Medically Necessary

I hate those two words. They make my blood boil! Who is to say what is and what isn't medically necessary. The insurance companies, that's who!

Poor Tim has been trying hard to get ahold of our insurance company to see just what we will be covered for with Wes's therapies, neurologists, nutritionists, ect. Well they can't give him a straight answer. He might be covered for this and might not be covered for that. We don't need a referral, but we might want to get one so that it will be covered more. AARRGGHH!
I don't need more stress then I already have. Why do they have to make life more difficult for people. We pay a lot of money every week to insurance only to be told "sorry, too bad". What good is it?

I want Wesley in speech therapy. He already has Occupational Therapy and will be seeing a Behavioralist soon, but he really needs help with his speech (or lack thereof). Well that is one of the mights. He might be covered and they want us to ask the therapist we plan on taking him to if they have ever given therapy to a child who has autism and has this specific insurance plan. WHAT!!! Aren't they supposed to know this?

We don't have the extra money laying around to pay for these therapies out of pocket. What are we supposed to do? I want the best for my son and give him every opportunity to thrive and become a functional human being. Of course it's medically necessary for him to have a ST (speech therapist) because the kid is LACKING IN HIS SPEECH! It's part of the Autism and not because he is just lazy. Do you think people just send their kids to these kinds of therapies because it's fun? I would love it if Wes could communicate with me and didn't need any of this, but the reality is, he does.

Wes has a problem with chewing and swallowing his food. They think that the muscles in his mouth are immature which could also be the reason for not being able to form words. All insurance will pay for is 4 sessions in one year. Yeah, because that's enough to teach a child how to chew and swallow properly.

It looks like we're going to have to start taking out loans already just to pay for our child to get through life as normal as possible. We're only 4 weeks into this and I'm ready to blow up the medical communities out there. Powerball, here we come.

The Grieving Process

It sounds weird to think of someone grieving over something you haven't lost. When we think of losing something, we think of a physical loss. It's not entirely true. You can grieve over other things that aren't physical. Such as having a child diagnosed with a disorder or a disability or not being able to experience something others take for granted.

The last couple of days have been really hard on me. I've had time to let the diagnosis sink in and think of the reality of it all. Time to think about my son's future and what it now holds for him. It's scary. The most scary aspect of it is not knowing. Not knowing if he will become a functional adult in society. If he will hold down a job, get married, have kids of his own. The not knowing is killing me. I grieve for the child I've lost. The "neurotypical" child that I thought I was raising, turned out to view the world in a way I never thought possible. I grieve because I can't do the things I wanted to do with him, I can't say the things I want to say to him and get a response back. I grieve because I thought life would be so much easier now that he's older.

Most of all, I grieve because I feel like I'm missing out on Casey's babyhood. I have become so wrapped up in Wesley and his diagnosis, that I've left little time to enjoy watching Casey grow up. I don't do the things I did with Wesley. I don't cuddle in bed with him until noon, I don't lay on the floor with him and tickle him like crazy. I'm too busy trying to engage Wesley, trying to get him to play with me, look me in the eye, focus on the task before him. I love Casey just as much as I love Wesley, but I feel like an incompetent parent when it comes to him. I don't ever want to make him feel inferior to his brother. He is and will always be an important part of our family. I just don't feel as strong a connection with him as I do with Wes. Just writing that makes me sick to my stomach. I am lacking in a connection with my child. A child that I wanted. I feel more incompetent then before. That is just so unfair to him.

From this moment, I make a promise to Casey that I will do everything I can to be the best mother I can for him as well as for Wesley.

Looking Through a Window

When Tim and I discussed having children, we knew we wanted more then one and we knew we wanted them close together. We wanted them to be close, to be confidants, to depend and rely on each other.

When Casey was conceived, Wesley was only 14 months old. I knew it was going to be tough to have two small children and everyone I met said "good luck!". Gee, thanks. I thought "I can handle this, no problem!" I dreamt of my two children playing on the floor or swimming in the lake at the cabin in Maine. It was going to be so nice watching them grow up together. Best Friends.

Four months into my pregnancy is when I started noticing Wesley had some delays. I started worrying what if the new baby was as difficult as Wesley was, and still is. What if I had two children who demanded my attention at all times. Could I handle that? There were points in my pregnancy that I wished I had waited and wanted to throw in the towel before Casey was even born. Then I started to hear that you never get the same child twice. A bit of a relief, yes, but not enough.

When Casey was born, Wesley had no interest in him at all. I figured it was normal. Wes payed him no attention and even ignored me for awhile. Then he gradually came around. He acknowledged me first, and then Casey slowly. He would pat his head, give him a small kiss but never really interact with him. The boys pediatrician said to give it time. Once Casey was more alert and wanted to play, Wes would come around. Well that day has come and still nothing.

One day, Casey was in his swing and Wesley was pushing it. At first I told Wes to stop because I didn't want him to swing Casey too hard. Then I heard Casey squealing with delight. He was so intent on his big brother and excited that he was in front of him. Wesley didn't crack a smile or a giggle. Fast forward a couple of weeks. I put Wes in Casey's crib (mistake, I know) so Wes could play with the Fisher Price Aquarium and play with Casey. Casey was laying next to him and laughing at Wes' antics. He would kick his little legs out and reach for Wes. Every time he made contact, Wes would pull away like it burned him. It actually broke my heart. Here Casey was, showing this great amount of love and adoration for his brother, and got nothing in return.

When I see Wesley looking at Casey, it's as if he's looking through a window. Does he see Casey or is he just staring through him. Casey is trying so hard to make eye contact with him, to bond, to make friends. Wesley doesn't. Are my dreams of having my children be best friends over? Will Casey ever have a connection with Wesley? Only time will tell. I won't give up hope that they will someday bond. My efforts will not be futile. Granted, my vision has changed slightly. Now I see Casey as Wesley's protector. He will stand up for his big brother and keep him safe, especially when I'm gone. Even though I would like to, I won't live forever. But before I go, I'll make sure when Wes does look through that window, he sees something greater on the other side.

It's Potty Time!

Today I bought a potty chair for Wesley. We were told by the Developmental Pediatrician who diagnosed Wes, that we shouldn't count our stars on potty training because most Autistic kids take a lot of time and aren't usually ready to potty train until they are about 3 1/2 to 4 years old.

Tim and I understand because Wes has few words and "potty" certainly isn't one of them. I thought that we could keep the chair in the living room at first. Give him a chance to get used to it, like to sit on it and play with it. It's one of those cool interacting ones. It senses when the child sits and sings an encouraging song. At the bottom of the pot, it has sensors so it knows when the child has gone and again plays a great "way to go" song. It reminds the child to flush and wash their hands when they are done. It also has a sticker dispenser for rewards and a chart to keep track.

I'm not holding my breath on this happening soon. We do notice signs that Wesley has to go. He usually hides in a corner and whines if anyone comes near him until he's "finished". If you get to close, he'll put his arms up, fists out and really whine. We usually just leave him be and when he comes back into the room, we change him. He hates to have his diaper changed, although, he's finally got it that it's gonna happen whether he likes it or not. He has become accustomed to laying on his floor to have it changed when we take him upstairs. We moved the changing table to Casey's room so the floor is all we have. He'll lay on the floor with his legs in the air and cry. He doesn't mind running around naked so we're not sure why he's crying. Is it a typical 2 year old thing, or is it an ASD thing?

Wish us luck!

I'm so dizzy, my head is spinning

There is just too my information to sort out. My head is full of facts, statistics, diets, therapies, ect. I have no idea where to begin the sort.
I belong to a parenting website, and on that website is a bulletin board for parents of autistic children. I find the board very useful, helpful, and supportive. That's where a lot of this information comes from. I try to stand clear of searching the web because it can bring about a lot of scary things and I frankly don't want to OD myself or Wesley.

A big topic on the board is a Gluten Free and Casein Free diet. It's pretty much eliminating all or most of both. Gluten is known to give bread dough it's elasticity and chewiness like in bagels. It's a undigested protein called a peptide which is like an opiate. Yup, like a drug. Casein is milk products like milk and cheese. Well this will certainly be a challenge since Wes's diet consists of pretty much bread products and dairy. I haven't done much research into it and we're still waiting to see a nutritionist before I start him on any strict diet. Taking these two things out of a childs diet is like going through detox. Autistic kids crave these things because of the "high" it make them feel. They go through withdrawls much like an addict.

The other is having his blood or hair or even urine tested for metals. Metals such as aluminum, lead, mercury, ect. We all ingest metals from the environment like in our foods and our body expels them in some way. Most kids with Autism hold these metals in which is thought to cause the delays most have. If the hair test shows low metals, it's probably because the body is holding those in. The best test is for a urine test. I've seen others say they went to a Naturopath for the urine test. I wouldn't even know where to begin finding one! I know my pediatrician won't help because he didn't believe me in the first place. I've looked in the phonebook with no luck.

The thing is, I'm not even certain these would help him. He's making great strides since we started therapy and even on his own. He's mimicking a lot more which is a great sign and even spontaneously using words. He's asking for help using his toys and the look of shear joy on his face when he does it on his own is priceless. We haven't started on the increase in therapy yet so maybe that is all he needs to boost himself.

Tim and I are discussing that I remain being a stay at home mom for awhile. I think it's for the best with all the added things going on. We are waiting to see if he gets this new position he's put in for and if he does, it will be easier for me to stay home. Right now I'm clipping coupons, family has been great with buying us some necessities for the kids and Casey is wearing all of Wes's hand-me-downs. I'd rather sacrifice the little things then watch someone else take care of my babies.

Just Deal

Today was a nice day so I wanted to get the boys (I have another son named Casey) out of the house for awhile. We've been cooped up due to snow storms, high winds, and extremely cold temperatures. Well my husband Tim and I packed up the kids and away we went. I've wanted to get Wesley used to walking without using the stroller. I have a double stroller but it's big and hard to maneuver when you have a 34lbs kid in the front and a 17lbs kid in the back. Well it started off well. Wes only whined a bit in the parking lot. It wasn't 5 minutes later that we were in a store and it started. Wesley wanted to run and not hold our hands. With a lot of fighting, he threw himself on the ground in a heap and screamed. A sales lady came up to us and tried to engage him in a toy that made sounds, but he would have none of it. He screamed even louder. I just smiled as I tried to pick my limp son off the floor. What could I have done? I didn't want to get upset because that only makes him more upset and he screams louder. I left my husband with our baby in the stroller and dragged Wesley out of the store. He continued to scream and continued to be limp. I looked up and saw all these faces looking at us. How mortifying! I dragged him around the corner and we ended up near a book store. Standing there was a nice lady who smiled at me. Tim was right behind me and I said "How many people are asking themselves why can't she control her son." The lady said "No one is saying that because they've all been through it." She walked over and tried to talk to Wes, but again, this only made him scream harder. I thought, should I tell her that he is Autistic and not just a horrible child or do I not have to explain this to every stranger. Some days when he's at his worst, I want to place a sticker on him that says "I'm Autistic" and one on me that says "I'm not a bad parent". Am I looking for their acceptance and approval? Maybe. I tell myself that I don't care what others think, but deep down, we all do. We all want to fit in, we want our kids to fit in, but there is a voice in the depths of our brains saying that we don't and they don't. Well at least in my brain it does.
That is the reason I hesitate to take Wesley in public alone. That's why I'm nervous about joining in a playgroup, or taking my son to a fun place. I know the tantrum is coming, I know that he's going to go off and play alone rather then with the other kids, and I know there will be stares. It's the life I've come to live with and just deal.

First Evaluation

On August 31, 2006, Wesley had an evaluation by Early Intervention. Neither Tim nor I knew what to expect. We were anxious to get started though. Two evaluators came and "played" with Wesley on the living room floor. Wesley did not seem very interested at first. After awhile he warmed up and played with a small variety of their toys. After a couple of hours, they came up with his level of development.

Cognitive: 12-14 months old
Social Emotional : 12-15 months
Gross Motor: 18-20 months
Fine Motor: 12 months
Communication: 12-14 months
Self Care: 18 months

Wesley was just 2 months shy of turning 2 at this point and as you can see, he was about a year behind in almost all the categories. This wasn't a surprise, but still came as a shock. I really didn't realize just how far behind he was. It's hard not to compare your child to others, but I could certainly see the difference between Wesley and the other 2 year olds we would meet at the park or at an indoor activity place. It would break my heart to see my son not doing normal 2 year old things. His behavior was certainly at a 2 year old level, or was it? Was it because he was frustrated that he couldn't communicate with us or was it because he couldn't have his way. Was it because we went off the routine, or was it because he was tired;hungry;thirsty;cranky. The only person who knows is Wesley and he can't tell us. That is the most disheartening of this whole thing. What is going on in that mind of his?

Where to start?

I guess starting at the beginning would be best right?

After three years of being unsuccessful at keeping a pregnancy, Wesley was conceived in February of 2004. It was one of the happiest moments in my life when that pregnancy stick showed two blue lines. I took three tests just to be sure. My husband, Tim was so excited to be a dad. My pregnancy was pretty normal. I had small bouts of morning sickness, aching back, and lots of cravings. I did develop gestational diabetes, but I was able to control it well with diet and insulin. Wesley was born on October 26, 2004 at 37 weeks gestation. My water broke on a Monday night at 10pm and by 12pm the following day, Wes was here. My labor was good and I didn't need any drugs until the end because I had stalled at 8cm. Wesley started to go into distress and needed forceps to help him out. He came out awfully blue but recovered well and spent a night in NICU.

He was always a very difficult baby. He wanted to be held all the time, and wouldn't sleep through the night until he was almost 6 months old and we had to "sleep train" him. He remained a difficult baby if we went off his routine, or there was too much going on around him. He seemed to be developing normally but I was a first time parent and didn't see the signs. Looking back, I now see those signs. Wesley made but never maintained eye contact and never babbled all that much. Sure he would make noises, but not always. He started to say some words by his first birthday, but by the time he turned 16-18 months, all those words seemed to disappear. He rarely made or maintained eye contact. He always played alone, even when I tried to play with him. He started having stimulations or stimming. He banged his head on the backs of couches and chairs, he would flap his arms, spin anything he could, and would spin around or circle around objects. He still wasn't talking, but could sing any song verbatum after only hearing it a couple of times. I took him numerous times to his Pediatrician only to be told he was fine and everything he was doing was normal. Deep down, I knew there was an underlying issue, but trusted his doctor more then my instincts.

When Wesley turned about 20 months and still wasn't conversing with us, I decided to look elsewhere. I called Early Intervention and got him started in therapy and consulted a Developmental Pediatrician to evaluate him for Autism. Deep in my soul, I knew he was on the Spectrum for Autism.

February 9, 2006 we were given Wesley's diagnosis. He did indeed show signs of having Autism Spectrum Disorder or ASD. We aren't sure exactly where he is on the spectrum because most kids aren't really diagnosed until they are 3. I've seen great improvements with his attention span and vocabulary since he started therapy. With this diagnosis, we are able to get him even more therapy and sessions with a behavioralist. I am seeking therapy called Applied Behavior Analasys which has been known to "cure" ASD even though there is no actual cure as of yet.

I long for the day that Wesley looks into my eyes and says "I love you Mommy" unprompted and totally of his own free will. For now, I'll take him repeating "I love you" when I say it. It melts my heart when he runs up to me and jumps in my lap for loves and kisses. He will always be my beautiful green eyed boy (or stinky butt). No diagnosis will ever change how much I love him and how greatful I am that he's in my life. It's a very difficult road ahead of us, but one that with love, support, and dedication, we'll make through.

I wanted to start this blog to not only help myself with my feelings of having a child with ASD, but as an opportunity to remember that if I can make it past this, I can make it past the rest.