Sleepovers and Spray Grounds

Last night was my little one’s first sleepover while exciting it didn’t come without its own set of worries. Overload, how to handle any meltdowns, things that any parent worries about, but does their best to make it through for their child’s sake. I am happy to report other than a few head butting times because everything should be just so to a certain little person and her friend, of course, has her own ideas of how to playing works, everything was great!

I laid out a plan and we followed it as well as we possibly could, minus neither of them sleeping until midnight, I don’t care who you are if you are at a sleepover no one sleeps. The morning went off without a hitch as well, Shopkins® were played with again (the latest obsession with kids ten and under I think), breakfast was eaten. Both girls had different breakfasts because one will eat pancakes, the other only toast, but they both love bacon. They baked a cake together and they spent time as best little friends.

Then we went to the spray ground! We met another of my friends and her two boys and the kids all played well together. There were other kids who came and went while ours played and we watched enjoying the day. The spray ground here has a fence around it and parents can sit on a bench and watch or join in, for the most part, the equipment is perfect for kids and they all play well together. The day was perfect and for the most part uneventful, until the lack of sleep started kicking in for the girls, but it was nothing I didn’t expect.

Now why on Earth would I write a blog about how perfect the day was? Why does any of this matter? Well, it matters because the four kids in my story, the little girls ,and the two boys they all have been diagnosed with this or that or are in therapy for one thing or another. If I were to take the cute pictures of the kids I took today and wrote the labels over their heads everyone would be surprised. In these pictures, they look just like kids doing exactly what kids love to do having fun. We talk all the time about raising awareness and this is exactly what I want people to know and see about our kids, they are just that kids. I am not just talking about Autism awareness either because that is not the only diagnosis the four kids have there are multiple labels, but right now I don’t want to discuss labels I want to discuss children. They may have different or weird interests and process the world differently, but they are humans. They are funny, they have the best stories, they are kind and caring, they get whiny and need hugs, and when they are done they are done. That doesn’t mean they are brats, spoiled, or need to be spanked to act right. The beauty of today was that all four of these wonderful kids, one of whom I have the pleasure of raising, were all being themselves. They were being wonderful with the intricate complex minds they were born with, and nothing could have changed the sweetness of these kids today. If anyone wants to be aware of anything may they be aware of how wonderful someone with a different way of seeing and experiencing the world can be. Yes, it can be hard for our kids and for us at times, but in the end days like today are what make the doctors visits, the therapy, the meds, the heartaches and triumphs all worth it.

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Food

Anyone who knows my child will know that she “lives on air”. Today was a prime example of what people mean by that. It is now 2:33 in the afternoon and she is still not asking for food, or willing to accept any. That isn’t an unusual day for her, and I hope this coming school year her teacher will be understanding of this and not try to force her to eat. Forcing her to eat is a very bad idea assuming you don’t like vomit everywhere.

So today as I am driving back from her vision therapy which is an hour away, I tell her we should stop for food. Her response is “I don’t wanna, I hate food.” To which I stated I truly believed. So what is the big deal? She’ll eat when she’s hungry, that logic yeah I love it, except you know when she doesn’t eat without the aid of medication, but I think we’ve already gone over that whole fiasco. Anyway, this got me thinking about a beautiful word that all parents know or at least should, synapsis. Oh yes, those funny little things that wire our brains in early development.

Our conversation got me to thinking about some of our earlier conversations, and just to be clear this is a theory of my own, not anything else. It may not even be fully scientific, but from everything I’ve read about synapsis, just hear me out here. She and I have read books about senses, and about taste all that great stuff. How smell can tell your tummy your hungry. The idea absolutely floors her, she tells me over and over my body doesn’t do that. I swear she thinks I’m making stuff up. However the more we discuss food, the more I find she really does have a hard time understanding a general need for people to eat three times a day. She has medicine to stimulate hunger, that usually gets her up to about a thousand calories a day. Which believe it or not is a giant step for her. The summer has its ups and downs for her, because of the irregularity, so even with meds, she slips off the scale some. Unless she is at summer camp or a structured activity for at least half the day. So this has had me thinking for a while. During those crucial stages could it be that the little synapses in her brain that affects food, just kinda laid down on the job? Anxiety does play a role in her eating habits, but from an overall general standpoint, I truly believe if she never had to put food in her mouth again, she would probably be just as happy. So where did this odd phenomena come from?

The more I think about the way she talks about food, the more I see she has an almost general disregard for the entirety of food. Don’t misunderstand she does have favorites but for the most part, she could take or leave it. More often than not it is me reminding her eating is a must and it seems almost a chore for her, than something she is ready to do. The only time she ever reminds me about eating is if she hasn’t had chicken noodle soup and tea before bedtime. Which is not to say she eats the chicken noodle soup but rather she feels that it is a nessiccary food to examine before one sleeps.

I know some of you have kids who have food related troubles, any ideas or theroys of your own? What’s the worst thing you’ve had to deal with when it came to food and your kids?

 

Spoons?

Let me apologise for my lack of entries, I suffer from migraines and have been in a battle. Today, I am feeling better, and wanted to share this amazing youtube video with yall that I found. The lady in it is Christine Miserandino, and she has this amazing theory about spoons. Okay well maybe not spoons themselves, but the video explains all too well what life is like living with something that is chronic. For me it is my Hemidystonia, for my little girl it is Autism, and for other members of our family, it is mental illness. After watching her video, it made me think how prevalent and relatable what she said was to not only me, but to my little girl, and other family members.

With Autism, from what I have seen with my little one, it is like she has to have everything planned, one false move from mom, one minute of change, and boom there we go, all the spoons have been lost, count today a goner. Tonight, thanks to my boyfriend who is amazing, and bought her glow sticks, which I put in her bath, was the first night in over a month there wasn’t an argument about having to take a bath. For those of us in another form of ongoing health dilemmas the shower/bath is welcomed but hard to get in and out of, for her, it is no different. Except she has to mentally prepare for the change of texture and temperature, something I’m sure is akin to being naked in mid-winter in Alaska then jumping in the water. I saw Ms.Miserandino’s theory coming to light, in her situation.

Of course, it goes without saying I totally related to her words in the video myself, and I couldn’t wait to share the video with you guys. I hope that you find it as relatable as I did, for not only myself but my little one.❤

Here is the link to the video, Spoon Theory. I do not own this video, it is Christine Miserandino’s, I just happen to love it.

 

When the Food Police come Knockin’

First, let me just say, sigh. Yes, sigh, we have all been there our kids eat like three things and we are just happy they eat. Right? I mean seriously, it was not my idea to have my child live off chicken noodle soup, pizza, and chicken nuggets, but here we are. It isn’t for lack of trying to give her new foods, it’s because she simply won’t eat new ones, “yet” to quote her. Whatever the reason, she is dead set against the newest of the new, aka fruits, vegetables, meat other than chicken and pepperoni (Oh yeah I get bonus points because she’ll eat those on her pizza, whoot!), anything that could possibly give vitamins. So why the big fuss? Other than the obvious well have you tried this food police, in come the doctors.

Here is the difficulty, not eating other foods, does affect overall health and function. It is hard for Midge to go to the bathroom many times because she doesn’t have enough in her little belly to digest, so her poop is like dang rabbit pellets, and it takes her thirty minutes to get three out. Who needs to know that? Another parent who may be facing this same struggle for the first time is who. We just went to the doctor today, compared to when she was tiny and more on a shove a bottle in or’ pie hole until it was gone schedule in the 90th percentile for height, and somewhere around average for weight we have slowed way down. She is now at fifth for height and twenty-fifth for weight, why? Her eating is just not there. We are picking up from where we were, which is good, but could it be better? Possibly, but goodness what am I supposed to do, hog tie her and force feed her? I doubt that would go over well. Her hemoglobin is down as well, causing her to need medication for that as well. Eating too little is just as bad as eating too much for a child.

So today I received two lists of things for her to eat, and was told by the nice lady at the doctors office to bring her back in a few weeks. As I look over the lists and at my now sleeping child, I silently chuckle to myself, because looking at half of these foods, would probably just make her barf, or run from the table. We don’t push new foods too much, because for her eating anything is better than nothing, and she will simply shut down and not eat at all if she feels uncomfortable with a food on her plate. It isn’t disrespect, or disobedience it is simply an overwhelming urge to throw up when she looks at the new food. I try my best to put myself in her place and understand that if eggs (which I hate) were set in front of me, I would be puking too.

So what is the point of my ramblings this time? My point, to the people who don’t understand please don’t judge the twelve cans of chicken noodle soup, five frozen pizzas, and a half dozen bags of nuggets in my cart. I am just happy my child is eating, and if that is called coddling or bad parenting oh well, at least, she isn’t starving to death. Yes, my child will starve herself, she is on meds to make her eat because there was a week where she literally didn’t eat. So stop telling me that garbage, it may be true for 90% of kids, but for many of our kids who aren’t NT, it isn’t. And for the parents who relate all too much to this post, please know you are not alone! There are other moms out there, buying out the yellow bag, with red writing, chicken nuggets, praying that they don’t change the writing blue.

Our Forgotten Kids

 

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Image courtesy of themamabeareffect.org

 

Today started Autism Awareness month, but it also started Childhood Abuse Awareness month as well. First, let me state that all of our kids with special needs have it rough. Now let me also fill you in on this, the kids who have been subjected to abuse are also special needs kids. The big difference is that abused children were not born necessarily with their special needs, but they were inflicted upon them. Sometimes like with FAS yes they were born with them because of abuse, and sometimes yes they are left with scars or very obvious physical problems, i.e. survivors of SIDS. In this case, though, I am talking about the abused kids with invisible disabilities, that many do not take seriously.

 

Abused kids many times suffer from Post Traumatic Stress Disorder as if it wasn’t hard enough to grow up, let’s just throw in a little PTSD, on the side. PTSD can cause violent outbursts, anxiety, unreasonable thoughts, flashbacks, and more. However, many of our PTSD survivor kids are refused services by schools to help with these issues, because they are just going to have to deal with it. If my child who is a nonsurvivor, who has anxiety, but an ASD diagnosis can have five to ten minutes to adjust, why can’t a PTSD child?

Survivor kids are may have a hard time expressing or explaining themselves because they have been oppressed by their abuser for so long. Once we get these kids out of their situations, which I pray every one of them makes it out alive, we offer them no services. Speech therapy could help them learn to express themselves better. These kids are falling through the cracks and being failed by our lack of willingness to help. Simply talking to a counselor twice a week is not going to help alone if we want to help end abuse cycles.

Our survivor kids may have physical delays due to the type of abuse they suffered. If our kids who are born with disabilities had a need for therapy no one would bat an eye. Some of our survivor kids are to scare to speak up about the pain, and since they don’t state anything themselves, insurance companies don’t want to pay. Some doctors will even overlook what should obviously be painful because a child doesn’t speak up. This would be another good example of when speech would be a good tool.

There are so many things that abuse affects, our survivor kids may also see failing grades, but be written off as lazy, ill-tempered, or unteachable. So much is overlooked or written off with survivor kids. The worst part is the people who love them and take care of them, are pushed off as well, as either being overbearing or being at fault for not preventing the abuse, they didn’t know about until it was too late. There is so much more that affects survivor children, that I can’t write or begin to explain in a blog, but I know they need more help than what they receive.

Our kids are falling through the cracks with 1:4 being victims, of child abuse. Forty-seven percent of those kids are five or younger. This is what the CDC reports. With such an alarmingly high rate, why aren’t our survivor special needs kids, receiving more support? Why do they have to feel revictimised, because someone decided to inflict a special need upon them? Survivor kids aren’t like other kids with special needs, who for various reasons were born the way they were; survivor special needs kids, are special needs because an adult made a conscious decision to make them that way. So this month as we light it up blue let’s also go out in our ugly ties, as well for the Tie One (tieone.org) campaign, because nothing is uglier than a child’s life being stolen from them.

For more information on how you can help these wonderful kids, please visit, The Mama Bear Effect, the people on this page are awesome. They also have information to help you talk to your own kids about abuse, and how to report if you suspect abuse, as well.

I know this wasn’t related to my main topics, but it is a very special and important discussion that needs to happen, and soon before one more child is lost to a predator’s hands.

Deformed

Well folks, let’s just say this word hurts a little more than I’d like to admit. So does this twisted up limb that is disguised as a foot. Tonight has been a long twisted, thought filled evening, of sitting in bed feeling sorry for myself. Sad but true, I have a long list of things I need to get done, and what am I doing? Sitting on my duff, because I stood on the side of my foot most of the day, and well it hurts like the devil to put weight on. So I have worked on my blog, and researched as much as my brain will hold. However, getting back to the aforementioned word. Deformed, a customer at work told her curious mother that was what was wrong with me, I was deformed. While yes eventually, I guess that would be the correct word, it isn’t what is wrong with me. I have a disease a stupid disease, that on my best days I ignore, and my worst because today has to be my worst, never have I let it win like this, I sit on the bed after I get home and mope. The disease has a name, the name is Hemidystonia, and it is in a family with other Dystonias, yada yada. My point is how many times before now, did I even bother to care what was wrong with another person? I could look at them and see something was a miss. Would I have been so rude after the age of five? Probably not? Will I be teaching my little one, to say something entirely different? Yes. I know her, she is not going to stop to think oh I probably shouldn’t say this, she is just going to say it.

So what would I have rather had the lady say? Well it would have been nice when I brushed it off as not a big deal if it would have been left alone. When the woman said, “Mom, she’s just deformed” and I stated “I have a muscular disease” the “Like I said your deformed” I could have lived without. If curiosity is a giant factor and you must know, I guess something along the lines of “I see your hand is turned what condition causes that?” or something to that affect would have been less harsh to my ears. I talk to people all the time in my line of work, who have various condtions, some people educate me to the fullest extent possible and others are not so comfortable talking, about it. I’m not one for banning words or waving banners about being offended, because I know it encourages some people to use them more, to just annoy others. So I wouldn’t ask that, at all. What I would ask is for people to think a little more about how they phrase things. I have always admired people who had to over come so much to achieve their goals, and in the long scheme of things whether it is physical, mental, or emotional who among us hasn’t had to fight to achieve? A deformity is a miss formation of one thing or another, and in some ways we are all in that category I guess, but we don’t go around pointing it out. Please let me know the next time someone says your emotional well being is deformed because of the you react towards blah.

The more I deal with these spells of spasms and eventually have to face a harsh reality that one day my muscles may not release. The more I think of two people I attended school, and how amazing they were to me. Not because they were different physically, but because they never gave up, and always seemed to keep going no matter what. They always amazed me. I remember the guy was in my second grade class, and even though I don’t remember much about that year, I can remember being disappointed he wasn’t around in third grade. He was always just a cool guy, funny and nice, he always had a smile on his face. Now that I am grown and have my little one, I occasionally see these two individuals, and they are still people who push on and over come. Something in their will power encourages me.

Now as always I will bring things back around to the little one, because she is adorable and sees the world in different ways. Her speech therapist, who is about to have a baby, also has something that causes her feet to turn, I am not sure of the condition. Near the end of her pregnancy she started to have to use a walker. She was obviously self conscious about it, my breath caught in my chest the first appointment she had it, not because it was there, but because I knew my little one would say something. Here my child was giving the walker the once over, her speech therapist bracing for whatever was going to come out of her mouth. Here it came easy as pie. “I like your walker, it’s a pretty color.” Her therapist’s face lit up, and I suddenly found oxygen in my lungs again. The world would be a much nicer place if we could all find the beauty in sitautions, we don’t even know we are finding the beauty in.

The writing part of things

While I sit here, with my foot being a decided nuisance. I thought I would research and work on my blog. My goal is to eventually make a living writing, not a blog but books. Books that take people from the places they are and gives them an escape from their day to day. I want to write books that inspire people, that make people think. I want to write books that leave people wanting to read more of my books. Somewhere between Poe and Alcott would make me happy. Looking through my posts, I really haven’t touched on my writing or my love for it. I haven’t shared with yall, the reason I even started a blog to begin with.

When I started looking for a way to make money as a writer, everything except the kind of writing I want to do came up a source of income. Copywriting, Techincal writing, Article writing, the list goes on, the one thing they all had in common was it seems everyone needs a blog these days to go anywhere in writing. So here I am on the proverbial bandwagon. My love for telling stories reaches back further than I can remember. I have things from when I was a kid that were saved where I made up stories. Stories are a part of me like the clouds are part of the sky. Grammar not so much thank the Lord for Grammarly. I think I may write you guys that follow my page a little story, just for my blog. Yall tell me what ya think and I will gladly continue if I get enough feedback. Yes, that would require some commenting.🙂 I told yall, I want to make this thing interactive, I will post part one of my story as soon as I get to the 25 followers mark. I hope to make it.

I will give yall a choice of the starting line, though.

A) This is the story of….

B) Once upon a time….

C) “Now wait just a darn tootin’ second!”

D) It was a nice life, a quiet life, and then….