It’s almost every mother’s opinion that SHE has the perfect child, I’m no different. Only my perfect child has a few catches to him. Just some things that make even the smallest progresses that much more special..... my child, my son, has PDD and ADHD.
Before the Diagnosis
My pregnancy was no different than most, and the birth was a relatively easy one. Matt was born the oldest of a set of b/g twins - they were full term, no complications during birth, both were beautiful healthy babies, both 19 inches long - Matt weighed in at 5 lb. 14 oz and Rachel at 5 lb. 10 1/2 oz - they were perfect.
Matt grew into a very happy and loving toddler - always smiling and laughing. Constantly charming people he met - with his curly blonde hair and big blue eyes that were hidden beneath thick, dark lashes, and his contagious laugh and playful antics.
I guess he was about 18 months when we started to suspect he might be ADHD, though actually admitting it was something else. He just seemed to have a harder time listening and focusing than his sister or other kids, and the energy he had - he didn’t stop...... EVER! I couldn’t leave him alone for a second! If I turned my back on him he would find a way to get to things that my husband and I were positive that we had put away in such a safe place, in such a way, that it was completely child safe. I know that there is really no such words when dealing with children... Well, Matt was the one who always showed us that there WAS a way to get to them.
Then there was his amazing ability to “tune us out”. I can remember sneaking up behind him and screaming his name or banging on something just trying to see if he could hear me. Did he? Sometimes - I just couldn’t understand it If he was tuning us out, how could he not even blink when all of a sudden there was such a loud, unexpected noise?
But there were also other things about Matthew that concerned us - things that were only now showing up and things yet to come; things that would turn our lives upside down and break our hearts like nothing we had ever experienced before.
“The Signs” and the “Denial”
Let me start this by saying that over the years, I’ve come to believe that denial is a “safety catch” for our sanity. I feel that it’s our brains saying “this person CAN NOT deal with this right now” so it allows us to not recognize, not admit, not believe the truth or what could be the truth, until we are capable of dealing and not falling over the edge. I’m not saying it’s a good thing, but sometimes it’s a necessary thing.
One of my biggest wishes was that we had had the strength to get help for Matt the moment we thought something may have been different, because now I understand that being autistic isn’t the end of the world, and the earlier you get help the easier it is for everyone.
By the time he was 2, we were so sure something was different about our son. But we chose to believe everyone else who kept telling us that he was just a normal, active little boy. “Boys are always more mischievous than little girls.“ is what they told us. In a lot of cases, this may be true, but in our case.... As I said, we CHOSE to listen to these people, even though his activity levels were higher, he was having even more trouble paying attention, and he wasn’t even able to look people in the eyes anymore. It was just so much easier for us to deny - what we knew was true - than to admit to ourselves that our son was anything other than “perfect”.
This was also the year other things started to happen.... the violent acts began about this time. When you are dealing with others getting hurt, you have to stop the acts first, THEN look at why they are happening. For example, every morning Matthew would go wake up Rachel - nothing out of the ordinary there - except the way he did it that upset us so much. His method of waking her up each morning was to either LITERALLY pull out a handful of her hair or to bash her in the face/head with a tonka truck or any other hard item he could find! This was a terrifying time for everyone except Matthew, who just didn’t seem to be able to grasp what he had done. He just seemed oblivious to anything except his constant need to move, run and touch - it seemed as though he just didn’t care about anything.
It was also during this time that his aggressiveness started to reach beyond his torturing of his sister and he began to hit everyone else also. I never saw any signs of anger during these times - it just always seemed as though he would get a sudden burst of energy and didn’t know what to do with it only that he HAD to expend it and fast! Picking up an object and bashing someone upside the head or hitting them as he ran by just seemed to satisfy that little something inside of my son, that little something that didn’t have a name as of yet.
It was such a strange time for us - here we had this child who did all these things, but never out of anger.... we couldn’t understand it! Then there was something else... his complete lack of fear. He had no sense of danger at all! He was afraid of nothing and seemed to think that nothing could hurt him. It was the latter that became my worst fear. We live on a 1/2 acre lot... the whole lot is fenced in and we had an assortment of latches on the gate. But Matt - being the genius at figuring out puzzles - would always figure out how to get them undone and sneak outside of the fence. For the most part I would find him quietly playing on the grass just outside the fence and I would simply go get him, bring him back in and redo the latches and change them around hoping that just maybe that would hold him in. It was when I discovered how far his lack of a sense of danger went - this child couldn’t be unsupervised for even a few moments! This great learning experience came about when I found him outside the gate again, playing on the grass again..... until a car came down the road. That’s when Matt stood up, looked at the car for a second then walked out into the street and stood there right in the cars path, staring at it! Luckily, for all involved, the driver of the car was going slow and was paying attention.
Needless to say, that was the only close call needed to finally wake me up and make me realize that Matthew just could not be left alone. Even then, I didn’t realize how far I would end up having to take this. I found out, however, when coming out of the rest room - I found my son sitting on the kitchen floor with an open bottle of cleanser at his side. After that episode was over and done with, things changed - Matthew was included in any rest room trips I had to make - if no one was here to watch him. I couldn’t take a bath or shower unless I had someone to watch him until I was out. To make matters worse, I ended up having to put a latch on his bedroom door - to keep him in at night - after waking up in the middle of the night and not being able to find my son. I did eventually find him, outside of course, at 2 am. Luckily he hadn’t left the yard yet - he had recently learned to climb fences after we got the gate latched in a way he couldn’t open - and I quickly brought him back in the house. Not only did I have to put a latch on his door to keep him in at night, but had to put a lock on Rachel’s side of their adjoining door to keep him out of her room.
It’s right about now that I feel the need to tell you that I’m fully aware that my son sounds like a monster, that’s because all I’ve told you is the bad parts.... he’s not a monster, he’s a wonderful child, very loving, very generous... I could go on, but the problem with this is that this is how he is now, for a while there he was still a so called “happy” child, it’s just that his happiness was lacking something. It’s more accurate to say that he went through the “kind gestures” and that he smiled a lot than to say he was happy. You’ll understand as I go along.....
The Doctor
It was when Matthew was 3 that things became a bit more clear. It was though everything stopped dead in its tracks. Matthew’s verbal skills which had always been delayed seemed to get worse, he was no longer able to communicate even the simplest desires or needs to us. Trying only left him and us frustrated. The “emotions” that were already disappearing were gone, leaving us with a shell of a son who was perfectly content to sit on the floor with his legos and rock himself or flap his hands/arms. When he did get up and do things it was never with anyone else, he was in his own world and no one was allowed in there with him.
It was then that we finally listened to Matt’s pediatrician who had been trying to gently prod us to go see a specialist who could help Matt. So our first stop was a psychiatrist who had training in pediatrics. This doctor spent 20 minutes alone (yes, I actually sat there and timed it!) with our son then called us in and casually told us that Matthew had PDD, a form of autism. We were like, “OK, what’s that?“ and the doctor asked us, “have you ever seen the movie the Rainman?”. Then he went on to tell us that Matthew could never function in a school setting with “normal” children. Wrong things to say - even IF we did force ourselves to see that it could be true, our son was NOT as severe as the character in the movie! Ok, he did do some of those things, but not like that! And what was this “normal“ thing? I think we pretty much stopped listening about there. The only thing I heard after those words were the doctor saying that no, Matthew was not hyperactive - yeah, right! I may not be a doctor, but I knew he was wrong there, even if I did suspect he was right on the money with the PDD diagnosis. So we decided to get a second opinion.
It was about this time that we began to wonder if maybe some of his problems could be his ears. Luckily for us, my sister-in-law works at a major Ears, Nose & Throat clinic. A doctor there, whom she had been telling about Matthew, told her to have us come in and he would put Matthew on a machine and check his ears at no charge! He said that having Matt’s ears checked was crucial when dealing with symptoms such as these.
So we went in to have the testing done one day. Of course Matt was all wound up, he was somewhere he had never been before, someplace with a lot of people and a lot of noise! So we could forget him cooperating for the hearing test! But these people weren’t giving up! We were taken to another room, where Matt was given a medication to make him sleep, then send to the waiting room to wait ’til it took effect. It was a long wait..... A REAL LONG WAIT!! The medication didn’t work! Matt was so wound up that the medication didn’t take effect!! Lovely huh? So they set up another appointment for a few days later, then sent us home. This time we were adding sleep deprivation to the medications! I had to keep Matthew awake all night so he would be so exhausted that he couldn’t fight the meds. Well, somehow I managed it and we got to the clinic, got Matthew medicated and waited for it to kick in.... and waited.... and waited. They even took us to the room the test would be done in and turned off the lights hoping he would fall asleep. I don’t don’t know how long we were in there, but finally, just as we were all about to give up, he fell asleep! So they immediately started hooking him up to the machine before anything else could happen! Funny thing was.... when he finally fell asleep, he was so tired that he snored so loudly the machine was having trouble measuring his brain waves reaction to the noises! But they finally got it done and Matt’s hearing was just fine! The only thing abnormal was that certain frequencies seemed to cause agitation.
The Blue Bird Clinic
Matt’s pediatrician gave me a list of clinics and a few brochures to look at and sent me home to talk to my husband about them. After looking through everything and talking to several people we decided on the Blue Bird Circle Clinic in Houston, we really liked the way they did things. Instead of depending on one doctor’s diagnosis the Blue Bird Clinic involved several, all specializing in different things. After all the testing is done they all get together and discuss the results, it doesn’t end until they are all in agreement of a diagnosis. Now actually getting in there was something else! The parents can’t call and make an appointment.... the pediatrician’s office makes the call, gives the clinic the info they have then the clinic mails the parents a questionnaire to fill out. Not a small questionnaire mind you, but pages upon pages! After you send that back to them they review it and decide if it sounds like a neurological problem (they won’t accept a child strictly on a suspected diagnosis of ADHD, it has to be accompanied by something else). If you are accepted they mail an appointment to you and some information on what’s going to happen.
Matt had 3 appointments, each about 2-3 hours long, each spaced 2 weeks apart. The first was a 2 hour medical exam, the second was a 3 hour psychological exam, where they tested him on both verbal and nonverbal levels, and the third was our consultation. There we met the people who had been working on Matt’s case, the head neurologist, a resident neurologist, a social worker, a psychologist and two others that I can’t remember what they did. They explain in more detail about the tests and what all they had been doing and why, then proceeded to tell us that first off, everyone was in complete agreement that Matt was, without a doubt, ADHD. Ok, no surprises for us there, that we knew, we just needed a doctor to make it official, done. Now for the part we dreaded.... YES, he was PDD-NOS, BUT.... they weren’t going to “officially” diagnose him just yet, they wanted to see if there were any improvements after one year in a structured school setting. The social worker had already made the arrangements with the school and gave us the name and number of the woman I needed to talk to to get him in early childhood classes. So Matt was started on medication, plans for another evaluation at the end of the school year were made and we were sent home with little less than a year to see if Matt improved enough to avoid getting the “official diagnosis”.
School Years
By the time the Blue Bird appointments were over we had one week to do and get all we had to in order to get Matt into school on time, I’m not sure how it happened, but we made it, he was there on the first day.
Early childhood classes were good for Matt - he went only a few hours a day and they taught him basic life skills. It all went pretty good - no major problems other than a constant fight with his medication. I can’t remember what meds he was on and when, but we went through an extremely short stint with Ritalin (caused facial tics), and since then, chlonodine, meliryl, cylert and finally Adderall (which he’s currently on).
In kindergarten he was in a contained special ed classroom where he did pretty good except for getting frustrated really easy, resulting in a lot of calls home. (While all of this was going on we went back to Blue Bird where Matthew got his “official” diagnosis of PDD-NOS.)Now I can’t remember why, but for some behavioral reason he was held back a grade at this time and had to repeat kindergarten which didn’t go over too well with anyone. I had been teaching him at home as much as I could and he knew everything he needed to know to pass all but the last 6 weeks of kindergarten the first time through, now here he was going to have to do it all over again! Ok, he was kind of bored with this, having to do the same things that he already knew over again, to make things more frustrating for him, I ok’ed it for him to be put half day in a regular classroom where things were much more strict than he was used to. Things didn’t go to well at all! I was being called to come get him about 3 to 4 times a week, he spent most of his time in the office for misbehaving in class.
To make things worse, the school was using the color coded conduct system and Matt was staying at red so much that he began to associate the color red to being bad and being in trouble. Anything red would send him flying off in a rage. In his own words, anything red was bad, evil and had to die! So much so that he even took his sister’s red beta fish out of it’s aquarium and mutilated it! Because in his mind it was evil and wasn’t worth loving.
Sadly, this is the same way he felt about himself. He told me that he was so bad that he knew his family couldn’t love him! Nothing I said would convince him otherwise. We ended up letting him stay with his grandmother for a few days to see if he would calm down any. It didn’t work, in fact, we had to “trick” him to get him back home. It was a heart breaking time for all of us!
Things got so bad that I had to pull him out of school and call the school psychologist, who immediately called an ARD where it was decided he would go to another public school where they felt the people were more able to deal with Matt and help him. Unfortunately it didn’t work out that way, Matt just could not function in an environment where people actually expected him to behave a certain way and where he was expected to do what he was supposed to do instead of him doing what he wanted to. No one seemed to be able to find a way of dealing with him.
So it came down to Avondale House, a United Way run private school for autistic children. It’s a relatively small school where they have residential students along with day students. The classes were kept small and I can’t remember exactly, but there were either 5 or 7 students to a class with one teacher and either 2 or 3 aides.
You know, it’s so funny, I was so against Matt going there, fought it till I had no other options, and here they did so much for him!! They “retrained” him so to speak, taught him what was expected from him at school, how to do it, what to do when it was too much for him and taught the rest of us what to do to help him. They taught him some sign language which worked wonderfully (I would recommend this). It came in helpful when he couldn’t verbalize simple needs and desires.... instead of getting upset with himself, he would use sign and be able to communicate. It was also used as a prompt when he needed a little reminder of what it was that he was supposed to be doing. They really helped Matthew out during a difficult time!
Now, what we found out later this year, was that during all this time we were having so much trouble with him, he was going through a type of regression where for a while, usually two or three months, he just seems to shut everything down. Like everything he has learned, everything he has achieved just disappears into thin air. Things are really ugly during this, he’s so hard to handle and there’s not a whole lot that we’ve found we can do but try and keep our sanity till it’s over. Oh, but when it’s over!! The first time Matt “regressed” he was completely lacking in any signs of emotions.... when it (the regression) was over my son had emotions!! Ok, so we spent the next several months trying to teach him how to deal with these, but hey, I wouldn’t have traded it for anything, I had a piece of my baby back! His second and last “regression” happened one year later where he regained a lot of his reasoning abilities.
After these times things got a lot easier, he was doing his work in school or at least trying to which makes all the difference in the world. It was easier trying to find a way to help a child who was frustrated because he had reached the end of his capabilities than it was trying to figure out what to do with a child that got frustrated because he was expected to do something he didn’t want to do. And Matt was reveling in the attention he was getting and he was proud of himself too!
Matthew is 10 years old now and in the 3rd grade,he has a wonderful shadow aid and a teacher who is a parent’s dream, his grades are great (A’s and and a couple of B’s), his conduct will vary from E (excellent) to S (satisfactory), every now and then there might be a N (needs improvement) in there somewhere, but not too often, everyone at the school comments on how smart and sweet he is. He’s generally doing great in most all areas at school.
Of course we still have a few trouble areas and some days where the whole day just seems to go wrong, but he’s really doing wonderful! Most of it can be attributed to the training he has received through the years. He is now able (in most cases) to recognize when he’s starting to stress on his own and knows to reach for either the squeeze ball or the brush (used for “brushing technique”) that is kept at his desk. He knows how to use these and unless testing on something like reading (his aid will brush his neck to keep him calm since reading tests are so stressful on him) he can use these by himself.
He still has some problems with things like competition, always being “first”, loud noises and large crowds and not being able to handle people being angry with him. But all in all he’s doing great! A far cry from the day I walked into the school and overheard a teacher talking about my son and calling him a monster! A far cry from the days when they thought he was incapable of learning, that he was a lost cause. I only hope that the person who said these things got the chance to see the real Matt and learn what an injustice she did to him and every other person (with or without a disability) by saying something like that when she really had no knowledge of the child!
I know the hard times with Matt aren’t over, but that’s ok, we can make it through it and we can come out of it better than before, we already have!
My ideas of “perfect” have changed a lot during the course of our experiences with Matthew, for I still believe my son is perfect and always will be. I can’t say that I still cry and wish he wasn’t autistic or attention deficit anymore, even though for his sake of course I wish he weren’t. But the PDD and the ADHD are part of him, part of what makes him so special. He is no less our son with these disabilities than he would be without them. My son/our son, is beautiful, happy, sweet, generous, kind, autistic, attention deficit and PERFECT!!!
I have left out a lot on Matthew’s story, someday maybe I will tell the rest. But some of the things I’ve left out are people. I don’t want to mention names, but these people know who they are, they are the ones who kept us going, taught us what we needed to learn, talked to us when our minds were too clouded to think straight. I want to thank all the counselors, behavior specialists, doctors, friends, shadow aids, teachers, speech therapists, family members and the many others who have spent their time, nerves and energy to help Matt develop into the wonderful little boy he is today... THANK YOU!
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