Wednesday, April 1, 2009

Why It REALLY Is So Difficult...

Like most children with autism, when in a group of children, Reiss is indistinguishable from other typical* children. One would not know Reiss has autism simply by looking at him. I don't know what people expect to see but you would be surprised how many times I've heard the comment, "Well, he doesn't look autistic." To which, I want to reply, "What does autistic look like?" But, of course, I don't.

In recent weeks and months, I have had several conversations with different individuals regarding the aspects surrounding Reiss' autism and the things that make him different from other children. Usually when people find out out his diagnosis, they have a lot of questions. Having others be inquisitive is preferable to them being judgmental any day of the week. I even tell people that I would rather they ask me questions and admit to their ignorance than to judge me and look stupid. Often this gets a little laugh out of them and loosens them up to not feeling so awkward while asking me their questions.

Between the conversations I've had and some of the looks I get from people when we are out, it has made me want to do a post like this for quite some time now. It is not meant to make people feel sorry for us or to make others feel badly for asking questions. It is meant solely to provide a better understanding of why it really is so much more difficult for parents of children with autism. This is also not meant to be directed at any one individual. If you are reading this and thinking I'm writing it because of a recent conversation you and I have had, please understand that this is something I have wanted to do for months - even before I began blogging.

It has been on my mind for a long time to sit down and write out the things that frustrate me and why I feel autism is so misunderstood and underestimated. It's almost like a longing to want to have a piece of paper - a crib sheet, per se - to give to people so they can see that when you simply look at Reiss and see a sweet little boy, that there is actually much more behind that little face and why parenting has been such a long road and difficult journey for my husband, me, and many other parents of autistic children.

With that, let me start at the beginning, back nearly four years ago...

Reiss was born in the summer of 2005. Other than being delivered by c-section because he was in a nearly-impossible-to-turn breech position, his birth was pretty normal. I didn't know what it meant at the time, but in the hospital at only a few hours old, the nurses informed - or perhaps I should say warned - my husband and me that "This one's gonna be a handful."

After leaving the hospital, like all babies, Reiss always wanted to get up to feed several times per night. At a few months old, we tried the "Babywise" method of getting him on a schedule of eating and sleeping. Not being one to tolerate letting a baby cry it out and eventually coming to the conclusion that it's not the method God intended, we ditched the Babywise method and never looked back. These days I warn any new mother against this method but all new parents have to do what works for them, I suppose. Personally, I believe it's about what's best for the baby and not me, but maybe that's just me.

At eight months old, Reiss had still never slept through the night and was literally waking up some nights as often as every 15 - 45 minutes. When I say it's not about what's best for me, I sincerely mean it, but by this time I thought I was either going to die from lack of sleep, go crazy, go on a shooting spree to let out some frustration, or all three. Something had to be done and that is when we decided to let Reiss co-sleep with us.

Other than the sleeping issues, Reiss seemed to be developing fine. He crawled at around eight months, walked at thirteen months, had several words in his vocabulary, ate a varied diet, and was pretty well on target with his milestones. The only thing that stood out - and only to his doctor, not us - was that he was only in the 5-10 percentile on his weight. The lactation consultants at the hospital where I attended a weekly breastfeeding support group assured me that he was fine on his weight. They went on further to add that most doctors get their baby growth charts as promotional items from baby formula consultants visiting their offices and that formula-fed babies generally tend to gain more quickly than breastfed babies. Either way, we didn't mind. He was gaining weight regularly so we didn't think it was a big deal.

At just before thirteen months, Reiss received his one-year vaccinations. Not long after that, we began to see some changes. Reiss seemed to be developing at a much slower pace than before. He started losing some of the words he had previously said. He used to do the cutest thing where he would excitedly say "awesome" and do a little fist pump into the air. He stopped doing it. He stopped dancing whenever he heard music. He didn't seem as coordinated as he once had been. As time went on, we kept noticing things here and there that just didn't seem right but parents of older children assured us that children develop at their own pace and Reiss seemed "normal." Unfortunately, we didn't listen to the one and only person who told us that we should call First Steps if we had concerns. After all, why should we have? Everyone else assured us Reiss was just like other children.

Fast forward to last year around this time. Reiss was closing in on three years old and by then, we were pretty sure Reiss had some developmental, behavioral, and speech delays so I called First Steps. Although I had read a lot about autism and knew Reiss exhibited some of the symptoms, it was the farthest thing from our minds. After all, a lot of typical children do many things that are categorized as symptoms of autism but they don't have autism - they're just doing things children do.

Because Reiss was so close to turning three and First Steps only deals with children up to the age of three, we were told to call the public school system. We did. In the meantime, we began seeking help on the medical front and I am not even going to explain all that but suffice it to say that Reiss was diagnosed with only one appointment. That was in December and the demand for help with autistic children on the medical front is so high that Reiss doesn't even have his second appointment until May! wonder parents of autistic children are so frustrated. Back to the public school system...misplaced paperwork, Summer Break, refiling the paperwork, jumping through an uncountable number of hoops, and having an evaluation later, Reiss was finally placed in developmental preschool in January of this year.

We have also begun using DAN! (Defeat Autism Now!) protocol in seeking medical help and Reiss has his first appointment with a DAN! provider this month! Because there are only five DAN! providers in the entire state of Indiana, we were going to have to wait until October to see one of the other providers whose schedule is booked up nearly a year in advance. However, the appointment we have is with a doctor who is new to the DAN! approach to autism and his schedule is - thank God! - not yet booked for months in advance.

That is pretty much the story of how we came to where we are now. As for addressing the issue of why things are so difficult, here is a list of things we face on a daily basis:

Reiss will be four years old in about three months. In his nearly four years of life, he has never technically slept through the night. If you count the medical definition of "sleeping through the night," which is (last time I checked) sleeping for six hours straight without waking, Reiss has done that less than a handful of times.

Imagine a child who not only does not respond to traditional disciplinary methods, but in many ways, does not even understand that the method is meant to be discipline or that he has done something wrong. That is Reiss. Timeouts have never been an effective means of discipline for Reiss. Taking things away rarely means anything to him because autistic children typically don't place a value on objects or others' feelings.

Reiss has severe impulse control issues. He cannot resist doing things even in the occasional instance when he knows what he is about to do is wrong.

Watching television is not something Reiss does. No parent wants their child to obsess over watching tv but having the freedom to plop a child down to watch an Elmo video for even five minutes would be nice. I don't have that freedom or that luxury. Reiss simply does not watch tv.

Self-entertaining is a challenge, to say the least, for Reiss. It's not that he never does it, it's just very rare. My days - when Reiss is not napping like right now - and my husband's evenings are consumed almost entirely with taking care of Reiss, keeping him entertained, and making sure he is not hurting his sister...which brings me to the next thing.

Along the lines of Reiss having impulse control issues, he is obsessed with trying to hurt his sister. There are many times when he plays very nicely with her. However, there are many more times when he cannot be left in a room with her without hearing her scream and my husband or I returning to the room to see him lying on top of Milla, pulling her hair, stepping on her arm, squeezing her head, or a variety of other things he likes to do.

Reiss is very fortunate in the speech department as far as autistic children go, in that he now has a very wide vocabulary. Unfortunately, he doesn't know how to use it properly in a lot of situations. He cannot carry on a simple conversation that a typical child his age could. Yes/No questions are usually met with a blank stare or repeating the question (echolalia) back to us. He cannot express simple wants and needs to us many times. It is only in recent months that he has - and not regularly - begun to tell us when he is hungry.

Reiss lacks social skills. If a group of children are playing, most often he is off to the side doing something entirely different. He would never walk up to another child and ask if they want to play because he not only lacks the social knowledge to do so, he couldn't care less the other child is even present.

Tantrums....oh, where do I begin? Let's just say everything is met with a tantrum. Since beginning all our diet restrictions, we have noticed a difference in the number of tantrums but Reiss still has way more tantrums than a typical child his age. His tantrums originate over literally anything. One might be over the color of shirt I've decided to wear on a particular day. Another may evolve because his food was cut up and we can't "put it back together." He has always had an obsession with his shoes to a point where he even wore them to bed for a long time. Asking him to take off his shoes is quite often met with a meltdown. The tantrum we face most often is when he starts crying and his face gets wet from the tears. He doesn't like his face being wet so he wipes it on his shirt...then his shirt is wet and then more crying because he doesn't like that either. And it's a vicious circle that's like chasing your tail because he doesn't grasp the concept that if he would stop crying, there would be nothing to get his face and shirt wet.

Reiss lacks coordination. We can show him the simplest of moves and he cannot duplicate them a lot of times...things that Milla can.

Sitting still is non-existant for Reiss. Besides eating such a strict diet, this is another reason why it is next to impossible to take Reiss to a restaurant. It is also nearly impossible to take Reiss places on my own without help from my husband because Reiss runs away and is gone in a flash. Putting him in the stroller doesn't solve the problem because he knows how to get out of the seatbelt. Putting the "leash" on him no longer works because he has a never-ending meltdown at the mention of it. Disciplining him for running doesn't work because, again, traditional discipline does not work with him and we have yet to find the magic method that not only works for him, but makes him learn not to do whatever he is being punished for again in the future.

Things have to be "just so" for Reiss. I will give credit where credit is due. Reiss has gotten much better at handling things that change but it used to be that if he was playing with say, the blue truck, and had left it and came back to find it moved - even a fraction of an inch - it was cause for an all-out meltdown.

Now I know a lot of these things sound like typical four-year-old behavior. And I've even had people tell me, in not so many words, that I should try to keep my frustrations at bay a little better because whatever Reiss is doing at that very moment is just him being a four-year-old. However, what those people don't see is that I have not only had to deal with whatever is going on at that moment, but all the other stuff that goes on constantly. When I have to "put out a fire" practically every waking moment of every waking day of my life, when sitting down for more than thirty seconds at a stretch is a complete luxury, when I feel trapped because I love my child so much but just wish he would be "normal," when I have to worry that my child may never have friends (this is the absolute worst and breaks my heart), when I hear other parents complaining about how poorly their children does this or that and know that my child may NEVER do it at all, grates on me. And that is why it really is so difficult having a child with autism.

*I have explained this on many occasions but feel it necessary to repeat: "Typical" is the politically correct term used for referring to children who do not have autism or other disabilities. It is not meant to be derogatory and I am not the one who declared it to be the term to use. This term is used in every piece of autism-related piece of literature I have come across.


Viv said...

Okay, so I am wondering how to say what I am thinking...and it is pretty hard for me because I am spectacular at putting my foot in my mouth. So, I am going to pretend that we know each other well enough to not be offended by my honest and uncensored thoughts. In other words, my apologies, if necessary are being offered now, ahead of time.

I find what you are writing about when you write about your son fascinating. In the sense that you interpret for me, the reader, what medical jargon means to your family in everyday life.

I hope that you will continue to write about your experiences, as a Mom and as a family. Thank you.

Maybe we are rabbits said...

That sounds intense. I know that there's been a lot of talk about autism in recent year, but I don't think that a lot of people (myself included) have any idea what it's like to deal with an autistic child on a daily basis. I hope that blogging is at least somewhat of an outlet for you, knowing that we're out here rooting you on.


kim said...

Your son's story of how he started with typical development and then lost skills sounds familiar. We went through some of the same. I put my foot down when he was about 18 months and insisted on further testing as I knew something was going on. We had an older child and the doctor kept telling me I was doing too much comparing. When he lost skills, I refused to budge.
We had HUGE success with cranial sacrial therapy. Miles would wake several times throughout the night with night terrors.
He also had huge sensory issues: he would squeeze other children, roll in bushes, head-butt everything and anyone. After about four sessions with our CST he was sleeping through the night and the head-butting was gone.
It is still the most effective treatment we have ever had.
As for the DAN protocol, I am going to warn you to take what that doctor says with a grain of salt just like any other doctor. While I think DAN doctors are on the right track I think that many times they want to follow one protocol that does not necessarily work for every kid. You may leave there with a list as long as your arm for supplements. Go slow. You may also be asked to run a huge amount of tests. I have found the best test to be watching my kiddo and knowing him well enough to have a gut feeling about what is working.
I know this is unsolictited advice, but I speak from experience. I have seen too many parents get so hooked into DAN while their kiddo spirals out of control. You and your hubby alone will always know what is best for your son.

Mum-me said...

Are you thinking the 12month immunization was the starting point of your son's autisum? Only asking because my SIL insists her son was fine until he had his.

I really feel for you as I saw my SIL struggle with all this sort of thing too.



To be totally honest, I don't know if the 12-month vaccine had anything to do with my son's autism or not. For that matter, neither do even the world's top doctors. Unfortunately, NO ONE knows because the medical community is basically "owned" by the pharmaceutical companies and since they would take a loss if the vaccines were found to cause autism or anything else, they refuse to conduct testing.

Doctors who feel there is a correlation between vaccines and autism are written off as quacks and average people like myself - but most of all, our children - are the ones who lose.

In the coming week or two, I will be addressing this subject in a post presenting not only my own opinions, but worldwide statistical facts regarding autism and vaccines.

Stay tuned...

Chimera said...

I have just come across your blog & found this post quite by accident. I hope you find this comment too.

My heart goes out to you.

I have a son, almost 10, who seemed to never sleep more than 15 minutes at a time (until he was about 2 & even then we didn't get a good nights sleep for years after), suffered night terrors, had mild sensory issues, had more meltdowns than I care to remember, and on it goes.

Yet my son is what 'they' would call 'typical'. My father who was a special education teacher for many years and taught a number of autistic children commented that my son has an awful lot of characteristics in common with autistic children, but yet he does not have autism.

9 years later, I still remember the nervous breakdown that I was always on the edge of but never tipped over because I just didn't have the energy.

Please keep up your awesome blog, and take strength from those supporting you in spirit & with kind words left on a comments page.

Thank You