On January 5th 1983, a Wednesday morning, my daughter Shawna was born. She was born in Richmond, Virginia. She had jaundice as most infants do at birth, and it was at a level where they kept her under lights a little longer than some kids. The APGARS and all other routine tests were fine.
The first month or two seemed to be about what we expected of a baby. However, at 3 months we travelled to New York, where we were originially from so that our family could meet her. Already, at 3 months we were beginning to see some signs that we would later realize were signs or indications of the onset of problems. This included excessive crying with out any consolability, extending (where she would tense and make her body straight and stiff like a board).
It wound up that either during this visit or just before we left for this visit she had developed double ear infections.
At 4 months she was not doing some developmental things that children should do at 4 months. She couldn't roll over to her back, she couldn't sit up at all (unsupported or supported) and she had no shock reflex. I'm not sure if Shock reflex is the correct terminology but consider it to mean the reflex that causes you to put your hands down in front of your face if you believe you are going to fall. She cried an awful lot and she was very hard to comfort. The usual means of consoling her did little if anything, many times they seemed to just irritate her. Often these crying sessions would go on and she would seem totally out of control and not able to calm herself. As she got older these times began to decrease in frequency. So we felt something was not going right even before we were told anything. The doctors seemed to think that perhaps it was uncomfort as you might see with reactions to dairy intolerance, so the switched her to soy based formula, which may have helped a little but it certainly did not stop the problems.
Usually I believe that for the most part she wore herself out and that's what stopped her crying during these episodes, however she periodically would have the uncontrolable crying episodes until probably age 10 or 12.
The fact was, she was extremely touch sensitive (tactily defensive is the technical term). Touch to her was not a pleasant thing. But holding her was really what she needed to build up a tolerance for being held. Another thing that might have helped would have been wrapping her or "swaddling" her. This is a way of wrapping a child tightly to give them comfort in determining their "space", which is a common problem in premature babies, which we also learned later.
At 9 months the lag was even more noticeable. Our pediatrician broke the news to me and my wife Kathy that he believed something was definitly wrong. He stated that they suspected something even as far back as 4 months, but the fact that some kids just don't follow the rules in growth patterns they were hesitant to do anything until now. They referred us to a Neurologist.
The Neurologist put her in for 4 days of testing at a hospital. She had EKGs, CAT scans, spinal taps and an Audio Evoked Response test (I believe it is called). She was tested for Fragile X syndrome and many other things. Nothing showed anything to be abnormal or deformed or not functioning correctly. The only thing that showed up at all was a low level of a certain growth hormone. Although the delay in abilities was certainly there. In later years we'd go through Visual Evoked Response tests (to test for visions effect on the brain) and a few others. Nothing ever has been found to be out of the normal other than the optic nerve. The low level growth hormone was either a false positive or whatever caused it wasn't helped by the introduction of synthetic hormone (synthroid). So we saw no effect from 1 years worth of endocrine treament.
The 5 days of testing added alot more stress to my wife and I. There were times when we really felt like we weren't going to allow them to do another test. In fact we did kind of cause a test or two to be delayed to give us and Shawna a break. In our hearts we knew we had to do the test in case it was something that could be fixed.
She then began a number of routines of numerous visits with specialists. She was seen by an Endocrinologist, due to the one hormone definciency they found. It was told to us that this can sometimes be a false positive and that if it was it you should see fast gaining of abilities and a noticeable change. He treated her with a synthetic thyroid medication (synthroid). We were told that it wouldn't hurt her if she didn't need it but it was a precaution in case it was the problem. In the end that didn't help so that wasn't it and the medication was discontinued.
She then also started seeing a pediatric opthamologist. Basically she has a poorly developed optic nerve. Shawna's is whitish pink where the usual one is a darker pink. (I believe that's the way it is and not reversed).
She also, for quite a while looked cross-eyed. However, the turning in would shift from one eye to the other. As she got older this decreased to the point where it is not visually noticeable, although it lasted until she was probably close to 4 or 5 years of age. It will sometimes still reappear if she is sick or tired, but it is no where near as pronounced as it was early on. Her eyes got more and more parallel over a period of time, with each other, until there appeared very little turning inward at all in either eye.
She also had nystagmus (the eye kind of vibrates or twitches). When you see that, it is kind of scary too, you think it's a seizure but in reality it isn't, the child never loses consciousness and in fact usually will react to it by closing their eye and sometimes becoming agitated. Usually this would happen when Shawna was either sick or tired.
Her visual acuity is thought to be quite accurate by their observation of the structure of the rest of the eye. However we also know that she has depth perception problems. Once she was climbing on a gym in a playground. She climbed up to a platform that was about 6 feet high and slid off to the ground, thinking it was not that high. She also used to stumble in a restaurant that had a front section that you stepped down into, but the stairs were covered with the same carpeting as the floor, so there was no color differentiation.
For these visual difficulties she is labelled legally blind.
We did find a doctor that was able to roughly estimate her accuracy using a very different test that I had never seen. Apparently however it is more familiar with low vision specialists. They have these cards that are lap size (about 8 X 18 or so). They have a pattern or design on them and the coloration (levels of grays) are variable as well as the separation of the lines and the thickness of the lines. They asked her to just touch the square. She did this through all those that they felt that she could see and then there was a level where she didn't react, so they assume that this is beyond her vision level. Then they go back and test it again to make sure that she isn't just becoming bored and unresponsive to the activity. The doctor was also very patient (can't tell you how many times we've been rushed through visits where it seems the doctors just don't have the time, and subsequently they don't get what they need to do an in depth diagnosis.)
There is also a case right now where her low vision teacher feels that she is seeing double, by some test they have done with her. However we've questions doctors on this multiple times, especially when her eyes were more crossed, and their stock response is that the brain takes over and will block out one eye, so that it won't be double vision. We are seeking a report of the test they used because they feel they have proved that she is seeing double. In fact the specialist actually had a situation where she had this effect herself, so she feels very confident in what she feels and the test results she has found. We need to present this to our doctor and see what he says.
Other things made the delay more evident as Shawna got older. She finally sat up after much therapy somewhere around one year old. She didn't walk until she was almost 2. She said her first word around 2 or 3 but speach was a long time expanding and still is limited in how much she can use it to express feelings. She tends to use it for wants although seems to go through times when either it's just too hard or she can't remember the name of an object. Then she may point and maybe make a sound.
The initial diagnosis was Developmentally Delayed. We had that diagnosis for quite a few years until Shawna was at the equivalent grade of 2 (about 8 years old). A teacher asked us if she'd ever been tested for autism. We told her our previous history and she said she thought she was. We went back to our specialist and asked him to specifically look at autism as a possiblity. He did and said she met the requirements. At that time she was labelled autistic and went into an integrated autistic program for grade 3.
Overall it is amazing at how far Shawna has came, from birth to now. Remembering the first two years, they seem in many ways quite a ways away. She still has a few specialists but they have dropped down significantly. She no longer sees the Pediatric Specialist unless there is something we need. The Othamologist visits are now around once a year, until we can get an actual vision test that Shawna can respond to. Other than that it's pretty much routine doctor visits.
She started talking at about 4 or 5, but even now speech is still favorite sayings and word ryhmes and some wants, such as snacks. Unfortunatly though things such as "how her day was", "What happened at school" and "What is making you angry" are still things that she can't reply to.
Facilitated Communication we thought might be a help for her. Some very dedicated people who worked with Shawna in pre-school brought it for her at a time when FC was just being introduced in this country. Shawna at first liked it even though it was very hard work for her (and the facilitator). There were things that came out that convinced me that it was Shawna and not the facilitator. So I don't care what the skeptics like to bring up I am a believer.
Unfortunatly, when things can be tough to do and when a kids life gets re-arranged quite often they tend to decide things for themselves. Around 3rd grade, a person who was a friend to Shawna and also used to facilitate with her moved out of State. At the same time, Shawna moved to the integrated school. After about 5 months in the new program she began decreasing her use of FC. It also didn't help that teachers for the new school changed in January and the new teacher did not have the respect of the other classroom staff. Basically in my eyes it was a failure of a class staff to work together. Classroom Assistants gave this teacher a very hard time, the teacher did not get support from other school staff such as principle and/or other administrative staff to re-inforce her position as teacher. The assistants had alot of education and had been used as assitants in the classroom for quite a while, so they thought they knew better than the teacher. Maybe they did, but someone has to direct the class and that is the teacher's job, not an assistants.
It also didn't help that the school she left, she really liked. We did too in fact, but they had no experience in teaching autistic kids and felt that they were doing her a disservice. I will always respect them for that position.
Shawna decided she'd rather talk than rely on anyone that was going to have to help her communicate. I know that she actually stated that she'd rather talk, but I tend to feel that the reliance issue was a part of it even if she didn't come out and say it.
We and the school have been trying other devices to help with communications. We used the Intellikey's keyboard for a while, with marginal success. This is difficult I think for some kids to connect the keyboard with the screen in kind of a cause and effect mode. In otherwords I don't think Shawna understood that typing something on a keyboard, or using a joystick could influence something on a screen. So then we moved to a touch screen. This seemed to address the cause and effect issue. Unfortunatly there is not tons of stuff to re-inforce this and I still try to do stuff that will foster this. Also I believe that pointing and the depth perception problem as well as fine motor difficulties make it difficult for her to do things by pointing. I believe that it may hurt her hand or at least cause dis- comfort. The school also tried the Dynavox with Shawna. It's a neat device but expensive. It just seems that none of the augmentative devices have really caught her fancy.
As for Shawna's day to day life though. Shawna likes school. If she's having a good year she tends to not mind school at all, doesn't even really seem to need the breaks. If the year is more difficult it seems that by the time the breaks come Shawna could use them.
We used to give Shawna a break in the summer and have her attend a girl scout summer day camp. At first she really liked this, but I'm not sure if the heat or differences in ages or what, but she lost interest in it.
In 1998 for the first time in several years we had her attend summer school. She thoroughly enjoyed it. This was with a different teacher, different school and just one or two adults that she knew. There were many of the smae kids in her class though.
Other times she has a favorite sitter (my wife and I both work, and even with that it's not easy). Shawna loves music, current music for the most part with a couple of younger kid favorites. We're about to celebrate the 1 millionth playing of "The Chipmonk's Christmas".
She also likes people like Bonnie Raite, The Eagles, Alanis Morrisett and a few others, mostly contemporary artists and some old 50s and 60s songs, such as "Wake up Little Suzie" and the "Macarena"!
She used to like places like McDonalds, Berger King, Wendy's and some places like that. She's also began to take sit-down restaurants. I think this is a direct result of community work through school. Something that I feel was a real plus.
However with some of her problems since puberty with behaviors she doesn't really seem to enjoy either any more. She likes to stop at them but now she wants to eat in the car.
Puberty was a real enlightening experience, that we are still trying to deal with. The first couple of years were horendous. A schoolful of typical pubescent teenagers probably didn't help, nor did an overly regulative school staff. But I think we are through the worst of the puberty issues, but it left a lot of baggage behind. First there is the PMS issues, then there are other behavior issues that need to be brought back under control.
We also moved last October (1999), Shawna was 16 and it was a hard move, despite the fact that she didn't seem happy either with our former house, or with her former school. Change is the key, that is going to cause stress no matter what. It took her about 3 months to acclimate to school and that is an ongoing process, but I think she is happier than her previous situation. She has a wonderful and caring staff where she is now. (special needs staff, typical school staff is still a pain in the butt, with their rules and one rule fits all idea. But it is better and I think Shawna is learning much more here and it will better prepare her for the future.
There are still alot of questions that will be answered in years ahead for us. Will she be able to live independantly? Will she get some real true friends among her peers. Many seem to come and go. Will she ever be able to work, if she wants to. Considering how far she has come in the past years I find that these questions still are too hard to predict. When she advances, sometimes she really takes off. The saying of "growing in leaps and bounds" comes to mind.
So until later, that's how things go and how they got where they did.
Last updated 4/5/2000