrape of the tag on the back of their neck, someone's thick flowery perfume, the cars driving by the window sending a strobe-like glare across the room, the clock ticking and then the teacher being too loud  and too close in her personal space.

For the child that just can't.




*Right now we're in the process of getting her evaluated. This is a looooong process and quite a waiting list. Once it's done and diagnosed a whole world of services and groups and opportunities will open up.We'll get there, I know. In the meantime we have PT services as long as we want them. And boy, I want them.