The Holidays

Holidays can be hard on Landon.  There are so many changes in the day to day routine of things, it is so busy and hectic too.  All things which can "set him off".

This is true for any holiday, not just Christmas and New Year's.

This year has been OK.  No major meltdowns.  I can just tell he is "out of sorts".  No school, not as much structure, therapy sessions cancelled due to holidays, etc...all of those changes make him anxious and feeling the need to control as much as he can so he gets kind of bossy, whiny and emotional.

I do feel bad for him.  I wish I knew what was going on in his head so I could help him better.  He seems to be regressing some in his behavior.  More mini-tantrums, more stuttering when he is talking, becoming obsessed with a certain activity or object.  I try to keep things as calm as I can and as predictable, but that is so hard.  I can't revolve everything we do around Landon's needs, but that seems to be what happens anyway.  I try not to look at it that way and to explain it the other kids too.  Many of the choices I make aren't to keep them from something but to keep ALL of them from having to deal with a MAJOR meltdown, or something embarrassing happening that I could've prevented.  We do go out in public, to shop, restaurants, but they are short visits, so as not to overdo it for Landon and for my 3 year old as well.  No one will be having a good time with a cranky 3 year old! and is autism-diagnosed brother!  I just hope they see it that way.  We do try do things with just our older two kids from time to time, where there aren't as many restrictions or rules, just something a little more "normal".  I both love and hate that word....."NORMAL"......what does that mean 

anyway?????  I long to have a normal family, but I also hate that I feel like I need to fit some picture in most people's head of what is normal and what is not.  We should all be loved, respected and treated the same no matter what our differences are.  

Yes, my son can be difficult, and hard to deal with.  He can throw tantrums still at age 8, for no apparent reason.  We usually figure out the "why" later.  He can be obsessive about things, asking to many questions, standing too close when he talks, he is a messy eater, he has a hard time with changes, and gets anxious in new situations, but he has not committed any crime or hurt anyone.....but it seems some criminals are more accepted in society than a child with a diagnosis of autism.  I will not be ashamed of my son, nor will I allow my other children to be.  I may be ashamed of his behavior, but that just means I have to work harder at correcting that in him, or teaching him what is appropriate......it doesn't mean I will hide him away, or lock him up, after all he hasn't broken any laws.

Plus I also feel bad for my other children.  They have to put up with all of this as well.  I hope they have enjoyed their Christmas.  We are trying to think of something fun to do for New Year's.

Holidays are hard for me too.  Greg doesn't say much, so I don't know about him.  It seems like in the past year or so, it has become more and more apparent to me just how different Landon is from his same age peers.  I wish I could change that.  It hurts that he can't do so many of the things his classmates do, and I can tell he wants to, and I wish I could find a way to help him.

We got the kids a Wii for Christmas.  He has tried so hard to play it, but he just can't do it.  Partly it has to do with his fine motor skills and also with the visual tracking problem he has.

I need to start doing those exercises the eye doctor recommended to strengthen his eye muscles, but it seems like before I know it the day is gone and we have been busy the whole time.  I have got to find time to squeeze those in.  I want to be able to take him back to the optometrist and show that he has improved and that I did actually do them with him.  The people at the doctors offices didn't seem to think that I would.  Kind of weird, I know, but that is the impression I got.

Christmas and Birthdays are especially hard, because Landon doesn't really play with anything.  So, it is ver hard to buy gifts for him.  My other kids are happily playing with their new gifts and he seems not to know what to do with most of his.  It is sad really.  He tries to do things like his older brother, but much of it is so hard for him.  I can tell he wants to.  I just don't know how to help him.  He seems to get frustrated with himself so easy.  I wonder if he is beginning to realize he is "different"???   I have read that it happens around this age.

We have had some happy moments too.  Christmas morning was fun,  my other children were definitely surprised by the Wii, it was not expected.  Plus we were just able to give them a bit better Christmas than the past few years since Greg is now working more steadily.

I just wish I could give them a Christmas free of meltdowns, special diets, supplements and autism.  That would be the best Christmas of all....well, gotta go, Landon put a magnet down the toilet!  That's a new one.

Anger and Depression

Those are two kind of big and scary words.

I struggle with both.  

I am angry, mostly at myself, because I feel like I missed so many obvious signs of what was going on around me, whether it be with Landon or other areas of my life, marriage, kids, etc....

I get angry because it is hard to find someone who understands the unique position I am in, or that of the rest of my family.  We are all, to some degree, struggling to handle some unique problems.

I feel, as the mom, I should be emotionally available to them to help them with whatever, whenever and also be "tuned in" to what is going on with them.

I have to admit, I have so much of my own emotional ups and downs, that I feel I am letting my family down most of the time.

I also get angry at the unfairness of it all.  I am like, "OK,  I chose to have children, so whatever I get is what I deal with, fine....but my kids, they didn't choose to have a brother who has autism and a mother who is really still struggling to come to terms with that and other issues.  They didn't choose this."  It is really unfair to them, I want things to be as fair as possible, so I try to make up for some of it, even if it is in just some small way.

So, I feel horrible that they miss out on stuff and sometimes I am the cause of that.

The guilt I feel over some things is almost unbearable at times.  I fear that I am not doing a good enough job to prepare them for life and the pursuit of their dreams, whatever those may be.

I suppose every mother worries about that.

I also get angry because most people in my life don't seem to understand that so much of what has happened to me has been completely out of my control.  I did not choose to have certain events in my life take place and I don't believe, at this time, that I did anything to cause them or bring them about by some indirect means.  There have been several significant, emotional "disasters" in my life, that may be a bit too dramatic of a word, but maybe not.  They were pretty bad.  I have had major emotional responses and reactions to those events and have not had anyone to help me deal with them.  The only advice I have received is to "just do the right thing"...problem is, I am not really sure what that is.  The other advice I have received is "to just snap out of it"....that's my favorite, I wish someone would please tell me how to do that.   It is hard to "snap" out of something that you keep getting reminded of over and over again.

Depression, they say is "anger turned inwards"...I don't know about that, I just know that at times, I feel an almost unbearable sadness and it is about so many, many things.  Most of it has to do with what things may or may not happen for my children, things they won't get to do or haven't got to do, and some of it is for me.  About things I may not get to do, or have missed out on.

So, I do my best to deal with these times, when it all seems to come crashing down on me and weighing me down.  That is happening right now, during the holidays, no less.

I am not dealing with it very well.  I am trying.  I would like to have someone to talk to, but right now there isn't anyone.  I am trying to find someone I can discuss my feelings and emotions with.  I am hoping that if  I do, then they won't seem to so overwhelming to me.

I am also hoping that it will help me to help my kids.  I want them to be as emotionally healthy as possible.

Landon has been "on" and "off" lately, some days are good, some are kind of bad.  I think he is trying to adjust to all the changes around here lately.  They are temporary, the tree, decorations, etc...but changes for him none the less.  I try to support him the best I can, but it gets tiring and exhausting, especially when no one is supporting me.  I don't feel like I have much of anything left for anyone or anything else.  I also can't help but think, that he is responding to my state of emotions as well.  He may be more sensitive than I know.

No, I am not intending to be a big baby about all of it.  I do what I have to do.  It's just like most people, I need a break once in a while and I don't get it.  I feel like I always have to be "ON" and on top of things and it is exhausting!!!!  

So, I guess this is my "vent" for the day.  It helps to type it all out.  I can give myself the necessary "kick in the butt"  and get back to it, sooner or later.

Have a Merry Christmas!

The School Years

So, Landon has gone through 1/2 year of pre-k, one full year of pre-K, plus Kindergarten in a therapeutic classroom, 1st grade and now we are half-way through our second grade year.  All with the Evansville-Vanderburgh School Corporation: Special Education Department.

Let's see what does Landon know, academically speaking....hmmmmmmm.

He can write his first name, that was accomplished at some point LAST year.

He can sometimes count to 10, every once in a while he can count to 20.

He knows all his colors, but he only achieved that sometime last year as well.

He knows all his letters, but there are still a few he gets mixed up.

He can read some sight words, however he is still inconsistent with them.

He cannot say the days of the week, even though that has been a goal on his IEP.

He cannot say the months of the year, that has also been a goal on the IEP.

He still has trouble pointing and counting, they call this "one to one correspondence", he will just keep going even though there aren't as many objects there as he is counting.

I could go on and on, but I think you all get the idea.  I always ask "What happens when he doesn't meet a goal for this year?"....well, it usually just gets carried over to the next year, but in my son's case it just keeps getting carried over and over and over and over..................

By law, I should be able to expect a year's worth of progress for a year's worth of work.  

BUT, the school system gets out of this one by "reminding" me of his secondary diagnosis of "mild mental retardation".....in my opinion.

B*L#S@I&!!!!!!!!!!  That's what I say to that!  Sorry to be so unladylike, but I have had ENOUGH of this school corporation putting limitations on my son's abilities....they, BY LAW, actually have no right to do that.

Besides, as I mentioned before, he is NOT mentally retarded, not mildly or in any other way.

Landon's skill development is UNEVEN, he is closer to age level in some things and farther behind in others, it is my understanding that a mentally retarded individual reaches a certain level in ALL things, that is they sort of  "top out".....if their mental age is that of a 5 year old, then all skills would match that of a five year old.

Landon's skills are age-appropriate in some areas and behind in others.  Some of his fine motor skills problems keep him from writing like a "normal" 8 year old, but you can tell he KNOWS what he needs to write, but he is having trouble making the muscles in his hands do what he wants them to do,  he KNOWS when he is wrong and does correct himself.

Landon also has manipulation skills, he is a smart little guy, he will try to trick you into doing something for him without you knowing it.  It is my understanding that mentally retarded persons do not have that ability, that manipulation is a higher thinking process.

Landon's brain just works differently from mine, or yours, or the guy next door.  I do not fully understand it, but it has been described as being a mental filing cabinet or like computer files and when asked a question or to perform a task, the person with autism has to "go through their files" to find the answer or the set of skills needed to do the task, and that takes time.  Many of them have auditory processing disorders, which is not mental retardation, it is a difference in the way they process verbal information.

I have nothing against anyone who has been diagnosed with mental retardation, in my opinion, ALL person with disabilities are significantly underestimated in regards to what they have to contribute to our society.  All persons, no matter what their diagnosis, are deserving of love, respect, kindness and to be helped to reach their full potential whatever that may be.

I am just simply sick and tired of the situation I find myself in, my son and our family.  Our battle with the EVSC, to get them raise their expectation of him, to provide more visual prompts, schedules and aides, to also provide him with a personal aide....has exhausted us at times, and caused unnecessary stress and emotional pain.  

It is bad enough that the autism my son has to deal with robs him of a normal life, but it also robs this family of many "normal" things that families do, the last thing we need to do is deal with a school corporation that has little interest in doing for my son what they are required by law to do and who also has no empathy for the parents involved.

I have had one person, with the EVSC, tell me that they are "very much an advocate for the children, but I have to watch what I say".....what kind of school corporation won't let a teacher, therapist or other individual involved in the case of a special education student NOT speak up and say "This child needs _________(fill in the blank)"!!!!!

That is just not right!

It is only my opinion, but I believe the EVSC is more concerned with NOT giving special education students what they need in order to succeed.  Also, my opinion is that they do not see the potential being lost with these children, nor do they value their success.  I think that, overall, they have extremely low expectations of these children.  Children pick up on that, and that could have so much to do with why they are not achieving what they are capable of.  

Children need for all the adults in their lives to believe in them.

As educators, they should be concerned when ANY student does not meet expectations, and be concerned that their is something THEY are not doing right.  For many of these kids, simply changing the METHOD in which they are being taught can make a HUGE difference in the outcome, but I don't think the EVSC realizes that.

 I believe they have convinced themselves, that there is nothing wrong with the WAY they are teaching theses kids, it is the child's fault for not learning.  That is a simplistic way of putting it, but you get the picture.

The EVSC needs to revamp their special education department.  

There is going to be a TIDAL WAVE of children on the autism spectrum coming this way, and they aren't even prepared to deal with the ones we have, what makes them possibly think they can deal with more?

It is way past time they became proactive and stopped sticking their heads in the sand.

Autism is growing, and it is here in Evansville in much bigger numbers than anyone realizes.

  My personal opinion: there are older adults, young adults, teens, school age children and toddlers who have been wrongly diagnosed.  They have been diagnosed with every other disorder, which may be displayed in small degrees, which if the doctor or professional would be honest with themselves, and look at the WHOLE picture, instead of the parts, the child is AUTISTIC, 

not OCD/ bipolar/ ODD/ anxiety disorder/ SID/ADD or ADHD, etc......

The kids in Evansville need help.  I hope to be one individual, along with others that helps them get it.

Oops! a little correction...

In my previous post, I made the comment that I didn't think anyone employed by the EVSC should "drive a fancy car, such as a Lexus...."

Should a person employed by the EVSC be able to afford such a car on their own dime that is fine. However, I do object to the use of school corporation funds being used to buy or lease such vehicles for anyone employed by the EVSC. The children deserve a better education, smaller class size, more support staff and accommodations. Bonuses, if given, should be given to a school for perhaps making improvements, or achieving higher test scores. But this is just my opinion, I do not know that this happens for a fact, but I have heard rumors...so again, this is JUST MY OPINION on the matter.

Time for School....

So now, here we are. Landon is going into a therapeutic pre-school. We had to develop an IEP, that is basically just an "instruction" sheet for the teacher to let him/ her know what the child is behind in, and where they need to be, how they are going to get there and by when.

This first one was easy, it wasn't until I started voicing my opinion to the EVSC that things went bad.

A few months after Landon started pre-K I was watching a Good Morning America segment on something called Asperger's Syndrome, they described it as a form of autism. I didn't know anything about autism, just a brief description of it in a high school psychology book, and of course from the movie "Rainman"....what I knew from those two sources was not my son.

There had been a person from EVSC early childhood department come to our home to evaluate Landon and she suggested PDD...we didn't know what that meant, she said it might mean autism...I said, "No, he doesn't have autism" She never bothered to explain to me WHY she thought my son was PDD or ASD or anything..she didn't point out to me the oh so obvious signs that were staring me in the face and I didn't want to see them.

So, as I sat watching GMA, they were describing Asperger's and Autism Spectrum Disorders....it sounded like they were describing my son. My really beautiful brown-eyed boy. So, I started searching the internet for more info and every website with every checklist...I checked off the signs he was displaying...he had most of them to some degree or another.

It was devastating, it was sad, it was heartbreaking. I thought to myself, "How did you miss this, Lori?....how could you not know this?....what am I gonna do?"

I started researching. I waited until our next Case Conference meeting and I bring up the fact that I believe Landon is autistic. (I now know that I have the right to call a Case conference ANYTIME I want.)

The whole table of people sitting there...Disagreed with me. Even though just a few months earlier, stated in a report from the social worker from EVSC...there it was in black and white...."Possible PDD" and a list of symptoms. For those who don't know, PDD is Pervasive Developmental Disorder, it is basically just an umbrella term for all the types of autism.

From then on, things turned into a battle, It took me 2 years to get them to accept the diagnosis of autism as Landon's primary diagnosis, and they still want to continue to hold onto the diagnosis of Mild Mental disability as a secondary diagnosis.

My son is NOT mentally retarded, not even a little.

As every mother knows, we know our children best, even better than their fathers. The EVSC does not acknowledge that fact, even though in IDEA law it says that "parents bring a unique knowledge and perspective of their child as being the only person to have known this child for such a long period of time"....or something very close to that. Yet, this school corporation engages in bullying, manipulating and ignoring the true needs of the child, all because the don't want to spend the money, that is just MY OPINION>

Just as it is my OPINION that there is no need for any of these people employed in any capacity by the EVSC to be driving fancy cars, such as a Lexus or receiving a bonus! or having any other perks, not until you do your job and do it correctly, this is just my opinion. I have only met a few teachers that I would love to hang a big medal on because the pride they take in their job as a teacher is very evident. However, again, just my opinion...many, many teachers get discouraged by the lack of support coming from the school corporation they work for.

A bonus is received for a job well done, and in this mom's opinion, the job they do is anything but well done. I have yet to meet a parent that has not had to put up some kind of monumental fight to get what their child NEEDS and is ENTITLED to under the FEDERAL LAW...many either give up, which is just what they want us to do, or they hire lawyers...they spend what little money they have just to make sure their child has what they should be eagerly provided with in the first place.

In anything you read about autism, it will say that they are visual learners and the use of visual aids, pictures, symbols can SIGNIFICANTLY aid the child in learning, reduce behaviors, and reduce anxiety...yet the EVSC does not routinely provide a child with autism with these accommodations, they have to be fought for and bargained for....the education of any child is not the time for bargaining and compromise. The federal law does not say the IEP is to be based on a set of compromises and deals, but on the UNIQUE NEEDS OF THE CHILD!

I have been told to PROVE he needs this or that, his DIAGNOSIS proves the NEED< how hard is it to figure that out? It is just plain old common sense, if you ask me...you don't ask a carpenter to prove he needs a hammer, you just know he needs a hammer or you don't ask a doctor to prove he needs a stethoscope, EVERYONE KNOWS he needs one!!

Anyone who knows ANYTHING about autism knows they need visual aides, for tasks to be broken down and taught in small steps and repetition in order to learn. It is simply a different learning style.

It seems to me that the school corporation has lost sight of what its mission is, and what the responsibility is of the school and its educators. I get the impression that there is way too much concern for the teachers and not enough for the children and then the parents. This is especially true if you have a child in special education. I hear things like,

"We/I don't have the time." (this is actually illegal, it is not about their time, it is about the child's needs and what is in the IEP which by law they are required to follow)

"We are doing the best we can" (Really? Many schools in the state of Indiana are doing a FAR better job, what's your excuse? Many of them do it on a smaller budget too.)


I just don't understand the overall attitude of the EVSC. I am hoping that Dr. Bertram will make some positive changes, and not just for the general education population, but for ALL the students enrolled in the EVSC.

For now, this mom is hiring a lawyer.


I would like to state that the statements made in entry of this blog is just this mom's opinions and feelings on the matters I am writing about. I do not base these statement on facts, only on what my impression is.

To Continue with Our Story....

For most of Landon's life, we have been unable to do much outside of our home, outings like going to the mall, a movie, a restaurant, a park....just the normal everyday stuff that families do was out of the question.  Landon's behavior kept us from doing most of this.  He would have tantrums, and most of the time we didn't even know what about.  He was into literally EVERYTHING anywhere we took him.....he has had petroleum jelly ALL OVER him, a huge powdered sugar mess in the kitchen, gallons of spilled liquids such as Sweet Tea, Lemonade, Apple Juice....including straight from the pitcher or the bottle from the store and cups and cups of the same stuff.  He had difficulty eating, missing his mouth so a LOT of dropped food, enough to feed another child or more.   He would break things easily, he just didn't know how to be gentle, it was a foreign concept to him.  So many locks, gates and other barricades to forbidden objects, food or toys.  Looking back, it was like he was from another country and did not know our customs or ways of doing things.

His older siblings would get very frustrated by all of this, the lack of any social outings or playdates (it was a disaster anytime a friend came over to play).  They, of course, disliked having their toys broken, or a drink spilled.  I KNOW that the first 5 or so years of Landon's life was hard on my two older children.  They missed out so much, and I regret that and if I could go back and change that for them I would.  I was so lost in a world of unchartered territory.  

Shortly, after having Landon in the fall of 1999, I was diagnosed with Post-Partum Depression. 

For a while, I blamed myself for the lack of connection between myself and my new baby, and my inability to comfort, soothe or make him happy or even know what was wrong.  For the most part, I know that my PPD did not cause Landon's autism, more likely the autism that took over my little boy had something to do with my PPD, that and hormones, and my feelings of inadequacy as a mother.  I thought I had failed in so many ways, or done something wrong in life to deserve this punishment.  I now know that God was not punishing me, nor did He cause the autism in Landon.  I do know that God will help me through this, without His help, I couldn't do this.

I struggled with the depression on and off until 2002/early 2003.  I NEEDED desperately to find out what was wrong with my little boy and what I needed to do to HELP him feel better and be happy. 

As I already mentioned, Landon had RSV very early in life and from then on struggled with ear infections, and other types of infections.  Also, during this time he would have a lot of abdominal pain, severe gas and bloating...he would just be lying there and then all of a sudden arch his back and start crying...it broke my heart.  I did not know then to look at what he was eating as the source of this pain and discomfort.  He did not have cow's milk for the first few years, we thought that would help, but he still had problems.  He was always constipated, had been since a little baby.  Sometimes it would be 3-4 days between bm's and as he got older, that got longer, going up to 7-10 days, the longest so far has been 2 weeks without a bm.  I limited his milk, forced fluids, and veggies, more fiber, but nothing seemed to help.  He also had allergies to eggs and peaches.

So, along with the frequent illnesses, stomach pains/constipation........Landon was also very clumsy.  He seemed to be unaware of walls, steps, or sometimes even the floor.  He would fall down so easily and get a bruise. Or run into the doorway and get a bump on the head.  He fell down a lot just from walking, he would just trip over nothing.  I can't count how many times he fell down one of the two flights of stairs in our home, you could be right there walking with him and he would be doing fine and then in a split second down he would go.  He would either bump his head, scrape a knee or his back.   Many, many times he didn't even cry.  I never knew if he was seriously hurt or not.  I took him to the ER many times just to make sure.  

Every time, I was terrified that they would think I was a bad mother, or had done this to my son.  I lived in fear, and to some extent, still do that someone will think he is abused.  He is better coordinated now, but he still has more bumps, bruises and scrapes than most kids his age.  He is still clumsy and awkward.

I struggle to keep my house clean and in order, just in case CPS shows up at my door.   I document all the more serious mishaps with trips to the ER or calls to the doctor.  

Having a brother who has autism is difficult for my older children, but I think more so for my oldest boy.  He and Landon are only 2 years apart.  I think Luke wanted to have a brother that he could call friend and buddy.  It is hard for him because Landon doesn't and for now, can't play the way other boys his age do.  He has never had age appropriate play skills.  He would bang on stuff to make noise, or wander around the house looking for something to get into, or just wander aimlessly when he was very young.  Very soon, we noticed he had limited interests.  He liked to flip light switches up and down.  He liked to line up cars.  He seemed to not have any clue as to how to play with toys, even if you showed him how, he would just get frustrated easily.  He would not wave, point at objects of interest, and he wasn't talking.

At the age of 3, he had about 10 single words, if that many.  He "communicated" by screaming or pulling you to what he wanted or he just tried to get it himself.  Landon also did this thing we called "flying south for the winter"...he would flap his hands quickly and repeatedly.  We did not know then that was a classic sign of autism, nor did we know that his limited interests, lining up cars, not waving, or pointing were also classic signs as well.

Many people have said..."Why didn't your pediatrician say anything?"  That's because I never mentioned most of this stuff to him, I thought he just like lights, or cars and that it was cute and somehow "advanced" that he would line them up.  We thought the flapping of the hands was just that, flapping and getting excited.  We thought his speech delay was somewhat normal for a boy, who tend to develop slower than girls and also because he had two older siblings who did a lot of talking "for" him.   We also thought that when he got tubes put in his ears at age 2, and the doctor said "they were full of fluid" that was the reason he wasn't talking.  She said having that much fluid in a person's ears would definitely delay speech and make sounds seem muffled.

So, we thought, ok, here we go....he'll start talking!!!  That did NOT happen.  So, by about age 3, we had to admit he had a problem.  That was a very hard thing to do, it was like admitting I had failed as a mother, failed to help him learn, failed to recognize the problems, failed to FIX IT!

We took him for an evaluation shortly after he turned 3.  He was diagnosed with developmental delays,  (*special note of :probable ADHD").  This made me angry.  I knew enough about the so-called ADHD epidemic that it is usually diagnosed in SCHOOL AGE children, and also knew that a 3 year old did not usually have a long attention span.

He was recommended for a pyschological evaluation, but we opted not to do that.  That word scared the hell out of me......((((((PSYCHOLOGICAL))))))........makes it sounds like your kid belongs in a mental institution or something.   No one bothered to explain anything to us about what this involved, if they had done that, we probably would've done it then, and been able to get him early intervention for autism.

He did get Speech, Occupational and Physical therapy.  This also scared the hell out of me.  I thought "OK, speech therapy, obviously, he's not talking, but why all this other stuff?"  I had to read through all the results of the evaluation and do research to find out why, the evaluator was not too willing to answer my questions, the few I had, and I guess she didn't pick up on the fact that she was dealing with a mom who was scared out of her mind and needed some reassurance that this was not her fault!

Landon had some pretty serious delays in all these areas.  He was 3y and 2m old at the time of the first evaluation, he tested almost 2y behind in all areas.  

However, he did pick up speech rather quickly and well.  He now talks your ears off, even though for the most part, it is still somewhat immature.  He has also progressed in the fine and gross motor skills, although more so in gross motor skills, than fine motor.  Printing, and other skills that need to be done with the hands or fingers are still difficult for him, but we believe he will get better.

By the time he had been in all these various therapies for a few months, we wanted to put him in preschool, but knew he would not be able to go to a "regular" preschool.  He was still not potty-trained by 3 1/2 and showed NO signs of interest or capability.  His speech therapist told me they had a therapeutic pre-K, through the local school system, but he would have to have the psych eval done to see if he qualified.  So...we had that done.

We thought having this done and getting him into the therapeutic pre-k, continuing with his various therapies would be of great help to Landon...FINALLY, professionals who could help him to LEARN like other kids....we couldn't have been more wrong!

To be continued.......

Am I to Blame?

I plan on continuing to tell our story, picking up where my first post left off, but I am having trouble sleeping tonight and thought that writing about it might help me to "let it go" and get some sleep!  Lord knows, I need it! LOL!

Anyway, here it goes....

My son, the one diagnosed with autism, earns happy faces and sad faces depending on his behavior during each class period at school.  This is not a perfect system, but I was trying to keep it simple for the teachers and therapists so it didn't take up too much of "their valuable time"...as if my time somehow isn't valuable.  Don't get me wrong, good teachers are valuable and so is their time, but good teachers not only respect the children they are teaching but the parents as well and should also have respect for the position they hold.  Sadly, I find that many teachers are lacking in this.

So......Wednesday of this week he comes home with his behavior chart and he has a sad face on it for gym class.  This is what it said:

"Would not sit down-kept bothering chairs on stage-Took about 15 min individual time which was 15 minutes none of the others got gym"

Well......this remark made me angry to say the least, and I called the school to talk to the principal right away, but she was busy and still has not returned my call.

I had my daughter read it, just said "Here, read this and tell me what you think."  She did and says, "That sounds kind of smart-alecky to me."  and I should add, that since she is a teenager, the fact that she agreed with me, even though she did not know what I thought at that time, was a small miracle...Halleluah!  (sp?)

We have been going through the process of having Case Conference Committee meetings to develop an  IEP for my son for......hmmmmm.........5 years now.  These are meetings you have to have in order to determine what services a child with special needs get while in school and trust me they are not for the weak....we have had 2 that lasted 7 hours, at the minimum they last 2 hours.  Grueling to say the least.

I have asked for, and been turned down, an aide for my son, extra one on one attention for problem areas, asked that social skills be addressed at an early age, so as to help prevent some of the problems that can come when a child with autism does NOT receive any social skills instruction....always told no.

So, it is no surprise to me that he is having social and behavioral problems.  I tried to prepare them for this, but they, the school did not want to listen.

But now, they want to blame me for his difficulty...or so it seems to me anyway.

I have literally given up weeks of my life, not all at once, to research how to best help my son, tried things with him to see what worked and didn't......and they do not want to benefit from my knowledge....WHY!  

I'll tell you why, because I don't have a DEGREE...which puts letters behind my name.

This remark from this teacher, really hurt my feelings and I have been feeling down lately, partly because of that and also because of my husband's recent insensitivity (that would be a whole other blog, so I won't go into detail too much).  My philosophy with Landon has been that we don't have to accept the prognosis for his life, we should change what we can, accept what we can't and ALWAYS hope for and PRAY for the very best.  My dear, sweet husband wants us to be able to things like other couples, and bless his heart, he seems unwilling to accept the fact that, for now, we can't.  He travels for his work and frequently on the trips back home, he might stop in Nashville, or someplace that is only a couple of hours away from home.  He has asked me several times to "find a sitter for the kids and come join him in the hotel and we can drive home together the next day"....the first time he did this, I explained to him why we couldn't....

The main reason being that we have NO ONE that can watch and take care of  our son that is autistic.   I accept this, don't like it, but I accept it.

So, when he asked me yet again, for the 4th time.....it only made me more aware of just how crappy my life is.....never mind not being able to just pick up and take off to meet my hubby in a hotel, but planning a date can be like planning a war maneuver!  

So, this along with the note from his teacher has sent me into a temporary mini-depression.  I hate it when I am like this, I don't get anything done.  I just want to sit on the couch and eat ice cream and watch movies.

But there is not rest for an autti-mom....that's a new term I just came up with....maybe it'll catch on like "metrosexual"  LOL!

The autti-moms are always on the go, if your child is toddler, you don't sit down, NOT EVER!  I know, I know all toddlers are busy, but an autistic toddler is like having 4, no 6 three years olds all at once and you are the ONLY ADULT!   They are always sensory seeking..so you are on your toes constantly, and then they don't sleep well, so you don't sleep well.  I'm talking frequent night wakings for years....and if you don't hear them, then they are into something while you are sleeping, so you have locks on all the cabinets, I still do, special locks on the doors, etc...  As a mom, you are in a constant "flight or fight" mode, much like they are as well.

There will be more on this later.  As my son has gotten older, he is still very active, but now we have the added therapy appointments, doctors appointments, and medications or supplements, and then just all the other more normal stuff you do for any kid.  

I have gotten waaaaayyyyy off topic here, haven't I?   Sorry,  I tend to do that, and I also tend to ramble, comes from not being able to have adult conversation most of the time.

I will have to work on that...wait a minute....no I don't...this is my blog, I can get off topic and ramble as much as I want!  Coooooool!

So, I have sent a long email to my son's principal about this insensitive remark and asked her to share it with the rest of the teachers, therapist, etc....  We'll see what happens tomorrow.

Good Night!

My First Post

My frustration with everything in my life has led me to start this blog, purely as a way to help relieve some of the daily stress.  I hope that it will help to put things in perspective.  Often I find that writing things down, talking about them, etc...helps me to see things differently and jerk me out of my doldrums.

I have 4 children.  My daughter is 14, and a truly great child.  She is very smart, gifted in fact.  She also has talents in music, art and singing.  She is very loving and kind, most of the time, after all she is the oldest of 4 and has 3 younger brothers to contend with.  So, all in all, I think she does pretty well.

My second child, also my oldest son, is 10.  He is very physically strong, and athletic.  He likes to race BMX bicycles, play football and baseball.  He enjoys most being outside and even enjoys doing hard work, like mowing grass, putting things together, anything physically challenging.  Luke struggles in school, not because he isn't smart, but because he finds it boring.  I think he struggles with some attention problems and low self esteem.  

My fourth child, and yes I know I am going out of order...there is a reason for that and I'll get to it in a minute.  My fourth child is 3.  He is such a happy guy and also extremely smart, he seems to be the combination of my first two children, very intelligent but also athletic and strong.  He loves to watch cartoons, play with cars, trucks....all things boy.  He also has been diagnosed with some mild asthma.

Now, for my third child, the middle boy.  He just turned 8 and was diagnosed with autism at age 5, finally!  I say finally, because we knew for 2 years before that he was autistic, but none of the doctors we took him to locally would listen to us.  He was a challenging baby from the start, and by start I mean pregnancy.  From worries that I was miscarrying in the first trimester, to heartburn, and extreme feelings of tiredness (even worse than I experienced with his younger brother at a much older age).  His movements in the womb were strange, very forceful and many times hurting me.  At 36 weeks, some pre-term labor.  His labor and delivery was the easiest part of the whole pregnancy, he came quickly with very little pushing.

But, he was unhappy from the beginning, covered in red splotches and white bumps, he was very skinny and long with very poor muscle tone, even for a newborn.  He was difficult to soothe, needing constant attention, which in turn caused his then 2yr old older brother to go without attention.

As an infant, he was still challenging...colicky, didn't sleep well, food allergies.  He very rarely seemed to content and always hit his milestones on the very low end of normal, just coming in under the radar.

When he was just about 5 weeks old, on New Year's day 2000, I called his primary care doc because he was having great difficulty breathing.  I took him to the hospital where he was diagnosed with RSV, typical of premature infants, but yet my son had it.  He was in the hospital for a week.  From that point on, we battled frequent ear infections, upper respiratory infections, bronchiolitis, just to name a few.....then in February of 2001, he was back in the hospital for another week, this time with chronic vomiting and diarrhea of which we still don't know the cause, but I suspect food allergies.  At age 2 he got tubes in his ears, which helped with the ear infections, he only had 2 after that.  By now, it was apparent that his behavior up until that point wasn't due to his frequent illnesses, but was something else.

He got evaluated at age 3, he had severe expressive and receptive speech delays, as well as delay in gross and fine motor skills.  His attention span was typical for a 3 year old, he did make attempts to explore his world, but he was awkward, bumping and falling down a lot.  (I now know that this is because of the assault on his vestibular system from all the ear infections)

I now knew, that this brown-eyed boy had some pretty bad problems.  What I didn't know and could not possibly prepare myself for was how this was going to change my life and the life of my family.