After the Meltdown

What do you do when the meltdown is over?

Do you cry from physical and emotional exhaustion? I do.

Do you take a minute to hate the autism? I do.

Do you worry that you’re doing something wrong, and it’s causing your child’s meltdowns? I do.

Do you wonder at how your child can go from screaming and doing everything he can to hurt you, to acting as though nothing happened? I do.

Do you doubt you have the inner strength it takes to do this again? I do.

Do you pray for your child and yourself? I do.

Do you keep on going despite your physical, spiritual, and emotional weariness? I do.

Do you need a good hug? I do.

Overcoming Autism Isolation

Children with autism have social impairments that cause a natural isolation from their peers, and this often causes us as parents to be isolated as well. I call it autism isolation. There are several behaviors that isolate autistic children from their peers. For one thing, autistic children have difficulty understanding nonverbal cues, like facial expressions, which people use to relate emotions. So, they will often react inappropriately in certain social situations. For example, my son laughs when someone is crying. He doesn’t realize that the person is sad, he just thinks they’re “acting funny”. We have to teach, or program if you will, autistic children to pick up on these cues that typical children naturally know. If I put myself in a child’s shoes, and I have a friend who laughs every time I’m sad, I wouldn’t really want to stick around. And that's how autism isolation begins.  

There are a lot of other things that separate autistic children from typical children. They’re different. They don't look different; they act different. They’re often described as being quirky, peculiar, and a little off. They don’t fit into that “normal” mold. They often do things that might not make sense to someone else. For example, my son likes to rub his head on people's chests (not a socially appropriate behavior). He gets away with it now, because he's young, but that's not going to fly when he's a grown man. Why does he do this? His brain has a hard time processing sensory experiences, like touch, sound, taste, smell, and sight. This is called Sensory Processing Disorder. Many children with autism have sensory processing issues. To some children, a touch can feel like pain, so they avoid it, but to others, they don't feel enough sensory experience, so their brain tells their body to find it. It's called Sensory Seeking. I have one son who is sensory seeking, and one who is sensory avoiding. These sensory processing issues can lead autistic children to do things like hand flapping, spinning in circles, and many other "odd" behaviors. Even though he has a legitimate excuse, my son's bizarre sensory seeking behavior definitely sets him apart from other children. And it causes me to have to make some awkward apologies to strangers.  

Many people on the autism spectrum have very limited interests. My child for example is obsessed with and can only talk about Transformers, or Lego products. Talking to him about his day at school can be like trying to extract information from a Russian spy. He doesn't like school, therefore he sees no need to talk about it and there's no way to make him. It can make it hard for kids with other interests to connect with him unless they are as obsessed with these things as he is.

To illustrate my point, I’ve drawn two circles. In one circle, you have a neurotypical child, or basically, your average kid. In the other circle, you have an autistic child. There is not always a complete separation of autistic behavior and typical behavior, so there is an overlap depending on where your child falls on the autism spectrum. The higher functioning your child is, the more the circles overlap, but the more severe your child’s behaviors are, the further they move apart. Your level of isolation as a parent will often match the level of the severity of your child’s autism, like these circles. If your child is high functioning, they will socialize more and be more accepted by neurotypical peers, which allows you to socialize more yourself. After all, you yourself are neurotypical, and crave that social interaction, just like everyone else.  

 

As a parent, especially a stay at home parent, you really have to make an effort to socialize your children and help them (and yourself) make friends. This is something that becomes a lot harder to do when your child has extreme behaviors. It’s hard to have a pleasant conversation with another mother while you’re constantly having to stop your child from stripping their clothes off or licking everything and everyone in sight. Not only is it difficult to help your child make friends, but you as a mom can find it hard to connect with mom’s who don’t deal with the same challenges you do. What do moms do when they get together? In my experience, they usually “talk shop” about raising kids. When your kids are in the autism circle, it’s difficult to relate because you have a completely different set of rules for parenting. So you sit and listen, and sometimes laugh to yourself and think, “Not my kid.”

It’s not that you don’t agree with the other mom’s, you’re just on a completely different plane than they are. And perhaps you’re even a little jealous. I know I am sometimes.

In an earlier post, I talked about how my son’s extreme behavior made my husband and I feel like captives in our own home, because every time we tried to go out somewhere (anywhere), our son would have a meltdown. It became so difficult, that we basically gave up and just stayed home. We isolated ourselves because we were tired of dealing with the meltdowns, but honestly, that’s not really what was best for our son, or for us. If you want your child to learn how to better cope with social situations, you’re going to have to let them practice, and you have to give them the tools they need to cope as well. It’s not easy, and it’s often a trial and error process, but it will be worth it in the end. Our family is STILL working on this.

There are things you as a parent can do to help break up the isolation that naturally comes from having a child on the spectrum.

1.     Join a support group. Common interests bring people together. Joining (or creating one if you have to) a support group for Moms with kids on the autism spectrum will help you feel less alone in the struggles, and even the joys of autism. Being able to “talk shop” and resources with other autism moms is invaluable.

2.     Set up playdates. I could do an entire post on the challenges I have with playdates, but despite how hard and awkward they can be, they’re good social practice for your child. To lessen the stress of playdates, you can start with family, if they live nearby. Family members usually understand your challenges and will happily adjust to meet your needs. If they don’t understand your challenges, EDUCATE THEM! This goes for playdates with non-family members too. If other people understand WHY you need them to come to your house, or to a specific park, or what strange behaviors they might expect to see, the more accepting they will be.

3.     Hang out with other adults WITHOUT the children. Socializing isn’t just important for your kids, it’s important for you too. The whole reason we socialize our children is so they can grow up and be well-adjusted “social” adults. Get a babysitter and invite some friends to go out for dinner. Enjoy socializing with other adults, and leave the autism at home for a few hours (don’t talk about it and try not to even think about it). This will feel strange at first, but trust me, it’s completely normal.

4.     Go at your own pace. Just because it’s important for your child to practice being social, does not mean you must be going somewhere or playing with someone every day. Some people are “social butterflies” who have a large circle of friends and like to stay busy, but others prefer to have just a few good friends. I fall into the few good friends category, and I have since before having children. So don’t push yourself (and your children) so far out of your comfort zone that you hate life. Do what works best for your family.

If you have a friend or family member with a child or children on the autism spectrum, there are also things you can do to help prevent autism isolation.

1. Take initiative. Be the one to suggest a playdate, or arrange a double date. Autism parents don't often put these things at the top of our priority list, but when someone else pushes us to do it, we're grateful for it. Often we don't want to impose on others or put them in an awkward situation, so we overcompensate by never making that first invitation.
2. Educate yourself. If you don't understand something about autism, ask. Chances are the autism mom will be more than happy to educate you. The better understanding you have, the more opportunity there is to create new friendships or enrich existing relationships. Don't be afraid of autism. Despite the odd behaviors, there is a lot of joy that comes from getting to know these amazing kids/people (this applies to befriending an adult with autism as well).
3.  Be flexible. As an autism mom, I automatically run through every worst case scenario in my mind for every social situation we encounter. I can usually predict what things are going to set my kids off, and I try to do what I can to avoid those things so we can all have a good experience. So, if I ask you to avoid doing something in particular, or even talking about certain subjects, try to be accommodating. (ie...The words Wal-mart, Target, and Toys R Us are prohibited in our house because it has the effect of saying, "let's go for a walk" to a dog. It gets everyone revved up.)
4. Be patient. This pretty much goes without saying. If you're friends with an autism mom, you're going to see some meltdowns. You will probably feel a bit awkward, because you'll want to help, but not know what you can do. But don't worry, as you become more familiar with the child, you will find ways you can help, and believe me, mom appreciates all the help she can get.

As much as everyone tries to say, “There’s no such thing as normal.” The truth is that a majority of society lives by certain social rules, and people who don’t follow those rules are outside the circle. Families affected by autism want to be a part of that normal circle. We just have to work harder to find that middle ground between the two circles.

 

Let it Go

I love a lot of things about North Carolina. The climate, the greenery, the people, and the slower pace of life are just a few of the things I love about it. The problem with North Carolina (for our family) is that it doesn't provide the kinds of support that our family needs, and our families are noticeably absent. For these reasons, we've decided to return to the Arizona desert (ugh). I have always hated the desert, but I'm setting my wants aside for my kids.

Autism is at the forefront of my mind ALL the time. It influences almost every decision I make, from what to make for dinner to where we should live. I have to be conscious of my children's needs in everything we do. Most families don't have to think twice about going out for a fun family dinner, or a picnic at the park, or driving by Wal-mart. They don't have to worry about their child melting down over some mysterious thing and causing damage to people or property. But we do. I love my boys more than my own life, which is why I'm willing to make whatever sacrifices I have to for their benefit, but I can't help but imagine sometimes how different our lives would be without the autism.

The world is becoming more aware of autism, because autism is filling the world. 1 in 68 children in the U.S. is on the autism spectrum! Almost everywhere I go, if I say, "My children are autistic." I will be answered with, "Oh, my so-and-so's son is autistic." It's everywhere. Yet, I have to move my family across the country to access better benefits for my autistic children. My husband has to find a different job and I will have to put on my helmet and shoulder pads and go toe to toe with a lot of bureaucratic nonsense just to get my children what they need.

Each of the last four years we have spent in North Carolina has gotten increasingly more difficult, with the worst of the worst in the past 6 months. We finally said, "Something's got to change, and since we can't change the autism, we'll have to change our circumstances and ourselves." We can't be selfish anymore. I wish we could stay in NC, but things have gotten progressively worse for us the harder we have tried to hang on to what we want. We are going to have to set aside our dreams and make new ones. When Braden was first diagnosed, we had to let go of our dreams for him and make new ones (like talking, and making a friend someday). We just didn't realize that we would have to let go of our dreams for ourselves too, but we are coming to find that out the hard way.

Gloria Steinem said, "Without leaps of the imagination, or dreaming, we lose the excitement of possibilities. Dreaming, after all, is a form of planning."

Everyone has dreams of what their life will be like and what they hope to accomplish. I would love to live in the countryside, build a homestead, and be paid to write. I used to dream about having a big family and lots of grandchildren, but those dreams changed, along with everything else in my life, when I found out my child had autism. You would think that I would give up on dreaming, but it's human nature to dream and imagine our world is better than it is. Without that, we would wither miserably and no progress would be made. So, I'm not going to give up on dreaming; I'm just going to have to find a new dream for now. Maybe someday we can pick up these dreams, dust them off, and try again, but for now, we are going to have to let it go.

The Ugly Side of Autism

I'm haphazardly parked across three spaces in an apartment complex. The driver's side door is ajar, as well as the door behind it, along with the back hatch of my highlander propped open. There is a child's screaming ringing through the morning air as residents out walking their dogs before they head off to work steal glances in our direction. Someone walking behind the car would see a short, sweaty, crying, red-faced woman struggling with a boy who almost matches her in height, and who is trying desperately to hit, bite, scratch, and kick every inch of her.

My face is stinging and my eyes hurt from being hit in the face so many times. I stop to think why boxers do what they do. If you've ever been slapped hard, you know it hurts, and I'm no wimp when it comes to pain, but yeah, I'm in pain. I'm tired, because I've been struggling for about forty-minutes; my arms are burning, and I won't know how many bruises I'll have on my legs until later. I'm just trying to hold out until my husband can come and help me. I only have one mission right now. Keep Jackson safe.

The crying coming from the car is my youngest son, who has been hit and kicked in the face by his older brother before I could intervene. I can't comfort him and tell him it will be okay, because I have to restrain his brother behind the car to keep him from hurting him again.

A woman across the street comes out to her balcony (probably because of the noise). She stands watching us for some time, then yells out, "Do you need help?"

I have no idea how to answer that question. It's pretty obvious that I need help, but there just isn't much anyone else can do for me at the moment. Through my tears, I try to yell, "I'm fine." But it rings so false in my ears and feels so ridiculous to say, when I'm in the process of being pummeled; it only makes me cry more. The situation seems completely hopeless and it crushes more than my face, it breaks down my spirit. I can't take the things he says to me personally, but hearing your own child tell you he wants you out of his life forever…always hurts.

My husband finally shows up after having had to walk out of a meeting at work. He takes Braden home in his car and I can finally check on Jackson and tell him how sorry I am that I couldn't protect him. His face is a little red, but he seems okay other than being tired from crying and probably extremely frightened. I know I can't take him home, so I try to get myself together, close all the doors to the car, and take him to school. While driving Jackson to school, I keep mumbling, "I just need to make it through today. Tomorrow will be better." I'm trying desperately to convince myself. We're an hour late. His teacher takes one look at me when she comes to the office to get Jackson and says, "Are you alright?"

No. Today I'm not. Every day with a child who has autism is different. We have good days and then we have days like this. Days when we feel completely defeated physically, emotionally, mentally, and spiritually. These days when we're tired of fighting, tired of trying to be positive and be strong. We want to throw our arms up and say, "I'm done! I give up! I'm not strong enough to do this!" But we don't do that, because we know we will wake up tomorrow and our children will still have autism; they will still be our children, and we will still love them. So, we go to bed that night, pray that tomorrow will be better, and get up and do it all again—whether it gets better or not.

Some people might wonder why I would tell this story, when it's clearly not a pretty one. Why should I hide the ugly side of autism?  We tend to try and hide the ugly side of everything as a society. We want perfection and the scene I've just described was anything but perfect. We airbrush blemishes from models to create the appearance of perfection, when in truth, perfection doesn't exist. There is an ugly side to everything. The backside of the most beautiful paintings in the world are just plain canvas. The beauty is in what we do with the ugliness. I'm showing you the ugly side of autism (the backside of the canvas) so you can walk away with a better understanding of every aspect of this disorder.   


When I started this blog, I said, it wouldn't be all sunshine and roses because life with two autistic children isn't all sunshine and roses. The truth is there are ugly days, a lot of them. This blog is about what it really takes to be the parent of two autistic children. It takes the physical strength and endurance of a boxer (you have to take a beating sometimes). It takes emotional resolve and the ability to accept your life as it is. You have to extend yourself mentally, learning how to deal with behaviors and doing research to try to come up with solutions to modify those behaviors. It takes spiritual strength like I never believed possible. I've been tested to my limits and there have been times I felt I would break. But I made it through this bad day, and many, many others, and I go to bed every night and pray for a better day tomorrow.

Back to School: The Most Wonderful Time of the Year!

I know there are some parents out there who are sad to see their kids go back to school at the end of the summer—I'm not one of them. When my kids are home together, they have to be constantly supervised, and it is extremely tiring. And when I say constantly, I'm not exaggerating. Even if they aren't attacking one another, one or both of them is usually doing something that will either get them hurt, or destroy our house. By the time "back to school" rolls around, I'm dancing through the aisles at Target as I shop for school supplies singing that Christmas song "It's the most wonderful time of the year". (very much like this) I count down the days until we can get back into a regular routine, because summer and track out are anything but routine. Kids with autism thrive on routine and predictability, so school (as long as they are in a good class) can be one of the best things for them.

This year, I will have BOTH of my boys in school all day. I'm both scared and excited. I'm scared because Jackson is so little, I just can't picture my baby going to school yet, but I'm excited for him to begin learning and hopefully getting some of the help he badly needs. He still doesn't speak, but he is picking up on some sign language, so I have hope that we will be able to find SOME way to communicate with him, even if he is non-verbal.

What will I do with myself between the hours of 9:00 - 2:30 you might wonder? I know exactly what I want to do—WRITE! I can finally focus on my writing career and have time to write (not in the middle of the night, like I do now). I am working furiously on a new book, and I have ten other writing projects in line after that, not to mention this blog. I know I don't have a cult of followers who read my blog, but I keep it because it's a record for me to look back on. Who knows, maybe one day I will write a book about Autism (the thought has definitely crossed my mind).

Having the boys in school will also give me time to focus on my health. Constant stress eventually leads the mind and body to break down. I've definitely hit that point. I have quite a few stress related or stress induced health issues that I struggle with every day. (Learn more about how stress can cause burn-out here) I'm not going to spill all of my medical history to the world, but I would like to reach out to other moms out there who deal with the stress of having a child with autism and emphasize the importance of STRESS RELIEF!! Do whatever it takes to give yourself a break once in a while. The money you pay to a baby-sitter, or mother's helper, pales in comparison to the money you spend going to ten different doctors, loads of prescription drugs (with side effects), all trying to undo the damage of STRESS.

Hang in there (I know that sound like a cat poster…ha ha ha…we love the Lego Movie at our house, so if you don't get that joke, you probably don't have boys). Don't break under the pressure of autism. It's a lifelong challenge and it can be truly daunting, but I know you love your child, like I love mine. As a mother, it's second nature to give, give, give, but it's really important to take some time for yourself (and your husband too if you have one, if you don't, there's even MORE reason for you to get a break!)

Am I a horrible mother because I'm not crying when I drop my kids off at school? No. No I'm not.


 

Autism and Religion

I am a religious person. I haven't always been this way, though. I went through my own process of discovery before choosing to become a member of The Church of Jesus Christ of Latter Day Saints. Being a member of this church has blessed my life in more ways than I could list. I always dreamed of sharing that happiness with my children. I wanted to see my sons go on missions, and then marry in the temple. I had hoped to have a daughter to pass on my heirlooms to, and see my children have children of their own. But Heavenly Father had a different plan in mind for me. I was always a bit of a peculiar and imaginative child; my mother always said I danced to the beat of my own drum. Perhaps I wasn't meant to live an ordinary life, and so far, it has been the farthest thing from what I had dreamed, and most certainly not what I would call ordinary.    

Autism has so many facets, that it is impossible for me to encompass every issue regarding autism and religion, but I would like to write about the few aspects that affect our family personally. Our son, Braden, sees things in black and white. He is very literal and has difficulty grasping abstract concepts that can't be seen or shown to him. He does not understand what the Holy Ghost is (or what a ghost is period), nor does he really understand who Jesus and Heavenly Father are, and why Jesus died for us. If these things could be explained with Lego sets and instructions (Braden LOVES "reading" Lego instructions, no words, just pictures), we'd be good, but they really can't, so he doesn't understand why we want him to put on uncomfortable clothes and sit quietly for three hours every week, when he can't even sit still through a meal.

Jackson is a sweet, quiet, and mostly content little guy, but he gets very anxious when surrounded by a lot of people. People he doesn't know are unpredictable to him, especially other children. He really does not know what to make of other kids, so he will hide or ignore them completely. He does not speak, and cannot ask for help or answer questions. His developmental age is closer to 18 months-old rather than three, so his grasp on religious concepts, really isn't known, or developed yet.

As it stands now, neither of our children understands our core belief system. The very system which affects every decision we make. This is pretty disheartening, but Jeremy and I still have our faith, though. We still believe in gospel of Jesus Christ. But attending church on a weekly basis is nearly impossible for us. Just as it's difficult to take our children to birthday parties, Christmas gatherings, trick-or-treating, to the doctor, to the mall, or to the store...etc. Nothing is easy when you have two children on the spectrum, and even if so-and-so is miraculously able to get their autistic children to attend church, they aren't us. All children with autism are different and so are their parents. Maybe we're doing it wrong, but we are doing our best.

So, we've become captives in our own home because going anywhere only causes chaos and frustration for everyone. Every once in a while, we try to get out of the house, and do something "fun" just to see how it goes, but it usually ends up with Jeremy dragging a kicking screaming Braden out of a restaurant or store, and waiting in the car while I pay the bill or check out. Then we get to the car. If Braden hasn't calmed down, Jeremy ends up sitting in the back seat between Jackson's car seat and Braden, so Jackson doesn't become the victim of a flying limb. By the time we get home, we're rundown and ragged, and Jeremy's butt is numb from sitting on a seat that was not meant for a grown-up. So, we whisk the kids into the house before they can disturb the entire neighborhood, and we swear to ourselves we will never leave the house again.

We have a wonderful ward (area of members that attend church with us). They have been very supportive and have offered to help us in many ways, and without them and my faith, I would have had a nervous breakdown long ago. They pray for our family and care about what happens to us. That Christ-like attitude is part of what brought me into the church. I believe that Heavenly Father gives us challenges to overcome in life. (See my last post) And I hope and pray that someday, we will be able to attend church as a family, but until then, we will keep trying, and I pray for strength, patience, and friendships that will help get me through these times. Living far away from our families has definitely left a gaping hole in our life, and having good friends helps to bridge that gap. My life may not be what I planned it to be, but it's my life and I'm going to live it one day at a time. 

Contents Under Pressure

My life is a marathon, I started out running, and someone came along, handed me a large rock, and said, "Okay, now you have to carry this for the rest of the race." So, I kept on going, my arm would get tired, and I would switch the rock to the other arm, eventually, I felt both arms were strong enough to keep carrying the weight. Then, they came to me, handed me a rock twice the size of the first, and said, "Alright, now you have to carry this rock for the rest of the race." The rock was twice as heavy as the first and I had to cradle it under my arm as I ran, but I kept going. Then they came to me with a small boulder and said, "Okay, now this boulder is quite a bit heavier than the last. We will provide you with a running partner who will help you. You can carry the weight together, and it will make you both stronger if you stick together. You can do this!" They mounted it on my shoulders, and I was almost stopped dead in my tracks. It was so heavy, it really slowed me down, but I kept going, my partner and I, only at a slower pace for a while. After some time, I felt my legs get stronger, my back could bear the weight, and I picked up my pace. We were doing pretty well. Then they came to us and said, "Sorry to do this to you, but you will have to carry a new boulder, but you've gotten so strong, we know you can do it! We will be right here beside you, like always, to help you back up if you fall, and of course, we will keep cheering you on." Then they rolled an enormous boulder (the size of a man) out and mounted it on our shoulders. The weight was crushing, and I was sure it would finish me. How could I run the rest of the race with this thing on my back? But they said I could do it, so I was determined to keep going, even if it was at a snail's pace. We had gone barely a few steps when they stopped us and said, "Wait! We forgot to add something." And they strapped another boulder of the same size on top of the other one! We both fell to the ground under the weight. They helped us back up to our feet and said, "Emily, Jeremy look at how far you have come. You began with just one rock, and you've never given up. If you can carry this weight for the rest of the race, you will become a true Titan, and nothing will be able to stop you from claiming your prize. Just keep on going!" And so, here we are.

The boulders are not our children; the boulders are autism. The weight is more than we ever imagined it would be. Some days, we take a few steps forward, but we fall down a lot, and need a lot of help. These recent days have been some of the harder ones, but we both know they will pass and even if we take only one step each day, it's something. Even if we fall, as long as we get back up, we are still going. Our "coaches" (Our Heavenly Father, our Savior, Jesus Christ, and our families) watch over us, encourage us, and sometimes help us carry the weight. We don't know when the Marathon will end and there are times (like now) where one of us (Jeremy) has to take a little extra weight while the other has an injured foot. (That would be me, no joke. I have a heel spur, among other health issues that make doing my part, incredibly difficult, if not impossible most days.) Someday Jeremy and I will finish this race, and our prize is eternal glory. We will throw those boulders off our backs and stand tall and strong. Who knows, before the end of the race, maybe we will have enough strength to help someone else bear the weight too.

My favorite band is Safetysuit. They come from TN, and I found them by accident really, but their music is very good, and they have a song called "These Times" which I listen to on hard days. (Watch the video. It will give you goose bumps.) They remind me that times get hard; life is hard for everyone, but time passes and the hard times with it.

Autism and Medication

The topic of medications and autism is almost as controversial as the topic of vaccines (not going there right now). We know that autism affects every child differently. I have two children with it and they have very few similarities in how their autism presents itself. Braden in particular is going to be my subject today, because he has been on medication for about four years now. There are a lot of different opinions about putting autistic kids on medication, because there is no drug out there that “treats” autism. There are drugs that help tone down some of the more disruptive symptoms that keep our kids from being able to function and get the most out of their therapies or school.

I am not against medications, but I was very hesitant when deciding to put Braden on medication because I did not want to lose all the wonderful things we loved about Braden. I was worried that putting him on medication would turn him into a “zombie” and there is always the judgments that come from other parents who are against medicating. I don’t normally care what others think of me, but sometimes it seems as if everyone thinks they know what is right for my child. I’m aware that most people who offer “advice” are only trying to help me, but they don’t know Braden like I do, and they are not the ones who live with him every day. So, yes, I did not want to deal with the inevitable criticism from others, but I had to think about what was best for Braden, and for our family.

Braden was four-years-old, and I was pregnant with Jackson, when Braden began to display aggressive behavior toward others. When he was first diagnosed with autism at eighteen-months-old, he was self-injurious, but he had never attempted to hurt anyone else. With me being pregnant, I was very worried about his behavior and for the safety of the baby, so I took Braden to see a Developmental Pediatrician who specializes in autism. He recommended a drug, which I believe is usually prescribed for high blood pressure, but he reassured me that Braden’s blood pressure would be monitored closely and we would hopefully see a decline in the aggression. I reluctantly agreed to try a low dose of the drug.

It’s been four years, and we have had to adjust Braden’s medication regimen several times, which is no fun for anyone. We never make medication adjustments lightly either. We have tried anti-depressants (without success) and we have even tried anti-psychotics, which required some serious thought and reflection, because these drugs can have some serious side effects. Recently, we decided that despite Braden’s worsening aggression, we needed to take him off of all medications to gauge his baseline behavior and see what he really needs to be on, because the tricky thing about a growing child taking medicine is that changes are inevitable as they grow and go through different phases. We know we are in for a rough summer, and it’s already been no picnic, but I believe it’s necessary, and what is best for Braden right now.

My point to this post is that we are the parents and we know our children. Do we always have the right answer? No. I am frequently at a loss as to how to respond to some of my kids’ behavior, but I wouldn’t trust this job to anyone else. I consult with a doctor that I trust, and I take his opinions under advisement, but ultimately, Jeremy and I are the ones making the decisions and we have to live with them. We pray, we research the drugs that are being recommended, and we decide if it will be beneficial to Braden. Some medications we have tried have been complete train wrecks, and have made everyone in our house miserable for weeks, but we live and we learn. What we are doing now, is what we think is best. Braden will probably have to go back on the meds eventually, but right now, this is what we feel is right. Every mother or father out there with a special needs child, or a child with ANY illness for that matter, has to decide at some point about medications. You are the parent, you know your child best, and even if you aren’t a doctor, you are the most qualified person to make the decision about it. Do your research, and get your information from a reliable source, because just about anything you read on the internet needs to be taken with a grain of salt. What works for one child may not work for another. Some natural remedies work, some diet changes work, and sometimes pharmaceuticals are the best route, but whatever your choice, don’t let other’s make you doubt yourself. You have been chosen to be the parent of a special child; you are a warrior, fighting a battle that no one but you can fight, and no one but you can fully understand.

When it rains, it's Usually Raining on Everyone.

You know that saying 'When it rains, it pours.' Well, many of us tend to think  we are the only people getting wet. We are too focused on our own hair getting wet and we would use our own children to shield our phones from getting wet (tell me I'm wrong). What am I getting at with this little analogy? I haven't done a blog post in quite a while because I've been chronically ill and not even well enough to type up a post. This mystery illness has plagued me for months (or longer) and I've driven myself mad trying to figure out why I never feel well (currently still a mystery). Any mom knows that being a mom and being sick stinks—big time. We don't get sick days, and we certainly don't get FMLA benefits. Nope, we just make the best of it. I'm blessed to have an amazing husband who has picked up my slack—and I have left tons of slack—he's tired and works full-time. He deserves better. He deserves a vacation, but as life goes, we don't always get what we deserve. But I am so thankful for him, for his selflessness, and his love that I can't imagine life without him. He's using himself to shield me from the rain (as much as he can). That, my friends, is a good husband.

I went to church yesterday for the first time in a long time. There are many reasons why I don't make it to church every Sunday but I haven't stopped believing in Christ or his gospel. Saturday was horrible; I could not wait for the day to end horrible. My wonderful husband told me Saturday night that he would watch the kids if I felt well enough to go to church the next morning. Thankfully, I felt well enough to go on Sunday morning. I got dressed and went to church. I sat alone in that chapel and I cried through the entire meeting. I went to class and made it through most of the class being able to control my emotions. I was crying for many reasons, some were happy tears of being able to focus on Christ and talk to my Father in Heaven as I partook of his sacrament. Other tears were sad tears because I wished my family were with me and I felt the loss of having the experiences I had growing up and sitting in the chapel with my family on Sundays, (my boys won't go into the chapel—ever). I was overwhelmed with gratitude that Jeremy was at home selflessly serving me (again), so that I could be there. After class, I talked with a friend, who gave me some news of a drenching, torrential storm of a trial she is going through. I felt like such a dreadful friend because I had been so focused on keeping myself dry that I had not thought it strange that I hadn't heard from her, nor did I check in on her. She has always been so kind to me and been the first in line to offer me help. This woman is the salt of the earth. She is a shining example for me, I have no doubt she is for others as well, and I know she will be even more of a shining example of Christ's love in the future because of this trial she's been asked to endure. I’m still sick, but she made me realize I'm not the only one being poured on.  

Let's all help keep each other as dry as we can and truly enjoy the sun when it's shining.

What's FUN about Autism?

We have been faced with quite a few challenges in our life and it just seems as if they keep on coming. But, I don't want to focus this post on the challenges; I want to just go over a few of the special joys that our family gets to experience because our children are autistic.

·         We have been blessed with the opportunity to learn about this disorder and to teach others about it and help spread awareness. The month of April is Autism Awareness month, (FYI) so you might be hearing more from us next month!

 

·         Our family has grown closer. Not just our little family, but there is something so special about these boys, that EVERYONE in our family (including ALL of our extended family) has come together to love them (you just can't help but love them).

 

·         We have become part of a community (I would go so far as to call it a culture) of people who are experiencing the same up's and down's that we do. Every child with Autism is different, but there are quite a few behaviors that we see in a lot of our children, to different degrees, but we understand each other and we know we aren't alone in our struggles. The CDC just released the newest statistics for Autism and 1 in 68 children in the US is affected by ASD (Autism Spectrum Disorder). Those numbers are staggering! But, they are going up because we're more aware and we are catching those cases that would have gone undiagnosed. That's a GOOD thing. Everyone has opinions on whether ASD will ever be able to be cured. Personally, I don't believe it can. I believe the best thing that research can do is focus on treatment options, and how to help the families affected to cope with the challenges. This includes awareness and COMPASSION from society in general.

 

·         Every person on earth is an individual. Each with our own unique personality, so what makes a child with autism UNIQUE when everyone is in essence unique. The amazing thing about our children is in the way they view the world and how they experience life. Because of their ASD, they don't experience a sunny day the same way a neurotypical person would. They see the details we don't, they feel things we wouldn't and they come up with solutions to problems in a unique way. Before Autism was well known, many people who were believed to be eccentrics, but geniuses, were probably autistic. (Albert Einstein, Nicola Tesla, Mozart, Issac Newton, Michalangelo) These special people benefit our world in ways we can't imagine; we just have to LET them!

 

·         Our boys have a special sense of humor because of the way they see things or interpret them (I'm still trying to figure it out), but they are FUNNY! Not a day goes by that Jeremy or I don't catch ONE of the boys doing something funny (even if the other one is having a bad day). Braden can talk and he can tell us jokes and he says some of the funniest things sometimes that we're amazed by him and his point of view. Jackson can't talk, but he is an imitator and he will mimic his favorite movie characters. Both he and Braden LOVE music and especially movie credits with music. Sometimes I think they enjoy the credits as much or more than they enjoy the movie. Both of them will start dancing around and smiling like crazy when the credits to their favorite movies come on. It really is a sight to see and Jeremy and I have tried to video tape them, but they have some kind of instinct that tells them there is a camera pointed at them, at which point they immediately stop what they're doing. (except Braden, he loves to be videotaped and is quite a camera hog!)

 

·         I'm going to take just a minute to brag about how darn CUTE my boys are! It has nothing to do with their autism, but I swear, when you look at them, you can just see that there is something special inside of them. They both have beautiful blue eyes and Jackson's eyes are so big and blue that we literally can't go out in public without someone saying something about his beautiful eyes. They do all the talking for him.

And now, for the funnest parts! I've compiled a small sample of some of the funny things Jeremy or I have posted on facebook when Braden has said something we just had to share with the world. Unfortunately, Jackson's funny stuff would all have to be pictures because he doesn't talk, but I'll post a couple, though there are MANY of him and his funny ways! The point of this post is that Autism isn't ALL about the challenges, it's about the blessings too.

BRADEN:

So, Braden likes to walk around the house and talk to himself. He doesn't care who's listening, and he does both sides of the conversation and even does voice imitations. Sometimes we hear him repeating things he's heard in tv or movies and sometimes he "replays" things that happen at school (doing perfect imitations of his teachers), but apparently he will also pretend things. He was just walking around talking and I hear, "Hi! Welcome to Chinese Noodles! What would you like to order?" to which he responds, (in a different tone of voice) "I would like three orders of Chinese noodles please!" If you can't tell, noodles are his favorite when we get Chinese.

Braden: Mom, are we going somewhere for dinner?

Me: No.

Braden: But, I'm keeping my socks on, so we have to go out somewhere for dinner, because I have my socks on.

Braden is standing at the window yelling hysterically at the sun to go away, because he doesn't want the snow to melt.

We are drive to a local shopping center and Braden says out of the blue "I want to go to Bojinglebells". For those not from the East what he meant was Bojangles

We're driving in the car and Braden yells "Oh my gosh!" so we say "what?" and Braden says "there are lots of trees in north Carolina!" we had to laugh out loud at that one. We've lived here for three years and he's just now noticing we are surrounded by trees.

Driving by a cotton field; Braden calls it a "smarshmallow" field

Braden is really into Harry potter right now. What's funny: he says Harry's name with a British accent. (a pretty good one too!)

Braden: I have a loose tooth!
Jeremy: wiggle it.
Braden: shakes his head back and forth.

Just drove by the Verizon store and Braden yells "check mark phones!"

Braden's playing x-box the other day and Daddy says: "What are you doing Braden?" and Braden answers: "Wasting my time." CLASSIC!

Braden made up his own name for one of his transformers: instead of megatron it's MEGATROUBLE! I think that should be his new nickname!

Jeremy just tried waking Braden up from a nap before he was ready to get up. Braden's response: I'm out of control, so just get out of my way!

Mom: Braden what season is Christmas in?
Braden: I don't know.
Mom: When is Christmas?
Braden: Tuesday the 18th (no hesitation)

We were in the car and Braden says: "Mom, when I grow up and live in my own house with a cat, I'm going to have to go to the car store and buy a truck."

JACKSON:

Jackson is serious about cupcakes

 



 

Jackson loves shopping

 

 

Jackson's solution to holding his bottle when his arms get tired

 

 

Jackson ALWAYS likes sticking his tongue out

 

 

Jackson just being cute

 

 

Jackson likes to look at the world upside-down. Braden (who likes hanging around the house in his underwear) thought he would give it a try

 

 

Jackson loves playing with glasses (and breaking them) He also loves stealing any food Braden leaves within his reach, chocolate pudding for example.

 

 

I love kids in pajamas and I have tons of pictures of the boys in christmas jammies, halloween jammies, any kind of jammies will do, they're just cute when they're together!

 

 

My two sweet boys in their Sunday best

 

 

Braden rubs Jackson's head the way I rub their heads when they cuddle with me. This is probably one of my favorite pictures of them together, even though you can't see their faces.

 

 

Look at these two boys and I DARE you to tell me there isn't something amazing about them! You can see it in their eyes, they have special souls and Jeremy and I have been blessed with the responsibility of seeing that they are given the opportunity to share their uniqueness with the world.

Who Moved My Cheese?

I've said before in my posts that I struggle with Anxiety disorder. Well, let me tell you what happens when someone like me becomes stressed or over anxious. Many people have heard of panic attacks and many probably have seen a movie (or cartoon) where someone is panicking and someone else shoves a paper bag over their mouth for them to breathe into. They make it almost comical, but to those of us who actually suffer from these attacks it's no joke. It's humiliating and makes us feel weak and out of control. You are in your body, but you can't control what it's doing and a person telling you to "calm down" doesn't do a darn thing. I don't blame them though, they just don't understand what you're experiencing and they want to help.

 A week or two ago (I'm not sure, time is a blur when you're stressed) I was coming down with the flu and I had a fever and some unexplainable back pain. That's how it started. I didn't CHOOSE to have a panic attack, I just did. I ended up spending the day in the ER, trying to get control of my body. Let me give you a rundown of what it feels like. You start to feel like you can't breathe so you try to take deep breaths and you breathe faster and faster, but you quickly realize, you're having a panic attack, but by now, you're on the panic attack train and no amount of telling yourself to "calm down" helps. You have to ride that train until it stops and even though you know what's happening and you want to stop it, you can't seem to get it under control. You're not at the wheel anymore; you're just a passenger. You feel like you can't breathe, so your breaths become short and fast. Your limbs begin to go numb and tingle as if they're asleep and it's painful. Then your muscles begin to cramp, all of them, not just a few of them, all 642 of the muscles in your body go into overdrive (including your mouth, so doctors asking you questions at this point is just plain dumb). Imagine getting a Charlie horse all over your whole body…it's painful and makes you panic even more. Even with the help of drugs, it was difficult and when it was over, I was embarrassed and felt like an idiot because I felt that I should be able to control my own body. It gave me some good insight into how my kids must feel on a daily basis.

People with Autism thrive on routines, predictability and stability. Who wouldn't? We live in a world where change is inevitable though, and for people with autism (or mothers with anxiety disorder) change is the scariest thing on earth. If you're wondering about the title of this blog post, it's the title of a book about how to deal with life's inevitable changes. It's easier for some people than others. My husband for example, seems to handle it without a problem. He doesn't understand why I get so upset when one of my favorite restaurants changes their menu or the recipe of one of my "go-to" dishes. I think my own issues gives me the ability to fully understand what is going to upset my kids, even if there is nothing I can do to stop the change from happening, at least I can understand their feelings about it.

We have a lot of change happening in our life this coming year. We'll be moving a few times, we've been in the process of packing things up, selling our home and purging (this is serious stuff for my kids), and it's exhibited in misbehavior, which is no fun for us as parents. But these changes are ones that we are hoping will ultimately lead to that wonderful, bliss of routine, predictability and stability in the long run. When we finally get to that point, I have no doubt that we will enjoy life much more. It won't be challenge free, but hopefully better. But I know there is always someone (God or mankind) who's going to "move our cheese" at some point, so I just have to do my best to roll with it, like my awesome husband does. He's been an amazing example to me and I wish that I were more like him in many ways, but I also know that his life would just be WAY too BORING without my eccentricities. J And we both know that our lives wouldn't be right without our boys (just the way they are). There is a saying that is very well known in the autism community and it's even becoming known out there in the world of "normal" people. Our boys have autism, that makes them DIFFERENT, NOT LESS.

 

When Life Hands You Lemons…Stick ‘Em in Your Bra!

I love to go on pinterest, browse through all the DIY projects and see how people can make benches out of doors and old beds or lampshades out of toilet paper rolls. When people get creative they can make something beautiful, fun or at the very least, interesting out of ANYTHING. Usually it’s something that was rundown, beat up, or thrown out. All they had to do was give it a little love, creativity, elbow grease and walla! It goes from crap to craft! Even the ‘pinstrocities’ are awesome because even though they’re epic fails, they’re entertaining and you learn from them. Everyone works in different mediums whether it’s stone, clay, broken glass, red solo cups, pumpkins, license plates, letters on a page and even toilet paper rolls. There is someone out there who can take these things and makes them into something beautiful or interesting. If only life were so simple, right.

Life is full of ugliness, challenges and seemingly useless toilet paper rolls that we don’t know what to do with them; there’s no avoiding it, no matter who you are. Rich, poor, famous and obscure, no one can avoid it. Sometimes these things in our lives are within ourselves and sometimes it’s outside of our control, but still affects us. I’ve learned in my own life to take that challenge and by putting a little love, creativity and elbow grease into it, it can become something beautiful (or at least less ugly). Raw, natural diamonds are not the pretty polished stones sticking out of the mine wall you recall from Snow White, but you get a skilled jeweler working on it and they know exactly how to make that stone look amazing. Even though the stone still has flaws within it, the jeweler has been able to give that particular stone just the right cut to bring out its best qualities to make the stone sparkle and shine. Everything in our world goes through a refining process, whether it’s done by man or by nature, the fact is, we are all being crafted into something different than we were to start out with.

You know that saying “When life hands you lemons, make lemonade.” Well, I always loved the Crabby Road cartoon where Maxine says, “When life hands you lemons…tuck ‘em in your bra…couldn’t hurt.” I get what they mean by that saying but you have to have SUGAR and water to make lemonade otherwise that lemonade would be super gross. We are the ones that have to provide the sugar, it can be hard to find sometimes when you’re buried in lemons but if you look hard enough, you can find it. For me:

J  It’s hanging out with my oddball family that makes me laugh (It’s a Davis thing; most people don’t get it but that’s okay.)

J  Watching Psych

J  When my boys have sweet moments with me

J  A date with my husband

J  Reading – scriptures, classic literature, fiction, non-fiction…any good book.

J  Dr. Pepper with Sonic ice.

J  A trip to the bookstore…alone…for as long as I want

J  Writing a great scene for my book or a great blog post

J  Playing with my boys and making them giggle

J  Time to take a nap or a shower long enough to get my legs shaved

J  A good friend who checks in on me out of the blue (and doesn’t mind that I’m still in my pajamas at 3:00pm)

J  Someone who will just listen to me ramble (I get very little adult interaction, so I go a little nuts when I get around grown-ups.)

J  Most of all, the sweetest sugar in my life is my knowledge that my Heavenly Father is not letting lemons rain down on me for nothing.

He refines the earth in the same way he refines us and for the same reasons, to make us into something more beautiful (if we let him). Beaches are sandy because they endure the constant barrage of the ocean waves; the amazing Grand Canyon was cut by a patient river and we are not much different. He sees to it that we get the most out of our short life on this beautiful earth he’s created. He knows what he’s doing and we have to trust him. If everything were easy, there would never be any sense of accomplishment. Hiking to the top of a mountain peak gives you a much more rewarding view (and better perspective) than walking up a small hill. Sometimes the most rewarding things in life are the things we’ve had to work the hardest for and sacrifice the most of ourselves for.

Lately, I’ve been given buckets of lemons and toilet paper rolls. I keep thinking to myself, I can’t handle ONE more thing but that’s about the time I get a phone call with just that. So if I’m not picking up my phone when you call, now you know why. I keep trying to see what beautiful thing I can make out of all these lemons and toilet paper rolls because what else am I going to do with them? I’ve spent a lot of my time looking for more sugar to make this lemonade a little sweeter. The funny thing is, I think I’ve figured it out while writing this blog post. I have a lot more sugar for my lemonade than I thought I did, so raise a glass with me and toast to life’s challenges; may they continue making me into something better than I was before!

And now, for the toilet paper rolls…J

 

 

How to Pick a Husband

There are only a few things that I’m good at. I can paint your toes with pretty designs, I’m a good massage therapist and I guess you could say I’m a decent writer, though, that is a craft that I have yet to hone and get better at. But, the best thing I’ve ever done in my life is picking the right husband. Sure, I could have married any decent guy I guess, but to be honest, I think that I found the best of the best…the Top Gun of husbands. Here is what makes him the best:

He is an amazing cook and he actually does make dinner several nights of the week. I can follow a recipe, but he’s better. When we were first married, I didn’t know how to cook anything but steamed chicken and rice-a-roni and I wasn’t even great at that. I’ve learned to do better over the past 15 years of our marriage, but he can grill some of the best steaks I’ve ever eaten, he can make a delicious prime rib roast, he makes Haitian food, Indian food and lots of other yummy stuff that requires skill in the kitchen.

He cleans. He does dishes, laundry, cleans toilets, mows the lawn, washes and cleans the cars; helps clean the children (He should get an award for that one alone right there). I’m sure there are other guys out there who clean, but in my experience, I got the BEST one!

He is the most patient person I have EVER met. I am one of the most impatient people and honestly, I don’t know how he’s survived the past fifteen years with ME. He puts up with my quirks and my odd sense of humor (authors are their own breed of weird, we just live somewhere else sometimes, and we keep odd hours). He’s taught me a thing or two about being patient. He keeps a level head in just about any situation and he helps me to keep my anxiety in check. I was a bit of a wild one when he and I met, but his mellow temperament has had the effect of taming me (a little) over the years.

He is the best daddy and he’s proud of his boys. Our boys can be so rambunctious and crazy sometimes and it scares me to death sometimes but Jeremy gets right in there, rolls around on the floor with them, and plays with them…and they absolutely love him. Especially Braden, he is constantly asking me where daddy is. The first things out of his mouth in the morning are “Where’s Daddy?” and when I have to tell him daddy is at work, he gets upset. The first thing out of his mouth when he gets home from school is “Where’s Daddy?” and when I tell him that daddy has to sleep because he worked all night, he gets upset. Braden LOVES his daddy and Jeremy LOVES his boys. Jackson is a little bit more of a mommy’s boy (but I love it) but he has so much fun playing with his daddy. Jeremy’s level of patience when it comes to having two boys with autism makes him the best of the best father’s, and a wife could NOT ask for more! And, I don’t have to ask, he gives so much of himself, I’ve never met anyone more selfless. Not to mention he’s always been willing to change more than his fair share of diapers!

He is just a GOOD, GOOD, GOOD man. He works hard at work, and at home; there is no way for me to explain how much that means to me. He’s strong spiritually, and he helps inspire me. He’s never touched a drop of alcohol or tobacco in his life and obviously stayed clean of drugs. That means a lot more to me than even he may realize.

He’s a team player. I don’t know how everyone else’s marriage works, but Jeremy and I approach every challenge we have faced in our fifteen years of marriage as a TEAM. There is no “I” in team, but if you rearrange the letters, you can spell mate, tame and meat (he’s a hunk! Wink wink). He and I do everything from grocery shopping to bedtime routines together.

Fifteen years ago today, I married him and I could go on all day listing all the reasons he’s the BEST HUSBAND in the history of EVER, but I think you get my point. I may not be great at many things, but I tell you what, I know how to pick a darn good husband. 

 

Will Work for Giggles

The past few years have been challenging ones for our family, but especially the past six months. I haven’t been doing as many posts recently because as much as I want to keep things on this blog real, I don’t want it to become a place that I use only for getting out my frustrations. I have a journal for that. I certainly do have many frustrations and feel overwhelmed quite often by the responsibility that weighs on me with regard to not only my children, but my husband, my family and my own health, which unfortunately, presents its own challenges that are outside of my control. Being the dreamer that I am… there are so many times that I wish just once I could have a magic wand to wave and take that weight off, even for just a while. But the more I think about it, I realize that there are a lot of times that I feel that weight lifted, even if it’s only for a few minutes.

Last night (and many nights) when we were finished eating dinner, Jackson, Jeremy and I were sitting at the table together (Braden bolts the minute he finishes inhaling his food) and Jackson was just sitting there making cute little faces at us and I couldn’t help but smile at his pure adorableness. For those few minutes, I just enjoyed him and the moment. Later in the night, it was just Jackson and I downstairs together, and he found a truck that he liked (one with buttons to push, his favorite) and he would push the button and the truck would light up and makes some sounds; he would giggle and push the button again and giggle some more. I got in on his game from the couch and began to giggle with him, which made him giggle even more and we began making faces at each other and giggling together. I relished those few minutes that we communicated with each other in the most innocent way possible. I spend a lot of my time reading, and writing words, but what Jackson and I were doing had no words, yet it was one of the sweetest moments of my day. I don’t know if Jackson will ever be able to say, “I love you, Mommy” but when we have those little moments together, I feel it and it takes some of that weight off of me.

I have those same moments with Braden too, but with Braden, things are a bit different. He can say just about anything he wants to, and he surprises us with his vocabulary sometimes. He talks like a grown up a lot, we often say, “Where on earth did he learn that?”. But Braden and I will joke around with each other sometimes, and those moments are just as precious to me as my little moments with Jackson. Braden has such a quirky sense of humor (just like me), but we butt heads quite often, more often than I would like to admit, probably because we are a lot alike. So, those moments with Braden happen less often than with Jackson, but when they do, I feel like I’m just a normal mom and he’s not autistic, for at least a few minutes.

So, despite the challenges that we face every day, I realize that I don’t really need that magic wand after all. Ok, that’s not completely true, I would LOVE to wave my health problems away but maybe someday, I’ll find a way to come to terms with that too.    

The Truth about Resources and Autism

In an ideal world, there would be more than enough money for families with autistic children to get ALL the therapy and services they feel is necessary. Unfortunately, we don’t live in an ideal world, the furthest thing from it. So, what does it feel like to be a parent who has two children with autism and live in a state that has a system that eliminates you from being able to help your children? It’s frustrating, heartbreaking, and worst of all you feel completely helpless. As a parent, I want nothing more than to provide my children with the help that they need, so they can reach their full potential. I moved, without really thinking about the difference in the ways one state manages resources for disabled children as opposed to another state. I’ve said it before and I’ll say it again, in Autismland, NOT ALL STATES ARE CREATED EQUALLY! Perhaps it’s my fault, and I should have done more research, but now that I’m here in this position; what am I to do?

The truth about getting help for a child with autism is that therapies are expensive. Even if you have insurance that is required to pay for services, you’re still required to pay specialists co-pays for therapists. Let’s say that the specialist co-pay is $30.00 and your child needs speech therapy, occupational therapy, developmental therapy and ABA therapy. Which is not covered by most insurance companies, or coverage is minimal with caps of $10,000 for life, which may seem like a lot of money, but not when it comes to ABA therapy. That’s about three to six months of therapy. The money runs out fast, but say you are desperate to help your child, so you at least get them into speech and occupational therapy, that’s $60.00 per week in co-pays and averages $260.00 per month (double that if you have two children on the spectrum). That’s about as little therapy as you can get away with. It’s sad and pathetic that it only addresses two issues that confront autistic children. It’s just not enough, but it still costs too much. Can you see how a parent could be frustrated? The truth is that if you are the parent of a child with autism, you are going to make a lifetime full of sacrifices for your child. Not just monetary sacrifices, but emotional sacrifices, physical sacrifices and you don’t even think about it. You just do it…if you can.

If you have a child with autism, you would be wise to research which states provide the best resources for disabled children. You would also be wise in your research to find out if the state bases eligibility for resources on household income scales. In most cases, only the poorest children in those states will be getting benefits. There are five + year waiting lists for some services, so it’s a complete waste of time even applying. The TRUTH is, that the middle class parents who make a decent living (but it’s not as if every dime they make is free to go toward therapy) are left to fend for themselves and are left to the mercy of the school system which is severely lacking in most cases. The truth is, that you can’t just live anywhere you want to. You have to go where the resources are, where you will get the support you need. A life with two autistic children is challenging. So what do you do?  

I have a child in the school system that is getting only a certain number of allotted minutes of speech therapy per week. The equivalent of a half an hour. That’s next to NOTHING! They eliminated his occupational therapy because he’s now capable of holding a pencil on his own. They don’t consider that he needs the occupational therapy for sensory problems. Yet they still insist that he needs to be put into a self-contained classroom. My other child is two and a half. He was diagnosed just after his second birthday, He doesn’t speak, he may have apraxia, and we can’t find a speech therapist within 50 miles on our insurance that works with autism and apraxia. That’s just speech therapy. He needs so much more than that, we simply can’t give it to him and it breaks my heart every day. You may hear me say that a lot in my blog posts, because there is always something that stabs you right in the heart every single day. Some days are better than others, but the reality is, that you will experience regular heartbreak as the parent of an autistic child (that’s where the emotional sacrifice comes in). Perhaps in my case I get a double dose of it, but that doesn’t stop me. I just keep going, the pain becomes a normal part of life but it certainly doesn’t mean my life is normal.

For the past six months, the frustration of not being able to help our children has been weighing very heavily on us. We’ve discussed the pros and cons of moving to another state where the resources are better. We’ve even had several conversations with our developmental pediatrician about it. First, we consider the economy and what jobs might be available to at least put a roof over our heads, and food on our table. Moving could mean major pay cuts, and more sacrifices (physical ones), but if the state provides substantial amounts of therapy, isn’t that worth it?

The truth about resources and autism is that it’s all about making sacrifices so your children can reach their full potential and it’s easier in some states than others so, make your life choices very carefully.