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Thank you, for letting me be your Number 1

DSCN3622I’m going to get a little personal, but that’s kind of the point of a blog.

When I was less than a year old, my biological sperm donor (others might refer to him as a “dad”) abandoned me. He never looked back. For reasons I don’t understand, I was less than number 1 or 2 or even 65 in my new “father’s” eyes. My mother loved me, as long as I had her back and agreed with everything she said. My father’s friends, who were all like fathers to me, abandoned me, one by one, without a word. In school, I was teased, bullied, ignored, and kept out of the loop. I never fit in. The friends that I did make, treated me like someone you just kind of consult for a problem, blatantly ignore, than expect to pick up the pieces afterwards (when the advice was not followed). I very recently had my “best friend” accidentally text me a message that was meant for another friend, which stated; “yeah, this is what she texted, and she doesn’t even know the whole story because I never told her.”

There’s nothing like finding out that one of the last 2 people that you had hope in, that you believed in, that you loved, doesn’t love you as much back. They put up a good face and tell you “well, you have your own stress, so I didn’t want to overwhelm you.” But that is just as horrible a degree of discrimination as other ways (for us parents that have a child with an overabundance of awesomeness). Here I am, kept out again. Rather it’s because of my own personality people can’t stand, or some other factor (such as my love for psychology and ability to read people). I don’t know. What makes a person so unlovable that even their father doesn’t want them? That people talk behind their backs and lead them on? It is happening everywhere, to everyone, I’m sure. I’m not alone in this. And my poor baby, who has a diagnosis that will follow him forever, will be treated the same.

But that isn’t what this particular post is about.

All of that was a prerequisite, so that the reader could understand the words hereafter.

Thank you. Thank you to my husband. Thank you for always treating me like your number one. In my world of would be parents, would be friends, would be relatives and all else, you are the only one that has shown time and time again, that there is NOTHING about me that you don’t love. You have treated me in such a way, that I can only hope to my very core, that our children will find in someone else (partner wise). If our son, who will be singled out for his diagnosis, can find someone to love him, like you love me, I will have no regrets. The same goes for our daughter.

When I look in the mirror, and find a flaw; you showcase it and remind me how wonderful it is. Making me forget that I had ever seen it as anything other than wonderful. When I cry, you don’t try and reassure me. You create a giant barrier of comfort and ensnare me with it. You hold the pain and let it work its way through, and remold the pieces afterwards. You don’t try and control my anger, but try and remove the reason for it while I let it out safely elsewhere. When I’m sick, there is no better care taker than you. You know my physical limits, let me push them, but keep me from causing permanent damage. When I find a new hobby, you ask questions and try and understand it. Instead of rolling your eyes or ignoring me; you try and help me and even ask me to teach you, so that we may share it. You shamelessly tell me your dreams and respect every ounce of criticism or enthusiasm I throw your way. You ask for my opinions and truly want to know the answers.

You accept me for me, even when I’m not sure who that “me” is. Having a child that demands a lot of extra effort and time, has caused me to lose sight of many of the things that would create a peaceful inner self. But you love me never the less. You accept every change I have thrown at you. Even when you announced you wanted to be a chef and I announced I wanted to be vegan. You quickly changed all of your recipes and even started baking vegan yummies. You have NEVER shown a speck of repulsion, disdain, boredom, or regret with me. You have always said that my happiness comes first, and have showed me so very many times.

At the lowest of my lows, you don’t give up on me. At my highest of my highs, you lift me even more than I thought possible. I don’t know what you have seen in me, all this time, that has kept you so in love with me. But I imagine it is similar to what I see in you. There truly would not be a ME if there had not been a YOU. You are my first and foremost. Your love for me is what keeps me going during the hard days. Knowing that soon, the one who truly sees me, will be by my side again, keeps me from going insane.

There is so much we have accomplished in these last 10 years of marriage. There is so much that we have gone through; more than most people know and more than some people will ever even have a hint of. Will we push each other mentally? Yes, because we are so connected and experiencing the same pain. But we will always rise above it. When the Earth chooses to move its plates, there is nothing that can stop it. So too, is our love. Whatever comes and whatever goes; know this one thing: I love you, for you. Not the you others see. Not the you the kids see. Not the you that you see in yourself. But you. The you only I know, only I see. And that is enough for me. You are my number 1 and all other numbers (save 2+3 for the kids).

Thank you. Thank you for letting me be your number 1.

Happy Anniversary

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Life is too short to be #50 on someone’s priority list

20170510_142044There have been a lot of posts on Facebook recently about family and how if they are your blood, you have to support them. There’s memes saying that the reason the world is such a bad place, is because people “just throw away” their relatives and friends. Looking at it from a psychological viewpoint, I see more of how the person who posted it is feeling, they are saying; “I’m family, you can’t give up on me. I need love.” And while this is fine, and a round about way of getting it…it doesn’t work and it isn’t healthy.

I can already hear people arguing with me. But what I’m saying isn’t to give up on everyone because it’s too hard. What I’m saying is; there is a breaking point when enough damage has been done to where not being a part of someone’s life can benefit you MORE than being in their life. Let’s put this into simpler ways of thinking.

If someone hands you a dozen cupcakes, do you eat all of them? No, you eat until you are full and then save the rest or toss the rest (sometimes that’s 1 cupcake, sometimes it’s 3 :p). Emotional baggage is the same way. If someone treats you like you aren’t number 1 or even number 10 or 30, and you continually treat them as if they are number 2 or higher, eventually, you get tired of it. You are continually eating more and more cupcakes, even though it is clearly making you ill. You eat it all, simply because it is there and you feel as though you have to. Eventually, the pain of constant ignorance, selfishness, laziness, lack of trying to understand, lack of communication, lack of caring, lack of whatever, becomes too great of a burden. (you throw up too many times from too many cupcakes). This can take years. Everyone has their point where they look at the situation (cupcake) and say “why am I doing this? Why do I put forth all of my love and effort into someone who doesn’t care? Someone who treats me as if I am merely a decoration, not an actual physical being?” If you find yourself asking this question, and you decide to drop that person down a a few pegs or knock them off your board completely; I think you are doing the right thing. Why should you put yourself in pain emotionally when clearly they aren’t putting forth the same effort to you?

So what do you do? You can drop them out of your life completely, which can be difficult. Or you can drop them down to the same peg they have you on. If someone sees you as number 50 and you’ve had them on number 1 or 2, try dropping them down a few notches and see if your emotional state feels a bit better. This is not a case of treat someone the way they are treating you. This is a case of; if you hold someone in great regards and importance, and they don’t hold you in the same way; try another approach. Clearly, you are putting in more effort into it than they are, and there is a reason for it. If it isn’t enough and you are still exuding too much effort and resources, drop them down a bit more. There are reasons people treat people the way that they do. If you are treating someone better than they are treating you, maybe it’s because they just don’t see you the same way you see them. Try a different perspective. There are consequences to these actions, and they come in a few forms.

  1. The person may realize that you have dropped them down to the same level they hold you at, and will frantically try and “win” you back. This action is common but be careful. Has the person done this before? What were their previous actions like? Did they slip back into thinking you were too much of a burden? Be careful putting them higher on your pegs again until you know that you aren’t going to end up in the same spot.
  2. The person may realize what you are doing, and not care or even be grateful not to be up so high in your list of priorities. Sometimes people don’t know how to tell you that you have latched on in a way that makes them uncomfortable. Giving them and you space can help you both to feel better. Sometimes people just aren’t ready for the status you have given them, lowering the peg can give them time to change, and you time to reexamine their position in your life.
  3.  The person sees what you are doing, and tries to become higher again, but you KNOW that game and stick to your guns. This one can end in a few ways as well. The person may give up and decide that being number 50 for them is not good enough, and start to back away from you completely. In this instance, you should be happy you made the first move and you can begin to heal. The second way, is they stick to trying to change and make you a bigger part of their life. This DOES happen, but it is rare. If it does happen, it can mean that all that person needed was a wake up call to see just how much pain you were in, and they decide you deserve better than what they had been giving you.

There are probably others, but I’m writing this quickly while my Little Man is preoccupied lol.

Remember, communication goes two ways. If you back off on communication (or withdraw it completely) they have the ability to try and regain contact or to let it all go.

Things change, people change, perspectives and circumstances change. It is ok if you change too. I think people keep the same friends and put up with bad relatives because of a feeling of “loyalty” or a fear of trying to find something better. But loyalty is a 2 way road, if the person isn’t treating you “loyally” but you are treating them that way, then it seems like a waste of your potential, your energy, your balance and well being.

Disclaimer; All of this is in reference to older people, NOT CHILDREN! If you have a child, and they don’t treat you the way you wish that they would, they ARE YOUR KIDS AND YOU NEED TO FIX IT! Children are not capable of adult thought, problem solving, rational or any other manner of being. They are simply children. I am talking about dealing with ADULTS!

Think about this in another way; if you had just painted the Mona Lisa (one of the most famous paintings in the world) and your dad said “I painted that masterpiece.” You’d be P*ssed, right? You’d think; “where were you when I had to beg for the money to take art classes? Where were you when I had 2 jobs to buy the paints? Where were you when I sat for hours doodling female faces? Where were you during the weeks I sat trying to finish it?” You wouldn’t put up with it, right? You’d probably call up every news station and show them proof that you had done it. So why is your emotional state any less important than a physical accumulation of achievement? If you have a family member who was none existent throughout your child hood, let you down in your teenage years, was less than helpful in your beginning grown up years, but still proclaims that you are “their” fabulous daughter, niece, cousin..fill in the blank.. while doing nothing to show that effort; when does it become enough to where you just STOP? When do you say; “ok, I’ve been your number 45 for ____years, while you have been my number_____. I need to leave that spot open for someone who views me in as high regard as I view them AND who has consistently shown me the same love and respect.”

Life is short and so are your personal resources (emotionally and physically). Give what you can, but make sure you take care of yourself. Sending love to anyone who needs it.

My Feline, My Friend; Why the Passing of a Fur Friend Can be Harder than the Passing of a Relative

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Miss Molly (the black and white one) suffered from Stage 2 Kidney Failure. At least; that was the diagnosis 2 years ago. She drank water, ate a little bit of food, but held on strong. She was loving, affectionate, and meant everything to our family. But as the preparations for moving became more and more intense, she became more stressed. Yesterday, she threw up over 15 times, drank literally cups of water (only to throw them back up), wouldn’t eat, could barely move, and had a high fever. I rushed her to the vet. There were 2 options and so many “maybes.” IF she had something curable, we may not know from the test result until we were already on the road (we’re military and have a deadline to get where we need to move to). However, since she was already stressed, chances were greater that the move itself would kill her. Since the trip is going to take over 10 days and goes through some very isolated areas; it was clear what needed to be done. I couldn’t let her die in the car; frightened out of her mind, miles from home, with no way to cremate her body. So I decided to let her pass in my arms, purring her gentle song. I have not stopped crying since.

A million things go through your head; did I make the right decision, could she have survived the trip? But in my heart, and according to the vet, this really was the best option. She was very sick, and not necessarily curable. Her kidneys were shutting down and she couldn’t hold down food or water. But that doesn’t mean I don’t find myself, blaming myself. This is one of the ways in which the death of a fur baby can be harder than a relative. I’ve never had to end a relative’s suffering, so I can’t compare those instances. For my own comparison; her death was harder than any natural death I have witnessed. But it is not only that, that makes this feel impossible to deal with.

I think I figured out why I am “taking it so hard.” When I graduated from high school and went off alone to college, I was alone. I had no one. My parents had separated and staying with either of them was not an option. My boyfriend chose a school over 4 hours away, and my friends had scattered. I went into Petco to get a feeding ball for my bunny, and noticed this sweet tuxedo (black and white) cat with black polka dots on her white paws. I giggled and said hello to her. The lady said that she was a stray that had kittens; the kittens had been adopted but she hadn’t. They had been calling her; “Molly.” I looked at her, shivering in her litter box, and knew I had to take her home. She stayed hidden under my bed for 1 month. She would exit the bed to eat and potty while I was at school, and when I returned, she hid again. I talked soothingly to her, sang to her, and treated her like a girlfriend. And on the day of month 2, she came out. Since that day; she has been the most talkative, affectionate, and selfless cat I have ever met.

She lived through 5 dogs, 7 cats, 2 birds, an iguana, a crab, 8 moves, 2 kids, a boyfriend, and a husband. She lay with me over breakups, cuddled with me as I zombied through 2 am feedings, she gave me courage when my husband went off to basic training, gave me confidence when I was alone in the big city. She showed me how to have patience with my kittens (kids), and how to treat naughty boys (the male cat). She slept by my head while I slept, and stayed under the blankets on the couch when I was sick. She nuzzled my hand to remind me not to be angry, and nudged me to remind me to care for others. This is why her death is so impossible to deal with. Because she was not a “pet.” She was a friend, a mother, a grandmother, a confidant, a therapist, a doctor, a part of me.

She stayed with me when others did not. She helped me through things others could not. She never yelled, never blamed me, never turned my problems around on me, or complained about how her problems were worse. She never expected anything in return, but gave all of herself. She’s been with me even longer than my husband has. Whereas other abandoned me to pursue selfish desires, or ignored me in favor of a game (W.O.W.); she stayed with me. Whereas other blamed me for their mistakes, or never let me live down my own; she accepted me for who I was, faults and all. Aside from my husband; NO ONE has been with me as much or for as long as she has. And now; she is gone. My best friend, the one who was there every second of the day, without ever so much as a harsh word or complaint; is gone. Nothing can describe the pain I feel. Nothing can take away this feeling of loneliness; like a piece of myself has been ripped from inside me.

To make matters worse; I am not the only one who is feeling this way. Both of my children have lived their entire lives, with her in them. They have never felt the pain of a loved one’s passing, and it is heart wrenching to watch. My 7 year old daughter deals with it by drawing pictures of her alive, and saying she loves her. But my Autistic 2 and a half year old; I have no idea what is going on in his head. I know he misses her, because she was one of the first signs he learned “kitty.” She would rub against him and he would pet her, every single time (she was VERY affectionate lol). When he was stressed, he would look to her and pet her to ground himself. She would stay downstairs (whereas the other cat spends his life upstairs on the bed). She would lay next to him while he worked (ABA), and he would follow her to the litter box, wait for her to finish, and they would walk back together. She was his best friend. She was his link to the world. She gave him a way to communicate, to show affection, and to learn how to deal with his emotions. Now that we are moving; where does that leave him? His entire world is being turned upside down, in ways other people can’t possibly understand. Autistic people thrive on schedules and routine; now, not only is his house changing, his city changing, his ABA teacher changing, his room changing, and now, his best friend is gone. This seems so cruel, so unbelievably cruel.

Is this pain that I’m drowning from, worth it? Yes, yes it is. The wonderful years she gave me, are worth the pain I am drowning from now. She was wonderful. Do I know what this will do to my poor Autistic son? I have no idea. I have no idea how to help this. Maybe I can work on not crying, before I can help him.

 

Isolation Breeds “Normal” Behavior

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Little Man has just been excelling at his ABA. He makes eye contact, he looks when you call his name, he’s sharing, he’s pointing, he’s describing the world around him through the use of sign language. When the child development specialist came to the house for her last assessment before we move; she said he’s above average in cognitive abilities, problem solving, fine motor skills…etc. But that he is still at a 20-24 month level for communication (he’s still none-verbal). “All in all” she said, “it means he’s average.” She meant this in a good way. She was trying to say that his Autism “wasn’t that bad” and that he had made enough progress to almost seem “normal.”

I wasn’t happy with this. It burned a hole in my chest to hear the term “average” and “normal.” I don’t appreciate being lied to, comforted with false hope, or given claims of grandeur that are not earned. Don’t get my hopes up like that. But, of course, being a mother; was immediately hopeful for his future. I thought “he has a chance.” Then, we went to a friend’s for dinner; and reality bitch-slapped me in the face. He was so distracted by their dog, that he wouldn’t listen to his name. He was so enthralled with their big plastic house, that he wouldn’t turn his head when I called him. When we got inside and discovered that the little girl had a close-able baby gate AND stairs up to her bed…I lost him. I spent what was supposed to be a night with friends; walking after him to make sure he didn’t fall down the stairs, help him get the gate to stay open while he pushed the stroller over it, get out of his way while he closed the gate, turn around…and do it all again. It instantly became a ritual, one that he could not be persuaded to stop. Not for food, not for other toys, nothing.

This series of events was excruciating to not only me, but my husband as well. All of the “progress” he had made and all of the “normal” we thought we had; was an illusion. His “normal” behavior only took place at home because it was familiar. “Why can’t you just socialize him at people’s houses and get used to new surroundings?” I hear people asking me. “Oh, well, glad you asked *clears throat* that would be because; NO ONE WANTS US OVER!” I am being 1000% truthful when I tell you that the friend I just mentioned is the ONLY friend I have that has not only come over to our house for dinner, but has also had us over for dinner, SINCE MY SON WAS DIAGNOSED WITH AUTISM! NOT KIDDING! And the two dinners we are talking about? happened one weekend and again the next. That’s it. No other dinner plans, nothing. Every time I try and make a play date, people have an excuse. Every time I try and set up a lunch or dinner, people have an excuse. But I digress.

Little Man seemed normal, because he was comfortable, he knew what to expect and when, at home. And now; we are moving in a little over a week. His world is about to crash to the Earth, and I have no way of stopping it. I can slow it down a little, but not stop it. This move is also, not just down the road; it’s across the f*cking country. I hope he doesn’t give up on signing. I hope he tries to communicate all the way there. I hope that when we get there, he gets a fantastic new therapist (ABA) to work with. I hope he feels “normal” and safe again in the new home. But truthfully; I am scared shitless.

Social media is like a poisoned apple

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You hear about social media all the time, you see it on everyone’s phone. One of two things will go through your mind; “what a dumb idea to get people to pay even less attention to each other” or “oh cool, now I can stay in contact with everyone!” Both of these statements are true, and more.

Social media looks nice; like an apple. An apple is wholesome, delicious, nutritious, and you’ve been told it’s good for you. In many ways, an apple is extremely good for you. But if you drink an entire jug of apple cider; you’ll get the runs. If you spend too much time on social media; you begin to lose sight of the important things, and may lose track of more than just time. You may be subjected to things that you don’t want to be subjected to. You may see things that go against your core beliefs. You may hear stories that make you want to rip out your heart. You may see photos of things that no matter how hard you try; you can’t forget them. You may read articles about things that make you lose all hope in the universe and especially in human kind. This is especially true if you have children with “special needs” or as I like to call it; “an overabundance of awesomeness.”

Picture this; you are scrolling through your feed, checking on family and friends, when you come across an article all about how a child with Autism was beaten to death by other kids. Who in their right mind wants to see this? No one. But everyone NEEDS to see it because it opens their eyes to problems that are out there and things that need to be dealt with (not just shoved under the carpet). People need to read the bad stories, the horror stories; so that they are reminded that real life isn’t always sunshine and rainbows. There are mosquito-hearted people out there, and you must stay vigilant. At the same time, this poison in the apple can cause permanent damage or even death to people.

By seeing time and again how people can be heartless and down right demonic, it can lead a person to lose all hope in the world. It can cause parents to make drastic changes (for good or bad) in their kids’ lives. People see a miracle cure for Autism in rats that were fed purely fruits and vegetables and suddenly the child’s favorite foods are all gone. Parents read an article about a child being murdered by classmates and they decide to home-school (this is actually a good effect, but you get the point). People post endless injustices that they feel are taking place in the world, they complain endlessly about their days and their situations, and it takes a toll on everyone. It’s important to remember that this poison apple is also an apple; and it is the “apple” part that keeps you alive.

Posting positive messages by people overcoming mental/physical battles is heart warming. Posts that show people of adversity conquering their demons is a reminder to everyone that; you too, can do this. Positive posts can show people going through the same thing you are, and defeating the same darkness that you are. Without seeing what other people have accomplished, sometimes it’s impossible for us to even imagine such a goal. A person feeling helpless that their child can’t partake in Halloween because they are in a wheelchair; can see the post about the dad making his son’s chair into an awesome costume that beats the pants off all the others. Without posts about children learning how to talk by using the latest gadgets, other parents may never have known that was even an option. Watching simple videos about kittens or seeing simple memes with positive words that have a flower backdrop, can lighten a heavy mood.

My least favorite person on social media, is the person that never posts anything positive, or the person who always posts the same things. If all you ever do is complain, and you never post anything uplifting, chances are; you’ve been deleted or your notifications have been turned off. If you show nothing but all of the struggles people face today, but never show me a person overcoming them; you will be deleted. Do you think I endlessly talk about how life is a struggle for reasons A, B, and C? Nope. I post a “poor me” post maybe once a week or every other week. The rest of the time; I try and post things that are real life drama but also real life beauties. I’ll post about how feminism isn’t about “girl power” but about equality. I post animal clips from BBC and Jeff Corwin. I’ll post the meme to help lift your spirits, and post videos of people doing the unthinkable. I want you to live a happy life, but I want you to live it with your eyes open.

I don’t partake in the poison apple everyday. Some days; I want the whole world to shut the H*ll up and leave me alone. Other days; I look for those that have been through what I have, and give me a way to make that connection. Other times I just want to see a pointless meme about cats being jerks. While other days; I need a recipe for my cookie collection. Seeing reality on the news or in people’s stories can (at times) be overwhelming, and it should be. This is real life; not a fantasy. But real life doesn’t have to be darkness and sadness all the time either. Take a bite out of the poison apple. Enjoy the sweet scent of children being treated as equals, instead of inferiors to one another. Enjoy the crunch of a person doing an unforgettable stunt. Smell the bitterness of a reality clip portraying horror in the world. Keep it forever in your mind; so that you may try and make the world a better place. Always remember; this is your life. You choose how much of the apple to not only eat; but also what kind you choose to feed to others.

Be kind, my friends.

Blessed Be ♥

I wish you knew:

I often wonder if parents of “normal” children ever read articles posted by parents with autistic children. I wonder how they feel about them. I wonder how they feel about their friends/family members or people they might know that have Autism. If you are one of those people/parents, there are a few things you should probably know about us. The dark side of us. The side we don’t talk about or write about because we are ashamed. The part we keep hidden from the world because we’re tired of being judged, side.

  1. Isolation is a fundamental term used by parents of “special needs” (children with an over abundance of awesomeness) children. Don’t think for one second that we don’t notice the lack of birthday invitations. Don’t think we don’t see your post about what a fun night you had, and yet we were invited to. We know. We notice. We just don’t say anything. It’s like we’re being punished for having children that take a great deal of our time. We try harder than most parents out there, and yet this effort is seen as a weakness. Maybe you think you’re doing us a favor by keeping us isolated. Maybe you noticed that we keep ourselves isolated and therefore you determined that we would say no; so there’s no point in asking? We keep ourselves in isolation so we don’t cause unneeded stress for our children and those around us. We know you don’t know how to act when they have a meltdown. But that doesn’t mean that ignoring us is the right course of action. We need our friends now more than we ever have before. And all too quickly, we find out how many “friends” we really have.
  2. When you complain about lack of sleep, I will ALWAYS laugh. I’m not about to even TRY and hide how ridiculous your complaint sounds. Sleep deprivation and children with Autism, practically go hand in hand. Rather it’s a complete and utter lack of naps in the middle of the day, or the night terrors that shake the house every hour during the night; we live in a constant state of zombieness. We haven’t slept since our child was born. When you complain about working so hard and you were sick and didn’t sleep? Yeah, add onto that; your child was barfing up snot, your child was screaming every hour, and you had to show unconditional love and restraint while the light of your eyes hit you in frustration from the terror of their dreams.
  3. Complaining about not having enough “fun money” is not only rude, but heartless. Take into consideration, the fact that most families with “special needs” children are on the brink of living on the streets. Between doctor visits, OT visits, Speech therapy visits, physical therapy visits, gas, special equipment for speech, sleep and such, the list goes on for our expenses that are not “fun” but essential. Does your child require a $200 piece of equipment with a $400 ap to help them talk? Will your child only sleep in a special made swing that hangs from the ceiling, or needs a trampoline to jump for sensory input? How about food costs because of the child’s dietary restrictions and needs?
  4. Using the words “he’s getting better” is like saying “great, your son is kind of acting normal and is easier to put up with now.” His “getting better” is hours and hours and hours of hard work and determination that have been used to “train” him to act like “normal” people do; because in our society, he can’t be himself. You see improvement; I see hours of pain and work put into changing my child in order to fit society’s need of him. Can you say the same about your child? Does your child go through training 20 hours a week with professionals (not to mention every waking minute at home) to become “normal?” Maybe if the world was more tolerant, my son could be himself and not be what you WANT him to be.
  5. Almost every waking moment of everyday is spent trying to hold on. We smile, because our children need us to. We use patience because our children need us to. Every waking (and sleeping) hour of the day, is spent trying to help our child. There is literally NEVER time to breathe. You say we look “better” or “I could never have patience like you do.” Guess what? You really could, if you had to, like we do. We don’t have patience like this because we were magically born with it. It has taken trial/error, pain/suffering, heartbreak/ revelations, and deep love for our child, to groom us into what you see. You see us bright and happy, but truthfully, we are ready to collapse at a moment’s notice. We don’t need your sympathy from this, but some compassion and understanding would be nice.
  6. YES! We do wish they would magically “get better.” But guess what? That will NEVER happen. Even when science figures out “what went wrong;” there will still be no miracle pill to “fix it.” This is literally our lives, the good, the bad, and the ugly. Wishing it was better is not going to help us, and you bringing it up is like slicing open an old wound and pouring ghost pepper sauce into it. Our babies were born different in the eyes of others. It’s something we live with everyday. Everyday we try and help them to “fit in” and “be normal” because we won’t be here forever. The thought of them living on without us, is the scariest thought imaginable because; who would care for them? Could they care for themselves? If we could “fix it”, we would only do it so that their lives would be easier, not ours. We are fine killing ourselves everyday for the sake of our babies. We just want them to have a happy life.
  7. We need you to appreciate our children’s “little” accomplishments just as much (if not more) than you need us to cheer on your child’s. Your child’s goal kick may seem more important than my child taking off his sock, but he probably practiced harder and longer than your child did, and he deserves as much recognition for his hard work.

These may seem heartless. These may seem like rantings of parents who “need attention.” It may even seem like I’m ungrateful. But at least I’m being honest. When you ignore a parent with a special needs child; you’re showing them exactly why they stay home. You are reminding them why they stay isolated. If you want to help; get to know the children better. Stay during the hard times and try and help. Offer to take your friend out for a few hours, just for a little distraction. It can go a long way.

We’ll give you all the help you need; except for the help you need.

dscn1989

I know I haven’t mentioned it before; but we’re a military family. My son was receiving ABA services (3 months after he was SUPPOSED to), just started speech again, but STILL has not started OT. I told the military that I was done, and I was moving him to a better location. They agreed with me. I told them a place that worked for us (they had services and I have a friend who lives there). Now, when you sign the paper saying you want an EFMP (exceptional family members program) move, you agree to not only go wherever they put you, but that your spouse’s job could change. We didn’t get the state we were hoping for. Instead, we are getting moved 3,000 miles, across the frickin country. Ok, well, maybe they have what we need? HELL no! Not only do all of the ABA service providers have a waiting list a mile long, but NONE of them, I repeat NONE of the 11 places I called, have a therapist who can speak in sign language (which is how little man communicates). Oh, and there is also a waiting list for the other services (speech and OT).

Sooo yeah. “We’re more than happy to send you to a place that has your needs met, just…we can’t send you to a place that has your needs. And guess what? You signed the papers so there ain’t nothin you can do about it! Do not pass go, do not get the services you need, and go directly back to square ONE!”

What makes me laugh (and cry) was the weighted stress of finding a place to live. We had a list of 20 places, which I was able to widdle down to 3, for varying reasons. Two of those places (come to find out) have been robbed within the last 12 days (no joke). The other one is a crappy 2 bedroom apartment (we have a family of 4 and it would be pretty cramped there).

This is, of course, of great concern. And here I was, worrying about how to move an Autistic toddler across the country in a CAR trip that would take no less than 10 days. Silly me. Instead, I have to worry about; how to move an Autistic toddler who doesn’t like car rides across the country, the fact that we will be homeless when we get there, and his needs as a “special needs” child will not be met. All because I made a fuss about not getting adequate services here. Well, that will teach me for opening my fat mouth to be an advocate for my child. I just learned a valuable lesson; “shut the H*ll up because if you complain, we will make your life a thousand times worse.” Thanks military, got it.