Perfectly Quirky

Raising a Person with Autism

Month: July, 2012

Sudden Verbal Explosion!: When Your Non-Verbal Child with Autism Begins Speaking

Until about two months ago, S bordered on being a non-verbal child. He knew a few signs… “more”, “milk” and sometimes “please”. He could also throw his hands in the air for “help”. He could say “up”, “hat”, “hug” and one or two other labeling words that really didn’t help us communicate with him. He did not say “mommy” or “daddy”, he could not say “hungry” or “hurt”, he really didn’t have any way, other than whining or crying to express what he wanted or didn’t want. This resulted in melt down after melt down and mounting frustration for all involved.

Parenting a non-verbal child is well, tough. I had another word I wanted to use, but I refrained. It is absolutely heartbreaking to see your child struggle, to see your child in pain, sad, angry, or scared and have absolutely no idea why or how to help him. Everything he wants, from something to drink, to I’m getting heat rash, to I want the ball, to I’m getting ready to throw up is not able to be communicated. This results in melt down after melt down and many a cocktail for mommy after bedtime.

About 3 months ago, S was enrolled in an early communications class through the Infants and Toddlers Program. The class meets two days a week for an hour and 45 minutes. Roughly 4-5 weeks after he was enrolled, we saw improvement. Soon, he was able to say “more”, “help”, “down”, “milk”. Then, just two short months ago, there was a verbal explosion! S now says everything from “waffle” to “octopus”, he can now tell me what he wants, from wanting to sit in his stroller, to wanting to play ball, to needing a snack.

Not to mention, I can’t tell you how awesome it is to hear two words we never thought he would say…”mommy” and “daddy”.

It is a pretty awesome thing, to be able to communicate with your child. This is something that most parents take for granted; I know that I never imagined the stress that not having communication would cause. I naturally always assumed that I would be able to communicate with my son… why wouldn’t I? I never dreamt that my child could have autism, that MY child would have a communication delay. That is something that happens to other people.

But, it did happen to our son. And, it is difficult, to say the least. S’s sudden burst of verbal communication has opened a world I was starting to think would never exist for our family.

The other day, S got a haircut (and a bad one at that). After he was done, the lady gave him a lollipop. Then, yesterday, S stood at the kitchen gate and asked for a “lollipop”. He was able to tell me what he wanted. Now, granted, we don’t keep that sort of thing in the house, so I did not have one to give him; however, I knew what he wanted and was able to offer a reasonable substitution, one that he accepted. All because we were able to communicate with each other. Just two short months ago, he would have stood screaming at the gate, while I offered everything from milk to sandwiches… having absolutely no idea that he was thinking of a treat he had earlier in the week. I can say that a ‘lollipop’ would have never crossed my mind.

There are plenty of other things too; all little things that add up to better days. From S wanting me to tickle him, to go for a walk, watch TV, color, read a particular book, see daddy or play bubbles. Each one of these things that he is now able to communicate, results in one less melt down. Less melt downs equal a better quality of time spent with each other.

Rather than playing the guessing game, we are playing actual games. We are getting to know each other better and I feel that I can better relate to him than I ever could before. Now, what else can I say about that?!


Getting a Formal Autism Diagnosis: Should We Have Waited?

We began the process of determining S’s delays around 16 months of age. By 18 months, S qualified and was entered into the Infants and Toddlers Early Intervention Program in our county. At 21 months, he was given a formal diagnosis of Autism.

At the time, having the actual label seemed to benefit us, S’s parents, a great deal. It didn’t change anything for S, as the county addresses his delays no matter why he is delayed. His schooling and therapy sessions stayed the same, regardless of that label.  However, we thought having the formal diagnosis might open more doors for treatment for S in terms of insurance and that it would enable him to receive more help outside of what the county provides for him.

For us, as parents, that label was also instrumental in coming to terms with the fact that S has autism. I know that for me, it allowed me to formally acknowledge that this will be a life long affliction and that it was okay to grieve. You see, before the diagnosis, there was always the hope of ‘what if?’. I mean, the writing had been on the wall for a while and the diagnosis did not come out of left field. We knew something was off and autism seemed to fit the bill. However, since he didn’t have the diagnosis, the label of autism, there was always, maybe he is just speech delayed or what if he just prefers to play alone. Maybe… just maybe… he will grow out of it. And, since there was that glimmer of hope, it seemed silly to grieve over the process. After all, if he is not autistic, there is no sense in making a big fuss over nothing.

And while having a glimmer of hope is nice, it also keeps you from accepting the reality of the situation and processing what it means for your child and your family. When the formal diagnosis came, it squashed any glimmer of hope in just a few short words… “S has autism, and that will NOT change”. As heartbreaking as this was to hear, in some ways, it was relieving. Hearing those words simply confirmed what we already knew in our hearts; except now, now we were able to truly process the reality.

The diagnosis allowed us to grieve. We could cry. We could throw tantrums. We could be sad, angry, scared, hopeless and bitter. I felt that we were finally given permission to feel all of the feelings that we had been feeling for the past few months. With the diagnosis or “permission”, we were able to comes to terms with S’s condition.

We were able to accept autism.

Well, all of that was great. It was great until I quit my job (you know, the one that carried our medical benefits) and tried to apply for private insurance. Apparently, even if you are currently covered under group insurance, you can be denied for private insurance. My two year old (and my husband) are being denied health coverage for preexisting conditions. Oh, and let’s not mention that my coverage is quoted at over $850 a month. So, for now, we are on Cobra- which costs about as much as a mortgage payment. With Cobra, we have 18 months to find coverage or we will be without healthcare benefits. Someone please, tell me again how this system does not need reform?

So, now I am left to wonder… had we not pursued the diagnosis, would we be able to get insurance for S? There are programs out there that we think would benefit S, but I am scared to file any autism related claims on Cobra, for fear that those claims will be further used against us in the future. As beneficial for us, as parents, that label was, I really think it is hurting our son, and our finances, in the long run.

I know one thing for sure, insurance is a scam.

It Has Been a Good Week: Sensory Issues Taking a Vacation?

It seems as if some magic autism fairy came last Thursday night and took the bulk of S’s autistic symptoms on a mini-vacation with her. This has proven to be a mini-vacation for us, and I am certainly hoping for an extended stay.

As you may remember, I had recently reported about S’s compulsion with shoes and his constant need for them on, but taking them off in stressful situations. He was also having issues with needing his hands cleaned several times throughout a meal and seemed to have developed an issue with things that dangled… shoe laces, price tags on clothing, stroller straps, etc. Magically, over the last week, these issues seem to be going away or, at the very least, minimized to a manageable level.

You see, last Friday, S woke up and did not demand shoes or even ask for them… for a full 3 hours.

Now, when he requests shoes, it is not a frantic plea as if his world will end without them. It is just a normal request for shoes.

I don’t know what happened, last Thursday night in his sleep, but I know I like it! In the past week, shoes have only come off a handful of times. S is no longer the frantic child removing his shoes and then demanding them right back on before he can finish taking them off. And, in turn, I am no longer the crazy lady frantically adhering to his demands. We have been to the pool… barefoot. Around the house… barefoot. Even in the car… barefoot. My little man has been able to enjoy so many things this week, since his world was not focused on his shoes! I even feel that I have gotten to know him better, now that our focus is more on each other.

At the advice of S’s teacher, when he does take off his shoes, they then have to stay off for an appropriate amount of time. This seems to have an effect! Once, when S began to take his shoes off, I got down on his level and calmly told him that if he took them off, they were going to stay off until we got home (we were at the store) and I asked if he would like to leave them on or take them off. He said “on” and there they stayed until we got home.

He has also ignored his dangling stroller straps, only asks once or twice per meal to have his hands cleaned and is, overall, seeming to have an easier time adjusting to stress. A consultation with an Occupational Therapist is still being scheduled for next week. Sadly, we both feel that these issues may come back (especially since we are selling our house and will be moving in a few months). The OT plans to give me some tips on how to handle this these issues as they arise, so that I am no longer the crazy lady at the store replacing shoes every 5 minutes.

These sensory issues may return, but I do NOT want that cycle to return. I really hope that I can respond more appropriately in the future as to not allow these issues to cycle out of control again. In the meantime, S and I will hopefully continue to enjoy our days without the stress of shoes. Who needs vacation when you can just run barefoot in the house?

“I Play- Kids- Peeepound!!”

Today, like many other days, I took S to the playground- or as S says it… the peeepound. However, today, he did not play alone, far away from other children. He was not off in the corner, alone, throwing mulch into a trashcan. He did not run away from anyone.

Today, S walked right up to a group of children and wedged his way into their game. Initially, they did not include him, as he was much smaller and younger than them. But, S persisted until he was playing right along with them.

Today, I watched S play with other children, on the playground, for over an hour. On the way home, he kept repeating: “I play… kids… Peeepound”.

Today was an awesome day.

The Good Days

As I have mentioned, the last two weeks with S have been very trying. I quit my job and pulled him from daycare- the same week that his therapy group at school went on summer break for two weeks. With all of the changes, and lack of school, S backslid such a great deal. The days were long and my patience was thin. I was genuinely beginning to wonder if my staying home with him was the best choice. I was tired. I was scared. I was sad. I was overwhelmed.

Then came yesterday.

Yesterday was such a great day. This blog is so young and I have really only shared our struggles so far. Well, autism doesn’t only have struggles; there are many good times and I feel it is really important to share the good days as well. So, here is some good stuff for you…

Yesterday, S didn’t ask for shoes until about 11 am- which is amazing. He ate well. He napped well. We played. We read. We played some more. During art time, I drew a stick figure and totally unprompted, he said “shoes!” and scribbled where the person’s shoes would go. His teacher said that was advanced for even a typically developing two year old. I built upon this and, following my requests, S added eyes, hands and a hat. Granted, it didn’t look even remotely like a person when we were finished, but it was pretty cool to see the connections he made. There will be plenty of time to hone in on his artistic abilities!

Then, after all of this fun, we took an early evening trip to the “peeeeeeeepound!!!!!!!”. (That is S for “playground”). Wow, we had such a nice time. He played on the slides, climbed the stairs, walked along the water, played with the bubble gun, had a snack and S watched me swing. He didn’t want to swing himself, he wanted “Mommy sit! Mommy swink!” It was a little odd having my two year old watch me swing not the other way around, but it was wonderful just the same. S didn’t want anything to do with the other children, but luckily we had the place to ourselves most of the time. In a way, that was great because autism wasn’t in the forefront. It had a chance to step aside and allow S to explore and play and not worry about other kids being around.

I also took several photos of S and a few of them may be my favorite of him-ever. I’m so glad that I have those photos to remember the day… one of the good days. And really, there are a lot of good days. Today has also been great and it is days like these that give me hope. They give me a sense that my family is somewhat normal and reminds me that there will be many more good days to come. And, granted, while there will be many more days like the ones we had the last two weeks, it is the days like yesterday that I need to remember and focus on during the rough times.

I am going to print some large prints from our trip to the “Peeeeeeepound!” and hang them on the wall as a constant reminder of each day’s potential. And, I promise to report back on the good days to come! I intend to report back often :0)

The Stares Over Stairs

So, now that I am home with S during the day, I have decided to take him, each week, to the local library for story time. Since he is two now, today he attended the 2-5 class, rather than the 0-23 months class. He is a big kid now!

Today was the first day we attended at this particular library branch, and let me tell you *how excited* I was to enter the room and find not only a stage with a step, but a picture of a skateboard! (Can you sense my sarcasm?)

As soon as we walked in, S spotted the stage with the step and there was no hope for getting him back. Then, once he noticed the skateboard photo on the wall- he became totally wrapped up in the two. Once again, I was heartbroken. Here I sat, watching 20 other young children, and their guardians, enjoy the story time and my kid was walking up and down a single step like he was teaching a step-areobics class.

At first, I was just going to leave, as I didn’t see the point in staying. But, I then decided that we would stay and that I would do all of the things the teacher was doing and simply invite S to join in along the way. On a few occasions, he did engage with me- but mostly, he just played on the steps and pointed at the skateboard on the wall.

Now, had S been loud or in any other way disruptive, we would’ve left in a heartbeat. But, he was being quiet, occasionally clapped along with the teacher and kept to himself on the stair. It was about half way through that I noticed it…

Someone was staring.

Someone was staring… at my child… and either noticing that he is different or thinking I was a shitty parent that couldn’t control my kid. It was fucking heartbreaking.

You see, in the past, S’s autistic tendencies were not as noticeable to others since he was so young. Unless you were really familiar with autism, you would likely just think that he is serious, or shy. But now, now that he is older it is beginning to glare- just watch him for 5 minutes around a group of other children and you can tell that something is off.

Just then, S bolted out the door and the same lady, that was staring, gave me the “you need to learn to control your kid” look. I’m not going to lie, it was hard to keep my composure. I so badly just wanted to tell Mrs. McJudgey to worry about herself and then run off so that I could break down in tears.

Now, I understand that this encounter was rather small and to most, would seem insignificant. However, I took it as a taste of what’s to come.

People are going to judge and stare at my child.

Accepting this is like having to accept the diagnosis all over again. Not only will S have to work to overcome the communication issues that he has, thanks to autism, but he will have to learn to deal with the stares, the judgements and the uneducated perceptions people have of autism.

We ended up staying for the entire session. And, we will go again next week, and the week after. Each week, we will go, and sit on the step and give S the opportunity to participate with the other children.

I will sit on the stairs and learn to deal with the stares. And, I WILL do everything I can to give S the best start he can get- regardless of what others think.

To Tell or Not to Tell: Is My Son’s Autism Up for Discussion?

So, I’m a pretty open person. In fact, I would say that in most cases, I tend to over share. I have a background in sales and work with the public. It is my job to be engaging and personable and that usually includes giving people a little bit of info about yourself to make them feel more at ease. Though, I won’t lie; I’ve always been that way, and I think that I really just like to talk. And, so what? Until now, that didn’t really matter; my business is my business and I can choose to share it with whomever I please.

In the past, I’ve never had problem’s keeping S’s, or any other family member’s, information private because it is their personal information and no one else really needs to know.

Enter autism.

Now, my son, S, his autism is just that… HIS autism. But right now, while he is mostly unaware of his condition, it is having a monumental impact on our family. It is pushing the boundaries of our finances, our marriage and our sanity. My world has become therapy sessions, group meetings, evaluations and picture charts. Every moment of my day I’m concerned with engaging someone that does not want to engage and trying to find new ways to interact with him. While this is S’s autism, it is affecting the entire family. However, you can’t un-tell things. Once someone has been told about S’s autism, it is out there and cannot be taken back.

So, for me, this is rather tough. When is it okay to tell?

For now, I have told people on an absolute need-to-know basis. Obviously S’s doctors and teachers know. I’ve told my mother-in-law and a close Aunt as they have helped us with getting S to some of his therapy appointments. I have told my sister, as she has a degree in special education and she has been of great support. My father knows, and two close friends know. I also told my former employer as I had to start taking off a ridiculous amount of time during the diagnosis process, and I only felt it fair that they know why. (They were absolutely fantastic at making sure I was available for all of S’s appointments).

But, no one else knows. Not my mother, none of S’s cousins, no other friends, no one on Facebook, not S’s hair dresser, the people we buy his shoes from, his God parents, our minister,  acquaintances…. no. one. else.

Now, overall, I have felt that this is a good approach. S has autism. I don’t like to say that S is autistic, as that makes it sound like autism is his whole self, and it most certainly is not. The average person meeting S, or even spending a great deal of time with him, might not pick up on his diagnosis, unless they are inherently familiar with autism. I mean, there were several months during the diagnosis process where we, his parents, thought he was ‘just fine’… and we were on the lookout for autism. However, it is a big portion of him, and as he gets older, it does become more and more apparent.

My hesitation in telling people is not only that it is his personal information, but that he will eventually become known as “that autistic kid” at family events and friend’s birthday parties. I don’t want S to be singled out… good or bad. I just want him to be a kid and have people include him as they would any other child. However, is this realistic? Will not telling people actually achieve in S being perceived as ‘normal’ or maybe just a bit quirky or will it eventually be so obvious to everyone that there is no denying it? As his autism becomes more obvious, it becomes harder to keep quiet and I wonder if my efforts to keep his personal information private do more harm than good. Sometimes I wonder if people would make more of an effort to engage him if they were to know why he doesn’t say hi or play with their kids.

Then, there is going out in public. I know that I shouldn’t care what people think of my parenting. But hey, I think most of us do on some level. When my kid has taken his shoes off and then demanded them back on ten times in the last 30 mins of our time at a restaurant, you start getting looks. “He really likes his shoes!” is becoming a less accepted response. When we are in a store and my two year old randomly tosses himself on the floor, picks up a piece of cardboard, lays on his back and uses the cardboard as a skateboard while holding his feet up in the air and screaming, you get more looks. And when family and friends can’t seem to get his attention to say hello, or get a response when they ask him a basic question, you get looks and some “awesome” advice on how to improve your parenting skills. Unsolicited advice is usually crap when it is given for typically developing children. When people who raised typically developing children 30 years ago, give you advice today for your child with autism, it is beyond crap. But we won’t go there.

Sometimes, I wonder if things would be easier if I just said “S has autism, so that is why he…”. But, who would that be easier for? Mostly me?.. that I can’t justify. But would it be better for S? Will the hair dresser be more patient with him during hair cuts? Will the person fitting his shoes get less irritated with him wanting them off as quickly as he wants them on? Will the parents on the playground encourage their children to try just one more time to play with S?

Will people  really be more tolerant and accepting of his quirky behaviors or will he just more quickly be written off as ‘that weird kid’? And really, is my telling or not telling really going to have that much of an impact on how he is perceived and treated by others? Are people just going to form their judgements anyway?

It’s a cruel world out there… especially for “that kid” with autism and I know I can’t protect him from it forever.

Shoes! Shoes! Shoes!: Is this an Autistic Sensory Issue?

“Shoes! Shoes! Shoes!” If I hear this exclamation one more time I *may* crawl out of my skin. For as long as my son has been wearing shoes, he has had quite the affection for them. I think I really first noticed something with shoes around a year of age. Well, I guess that is when the majority of his quirks started to come a bit more in focus. He LOVES wearing shoes. He also loves taking them off and then demanding that they be put right back on. At first, he just wanted them on… ALL. OF. THE. TIME. Bedtime, nap time, dinner time, snuggle time, bath time.

Yes folks, bath time.

Now, I could allow the sleeping in shoes and the snuggling in shoes… but bathing? No, no, you simply cannot wear your shoes in the bath tub. Oh the tantrums we have had over no shoes in the bath tub.

Eventually, the shoe issue moved from wanting them on all of the time, to wanting them on, but taking them off when he is stressed, bored or otherwise unhappy. Have we spent too much time in the car? Shoes must come off! Too long at the grocery store? Goodbye shoes! Did his favorite show just end? Well, better take those shoes off! And so the battle begins. This week, I made the error of purchasing S shoes that have laces. Based on his frantic reaction of absolute panic, you would have thought the laces were going to eat time alive. Lessoned learned.

Here is an average day involving shoes:

S wakes up, happy and babbling. I go into his room to find a happy, smiling boy, arms reached and asking for a hug. We snuggle for maybe a minute or two and then it starts… “shoes! shoes!” as he points in the direction of his shoes. So, we get out of bed and I start to change his diaper. The exclamations get louder and more frantic. He does not want to wait until a diaper change is over, he wants shoes on and he wants them on NOW. Obviously diapers, pants and socks all need to go on before shoes and, as the dressing process progresses, the cries for shoes get more frantic and more desperate. Eventually, we get to shoes and genuine joy and relief washes over both of us. We can now move on with our day.

Only, it doesn’t end there. Not ten minutes later are we sitting to eat breakfast when round two of “shoes! shoes!” begins. You see, if he is stressed during breakfast (maybe it took too long, maybe it’s not what he wanted to eat- you get the picture) he kicks off his shoes. However, since he always wants to have his shoes on, he then immediately cries in a panic (sometimes before he is even finished taking them off) for me to put them back on. It is relentless and exhausting. Refusing to put them on simply sends him into a frantic tantrum and further into the ‘autistic abyss’ and I’m not a fan of watching my child disappear before my eyes. So, I put them on. Only, anywhere from a few hours to as little as a minute later- the shoes are off again and the demands to put them back on have returned. Rinse and repeat about a million times throughout the day.

There have been a few times where I have managed to get him to watch tv, on the couch, sans shoes. All will seem well in the world until he stands. Here, he will immediately drop to the floor, grab his foot while screaming “foot! shoes! foot!” and banging his foot on the floor. He is frantic and sounds panicked- like he is on a sinking ship and the application of shoes is the only thing that will save him and his family from dying a painful death. It is heartbreaking. It is frustrating. It is something I have no idea how to handle.

Early in S’s weekly therapy sessions, I discussed these concerns with his teachers. We have tried slippers, sandals, footy pajamas (this was a freaking disaster) and all sorts of things to get his focus away from shoes. The slippers and the sandals worked for a while, but in the end, it always came back to shoes. At this point, S’s service coordinator has suggested scheduling a consultation with an occupational therapist, in hopes that they can give us a better perspective on how to handle the shoe issue, as well as a few other possible sensory issues that S may have… Long pants? Not gonna happen. Dirty hands? Better have a clean rag handy! Blanket? For snuggles only- don’t bother putting it on. And clothes? Well, just this past week have we gotten him to keep his clothes on all day and night. It’s nice to go to the grocery store without your child screaming “off! off!” while tugging on his pants and shirt.

I guess this is just one of the many added joys of raising a child with autism. The hard part, is figuring out what is just normal toddler behavior and what is the autism. I mean, if not wanting to wear clothes is just a part of S’s normal toddler development, than I have no problem putting my foot down and saying ‘no, you must wear clothes in the living room’. I will deal with the inevitable tantrum to follow. However, if there is some sort of autistic sensory issue that makes wearing clothes incredibly uncomfortable for my child, then no, no, he does not have to wear them while chilling on the couch with his family. So, how do I know which one it is? Where is my magic ball that tells me what my child needs? Or really, why can’t my child tell me what he needs?  Because really, at two years of age, my child should be able to communicate to us more than repeating a word twice in a demanding tone.

Being a parent is hard enough when you are just dealing with the everyday challenges of raising a child. When you toss in autism it becomes that much harder. S is much less verbal than other children his age (though, much more verbal than many autistic children his age- for that I am very thankful). However, because of this, I am less confident in my decisions with what I allow and don’t allow S to do or have. If I knew that a behavior was or was not related to autism, I think I could determine the best reaction and stick to it… but I don’t know.  Communication with S is pretty limited and, as a result, I am always second guessing myself. This makes it harder to be consistent and guess what? Autistic children thrive with consistency. How is that for a double load mommy guilt? Autism really knows how to play its cards.

A Trip to Holland: My Take on this Special Needs Poem

It is really hard to describe the range of emotions that a parent has when their child is diagnosed with Autism. For us, we had known that something was ‘off’ with S for some time- so the diagnosis was a bit of relief mixed with a ton hopelessness. Getting a formal diagnosis left me feeling so desperate and so out of control that I still can’t even accurately put it into words.

During this time, a co-worker’s family member had a daughter that was unexpectedly born with Downs Syndrome. This came as a complete shock to the family and it took them a few weeks to settle into their new role as parents of a special needs child. Once they began to come to terms with their daughter’s diagnosis, they sent the following poem out to family to help describe where they were emotionally. My co-worker quickly relayed the poem to me, in hopes that it would offer some support.

The poem is called “A Trip to Holland” by Emily Perl Kingsley and a version of the poem may be found here. I have copied it below for those who can’t access the link:

I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans… the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. 
You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. 
So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, ” Yes, that’s where I was supposed to go. That’s what I had planned.” 
And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Now, initially, this poem made a great deal of sense to me and really helped me through that first week  of coming to terms with S’s diagnosis. After all, S is still the same little boy that I have adored since I first held him in my arms. He hasn’t changed, we just now know why he is the way he is. I embraced the idea that S’s diagnosis was just a little detour in life, an unexpected journey into new territory… I bought this poem… hook. line. sinker. After all, it is a very logical poem that really makes coming to terms with this diagnosis seem very straight forward and simple. What was not to like?

But, what this poem doesn’t touch on, is the reality of this detour. This is not as simple as leaving for Italy and landing in Holland and not even realizing you were headed in the wrong direction in the first place. When your child is going through the process of an autism diagnosis, you know that it is coming.

You know your plane is heading off course.

But, you tell yourself that you must have remembered the route wrong, or that each pilot has his own flight path, but that your final destination will be the same. Once you realize that no, your pilot is most certainly taking you somewhere else, you will desperately do everything in your power to stop him- but, there is nothing you can do- because you are trapped in the plane and there is no. way. out. In fact, you may have to fight a million battles just to get him to land.

Then, once you land, not only are you forced abruptly off the plane- but you are left alone to figure it all out on your own. Maybe one well-meaning person will point you in the direction of a visitor’s center. But, I can assure you that all of the information you will need is in another language and will cost you twice as much as you have brought for your trip. Sure, you will learn the language and the land, but how will you survive in the meantime? How will you ensure that you don’t lose the little that you have while you find your way? Let’s not forget to mention that all of the ‘best’ information changes daily and most of it conflicts with each other. How do you know what to believe?

Once you have decided to make the best of your trip to Holland, you will find that in order to actually see any of the sights, you will need to take a seemingly impossible to navigate travel system. 75% of the time, that system will not take you to the sight you want to see. You will constantly have to transfer cars in an attempt to get where you are going… when one fails, you move on to the next. Except, each transfer costs you thousands of dollars and days of your time and before you can transfer, there is a ton of paperwork to fill out and applications that need to be approved. And, there is no guarantee any of this will get you closer to where you want to go. Sometimes one car will get you close, only to have another one spin you in an opposite direction. All the while, well meaning friends and family try to assure you that you are, indeed, in Italy.

Overall, “A Trip to Holland” is a good way of explaining the basic emotional process that you go through to friends and family. The ultimate message that I received from this poem is that you need to accept that things are going to be the way they are and that you might as well enjoy them. After all, the only other option is to be miserable… and that is no way to live life.

I have accepted that my son has autism and I am doing my best to enjoy every day that I have with him; after all, there are many mommies out there who won’t get to tuck their children in tonight. I am so very grateful for all that our family has in life.

However, it doesn’t mean that S’s autism has just caused a simple little detour in our lives. It is not like taking a wrong turn and being delighted to find a new awesome coffee shop around the corner. It is like everything you need or want to do in Holland is ten times more difficult and costly than in Italy. No matter what you do in Holland, you feel completely alone and like you stand out like a sore thumb…  and you just know you would have blended right in in Italy. Not to mention, this is NOT a vacation. You do not get to leave and go back home one day… the life you knew before the diagnosis and the one you had always envisioned for your family in the future is gone. Your child will deal with this detour forever.

When you are raising an autistic child, your Holland is filled with a lot of additional, and very difficult, obstacles… and everyone around is sipping coffee in Venice.

Autism Comes with an Extra Portion of Mommy Guilt. MMMMMM…

So, once upon a time, a long long time ago, had you asked the 10 year old me what I wanted to be when I grew up, I’d say: a stay-at-home mom and a photographer. Well, 5 years ago, after having studied the trade for over  a decade, I opened my own photography business. I worked another full time job while I built my business and I did it, because while I knew we would never be in the financial position for me to be a stay-at-home mom, photography would allow me to be a work-mostly-at-home-mom. About 2 years into building my business, I finally became pregnant with S and I was more determined than ever to put my plan into action. For the first two years of S’s life, I worked two full time jobs. Go ahead, you can re-read that sentence. Yes, I worked two full time jobs while raising a baby. I averaged 2-4 hours a sleep a night, but it was all worth it… because I knew I was working for a better life for my child and my family.

Now, I am sure that many of you are working parents. And, as such, I am sure that many of you understand the concessions that you make with parenting when you are a working parent. Someone else is caring for your child for 45 hours a week and well, sometimes you just have to allow things to be done the way they do them. There is some mommy guilt for ya! Not only does working keep you from spending the time you would like to with your child, but you also have to compromise on your parenting choices for your child. As time progressed, and S’s issues came more into light, I felt it was even more critical for me to be home with him. While his daycare was fantastic- they were just that- daycare. They were not a special needs education facility and they simply did not have the time (nor was it their responsibility) to provide S with one-on-one communication therapy throughout the day. Every day when I dropped S off at daycare, I felt the guilt. Guilty that I was not providing him with the consistent level of therapy and interaction that he needs to help rewire his brain to function a bit more normally. As S’s delays became more and more apparent our determination as parents for me to stay home with him became stronger. This, I thought, will be just what S needs… someone who can be there for him all day, one-on-one, helping him progress.

So, last month, I quit my day job. I am now a full-fledged, self employed, full-time photographer. Now, that’s scary! It has now just been two weeks that I am home with S during the day and I feel like he is back sliding. Honestly, I’m not sure if I just didn’t notice just how much autism has affected our son, or if maybe he is regressing due to the lack of structure here at home. Either way, I’m only a a few weeks in and I already feel like I’m failing him.

So, let’s recap… When I’m a mom that works outside of the home? Mommy guilt! When I’m a mom that works mostly from home and gets to spend almost all day and night with her kid? Mommy guilt! Yay! How awesome is that?

You see, before S’s diagnosis, I would feel a small tinge of guilt if I turned on the TV instead of playing a game or allowed him to play alone instead of joining him. I felt that I was cheating us out of quality mommy/son time. There you have your standard, run of the mill, mommy guilt. Now, toss autism in the mix and you get a whole extra helping of guilt. Because now, now I’m not just worried about missing out on some fun Momma J and S time, I’m worried that my lack of interaction with him will allow him to slip further away or somehow increase his autism. And you know what? As much as I love being around my son, I can’t be ‘on’ all of the time. It is so tiring to turn every encounter into an opportunity to increase communication. Sometimes, I just want to play puzzles or play doh with my kid without trying to use it as a tool. And you know what? sometimes I just want to plop him in front of the TV so that I can mess around on Facebook for a few minutes or read an article or clean my kitchen.

All of this makes me feel like a shitty parent. And, while intellectually, I know that this is not true… it is how I feel. I feel this way because autism is the master at making you question your ability as a parent.

So, tonight I am going to write out a set schedule/routine for each day. S’s early intervention team is making us a picture calendar to show S what is going to happen throughout the day and to help keep me focused on maintaining a schedule. This stay-mostly-at-home- mommy thing is a lot harder than I thought and I feel guilty that I over-estimated my abilities.