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.......