The Wild Irishman
One of the most striking things about the Ryan family home is the living room. It is completely bare except for a well-used spring rocking horse. In most other homes, a living room is the featured room where guests are made comfortable and a family’s tastes are on display. But in the Ryan home this room is given over exclusively to Daniel’s therapy. The house is big and multilevel, in a comfortable suburban area of Edmonton, but maybe, on some days not big enough for this family of two parents and three children. The youngest, Daniel, aged five and a half, is autistic.

These interviews with the Ryans have been full of laughter and goodwill. Despite the rigours of having an autistic child in an intensive therapy program, they are a family with wide interests and lead an accommodating lifestyle. The interviews have taken up a good part of their Saturdays normally set aside for housekeeping organisation – they won’t even have had a chance to put away their groceries, but they sit with you, offer coffee and good conversation, and rummage through one of the many grocery bags to offer cookies.

Daniel is nicknamed ‘the wild Irishman’. He is a beautiful child with black hair and a sturdy body frame. But size is irrelevant when he throws his body onto his petite mother’s lap to be cuddled and sung to because he doesn’t want to work with his therapist. You understand immediately that this is a child that can wrap you around his little finger because of his beauty and affection. For some time we all watch, with silly grins, Laurel and Daniel, a portrait of love – the interview forgotten.

“One of the biggest joys I’ve ever had with Daniel is his response to music,” says Laurel. “The other morning, for example, one of the therapists came to work here with him and everything was fine until she wanted him to put his shoes on. He threw a fit because he heard an instruction. Working with Daniel you need to have a will of iron and a lot of patience, which is what this therapist has, but he just would not give up the kicking and screaming. I came along, scooped him up and sang to him, and in an instant the tantrum was over.

“We started music therapy about two and half years ago. The whole idea of art therapy appealed to me because it was something I was interested in myself back when I went to university. The music therapist came to our house with a guitar and a huge rubber container full of things like triangles, batons, and drums. Daniel immediately sat down and watched her as she pulled out these items, struck chords on the guitar and drummed. He was fascinated! He sat with her for a full twenty minutes – as if he was a regular child.

“It was the first time that I had ever seen him successful at anything – paying attention. By the end of the session he was looking over at me, making a connection and letting me know that he was here in the moment. I still get tears in my eyes when I think about it because all of his life, up to that point, he had been lost. It was an exciting breakthrough.”

In October of 1996 Daniel was diagnosed as an autistic child. It wasn’t until late March of 1997, after a considerable amount of work and lobbying by his parents, that Daniel was able to get funding for the ABA program (Applied Behaviour Analysis). The essential ingredient of ABA is focus on changing behaviour patterns. The cause of the physiological state is not important when dealing with autism; rather, ABA concerns itself with identifying behaviours, what triggers the patterns, and what kinds of rewards or consequences there are to encourage change. For autistic children, much of the focus is on communication and language because that is the defining major characteristic of the disorder.

For Alan and Laurel Ryan, teaching their son Daniel how to speak was a matter of encouraging him to make the connection between words and to associate them to things in the world. A regular child will make associations between language and labelling the world naturally, but Daniel couldn’t. His parents and therapists had to lead him toward paying attention to speech. ABA is an intensive, expensive program that enlists the help of (ideally) seven therapists whom the Ryans train themselves, a consultant who is brought in from Calgary every two months to help with issues, and at least 40 hours a week of therapy. Daniel was three years old when he started the program.

“We started out with just the basics,” says Daniel’s father, Alan. “Skills such as sitting down and paying attention to instructions, for even a moment, for Daniel are akin to torture. We would give him food rewards and say ‘good boy’. Once we got that established, we’d ask him to do something like clap his hands and we’d demonstrate it. We were encouraging imitation. The order was attention, imitation, then following instructions – you can mix it up a bit over the course of a session, especially when there’s resistance from the child and it’s early in the program. We would probably only repeat an instruction two or three times before Daniel’s attention would be elsewhere. Then we would say, ‘go play’ though he didn’t have any play per se, but it was another instruction and it was a break from the process. The whole session might last three hours, but the actual therapy might be many bits of time each lasting a minute or two. Some of the imitations were verbal. We’d say, ‘Daniel, say juice,’ and if he did then we’d reward him with a cup of juice even though we knew he had no association with the object and word. The next step was the correlation between words and objects. We put three things on the table and ask for the juice and reward him if he gave us the right thing. Eventually he was able to say, ‘I want juice,’ and be using the request appropriately. It took us about eighteen months to reach that point.

“Now, after three years of programming, less therapy takes place in a formal setting. His therapy can take place in the kitchen where he names things and anywhere else that he needs to be familiar with. In order to maintain the things he knows, though, we have picture books with objects and written labels. The books are not necessarily therapy; they serve a different purpose of maintaining knowledge because autistic kids can learn something completely one week and the next week not know it. So, repetition of knowledge and skills are crucial to his development. The picture books are nice and portable and we take them to restaurants and other places to help keep him focused.”

The Ryans also require that Daniel’s therapists create their own books to use with him and that the pictures be slightly different in style and rendering because many autistic children can recognise an object in one form, but not in another. Autistic children like to concentrate on one particular detail, for instance, a cartoon character on a cup will tell the child that that is a cup, but a cup without a cartoon character then is not a cup.

“It is miraculous to me now how a child progresses because with Daniel you absolutely cannot take for granted that he will understand anything,” says Laurel. “The simplest, most obvious things we have had to teach him. We had to teach him to point his finger and how to look at someone when they’re talking to him. He still doesn’t call out to me if he needs me. And it’s hard to conceive how a child can get to the age of three without having those skills. But an autistic person hates having to communicate and will try and meet his or her needs without the help of someone else. Daniel couldn’t reach the cups, so his way of getting juice was to open the fridge and pour the juice on the floor and lick it up from there. This way he didn’t have to interact with anyone. He had less than nothing when we started the program. And it was so very frustrating – our family doctor didn’t think there was anything wrong. He’d say, ‘It’ll come, he’s a boy, he’s a third child, some are just late starters.’ But we were at our wits’ end and had to beg for help. We were finally sent to the Glenrose Hospital, where they do the testing, and then, many months later, learned that our child Daniel was autistic.

“Getting Daniel into the ABA program was crucial to our situation. We were not functioning as a family anymore. We have two other children as well. As a family we couldn’t go out to restaurants that you are supposed to be able to take your kids to because if Daniel heard another child yelling then he would go ballistic – screaming and raging. And everyone in the restaurant would be looking at us with accusing eyes, possibly as if they thought we were abusing our child or that he was being too disruptive. It was very uncomfortable. But, we did get over our uneasiness and are certainly the educators in that arena now! We feel very strongly that as a member of society he has a right to be in public places regardless of his tantrums. For too many years these children were hidden away so that the parents didn’t feel embarrassed or unwelcome. But, ”Laurel laughs, “I don’t want to be stuck at home all the time so we’re all just going to have to deal with it.”

Allan agrees, “Society copes fairly well with something that is obviously recognisable as a physical or developmental disability such as Downs Syndrome. The expectations for a child like that are immediately lowered by society. But a child like Daniel, whose disability is somewhat invisible, until it manifests itself in the form of a tantrum, is assumed to be the fault of the parent. It’s the behaviour that is the disability. All of this is not to say that we impose Daniel on a situation that is not appropriate. We don’t go to church anymore because it’s too hard on Daniel to sit for that length of time. But if we have to grocery shopping, even if it’s not a good day for Daniel, well, we have to go grocery shopping. We are very aware, even if others are not, that we are doing everything possible to make Daniel more acceptable, more normal, and happier in his life. Daniel is able to deal with the outside world better now, but he needs to be exposed to it in order to accept it.”

Before funding
Before Daniel was approved for ABA funding, the Ryans lived a hellish life at home. Laurel remembers months and months of sleepless nights for her and Alan and for Christine and Stephen, Daniel’s older siblings.

“No matter what time we put him to bed he would not sleep,” she recalls. “He would climb out of his crib and be all over the house and into everything. We would put him back in his crib anywhere up to thirty times in a night. We reversed the lock on his door because we were afraid that he might wander out of the house. Locking him in his room sounds brutal but it was a necessity for his own safety. It was a long time though before we put the lock on his door because we kept thinking that maybe it was just a phase he was going through. We’d tried sleeping outside his door on the ground, but at some point during the night we were so exhausted that he could just step over our sleeping bodies.

“Locking him in his room wasn’t the answer either. He had a bureau dresser that he would knock over until we fastened it down. His mattress, his clothes, and everything else would be strewn all over the room. He’d lie on his back and scream and kick at the door. He would defecate and smear it all over the walls, mattress and everywhere else – sometimes doing this several times in one night. And we would get up each time and get out the cleaning materials, give Daniel a bath, clean the walls, carpet, get clean linen and pyjamas. Even if he was calm at bedtime, we couldn’t sleep knowing what we were about to face, expecting him to get up at some point, and he always did.”

Alan remembers the sleepless nights and the high cost to his family and work. “At two in the morning Daniel would be up and that would be until bedtime the next night. In order to try and allow the rest of the family some sleep I would stay up and feed videos into the VCR for him. It was like having a newborn baby who was much louder and destructive and worse still because he couldn’t be calmed down. By eight in the morning I was already exhausted and then had to spend a full day at work trying not to fall asleep. Laurel was at home with Daniel and not doing much better because his behaviour was pretty much the same all day. But, ”Allan adds with a smile, “he pays attention to us now. And he has some language to communicate his needs and wants.”

Daniel does understand that communication is a way of getting things. Laurel points out that the interaction comes from necessity and not from a desire for sociability. “There are certain things he can’t do for himself and then he needs us,” she says. “He can’t push himself on a swing, he can’t drive the car and he can’t operate the VCR – well, he can but we had to lock it up because he had an obsession with it. He’s extremely clever, he know where the TV remote sensor is and will sit in front of it so that no one else can change the channel. He’s very good at problem solving – he has puzzles, which he loves – and has mastered a strategy for memorising the way they fit together. He takes the outside pieces out first and keeps putting them back until he knows where they go and then does the middle pieces.”

Quiet nights
Within a couple of weeks of starting the ABA program, Daniel’s behaviour and the sleepless nights turned completely around. ABA, as Laurel puts it, “literally rocked Daniel’s world. It takes a lot of energy to throw tantrums night and day. And I think eventually we exhausted him because the therapy required compliance, so there would be a little instruction, a lot of tantrums, a little instruction, a lot of tantrums. And then finally some quiet nights.”

Allan says it took a long time for Daniel to learn anything at all. “Little things like asking him to sit in a chair were so painful for him. When he finally did he’d cry and scream as he was doing it. We’d listen to the therapy that he was having and we’d know that he wasn’t being asked to do anything extraordinary, but still he would react with such distress. It was really a terrible thing to suffer through for all of us, but nothing bad was being done and he was going to have to somehow pay attention to the world. Also, given the alternative, knowing that if we weren’t doing this we’d be just as unhappy, gave us a sense of direction. And, over time there was a decline in Daniel’s resistance to instruction.

“To begin the therapy we had a three-day workshop with a consultant from Calgary who had four years’ experience working in the area. She was with an agency called Autism Partnership. The reason we selected this type of therapy was because of the scientific evidence. One study depicts children going into the program at an average age of three years old and, by the time they were six years old half of them were in the public school system without teacher aides and were not recognised as autistic any longer. Another 43 percent still needed support, but were significantly improved, and the other final percentage didn’t improve. So, Laurel and I pursued the program for the very reason that it works.

“At first, we were accused left, right and centre by others that it was a form of abuse and that the therapy involved punishment – but we knew it didn’t. I remember mentioning in a group that we were going to start Daniel in the program and, behind my back, a speech pathologist was pointing her index fingers together and making zapping sounds implying that the therapy was electric shock treatments. That was the level of understanding. We’ve always been more than willing to have anyone at all come and observe the therapy.”

Putting it in perspective
Two years have gone by since Daniel entered the ABA program and many things have changed. He can dress himself, he’s completely toilet-trained and he’s getting better at sitting at the table with the rest of the family. Academically, Daniel is much further ahead than his peers in reading, spelling and arithmetic skills. His general language skills are still lagging; he has approximately one hundred expressive words that he uses, but most of them tend to occur in the form of requests. His language level is that of a two-year-old, but he does progress in that area daily and is learning new words all the time. The Ryans firmly believe that if it weren’t for the program Daniel would still be a child without language.

While Daniel has come considerably far in such a short time, there are others who might feel he hasn’t come far enough. The Ryans are hoping to place Daniel in a normal classroom for grade one this fall. A couple of months ago, Laurel was told by the director of the day-care Daniel attends that Daniel didn’t have enough control over emotions yet to integrate well into a structured classroom. This was very upsetting news for the Ryans. Having Daniel in grade one was one of the big goals they had been working toward for the past two years. It is a place, they feel, where Daniel can be more independent and mature.

“With Daniel, it is always behaviour,” says Laurel. “It’s not that he can’t learn skills or do the academic and cognitive tasks set before him, it’s whether or not he chooses to do them. Unfortunately, I think what initiated the director’s hesitancy was that Daniel was absent from the daycare for awhile and when he came back his routine was broken and we had to start all over again with Daniel’s tantrums that include kicking, screaming, biting, and pinching. This particular day-care director is very understanding so there isn’t a question of being uncooperative with us. There are three other autistic children at the day-care who are in similar programs to Daniel’s. They can talk, they can sit and play, and they don’t attack people.”

“It’s so heartbreaking,” adds Alan. “I went swimming with him the other night. We had a really good time at the pool and then stopped at the park and played there for awhile. It was almost ten o’clock and I told him that we had to go home and he threw himself down on the ground and had a major temper tantrum. He was kicking and screaming and I had a hard time getting close enough to him to put on his shoes. He had a bit of a break in his fit so I picked him up and sat him on the bench and bent down to put his shoes on and at that point he bit me really hard on the arm. So I picked him up and carried him home and all the while he’s biting me on the head. And all the while I’m thinking, ‘Oh, Daniel, we’ve had such a good time tonight and I’ve been so convinced that you’re doing better and that it’s easier to go out in public with you and I don’t have to worry so much about you attacking another child, and then you go and do this.’ ”

Alan ponders for a moment and then says, “But you know, if I put it all into perspective, even a year ago I couldn’t have walked to the pool with him. There would have been tantrums all the way. So there has been a massive improvement in Daniel’s behaviour. Still, you realise that there is so much further to go because one incident like that can ruin his chances of getting into school. That was the message we got from people early on, that the most important thing was to get the autistic bad behaviour under control. He’ll have to go into a special education classroom regardless of his academic skills if his behaviour isn’t appropriate. And that isn’t something we want for Daniel.

“It’s a proven fact that autistic kids will go with the lowest common denominator, which means little language and bad behaviour because bad behaviour is louder and flashier. And bad behaviour is desirable because it’s the easiest thing to imitate. Also, and this holds true no matter what the setting, few expectations are placed on autistic kids and the main object a lot of times is to keep them quiet using colourful books. Classroom management gets in the way of integrating someone like Daniel into a classroom because he would be easier to handle if he were allowed to disintegrate into non-functionalism. As a result, though, the more you let him follow his own agenda, the harder it is to pull him away from it and he’ll likely end up attacking you if you try. There is no opportunity for him to learn when he is having a tantrum.

Crisis Point
“But he’s going to be six years old and he can’t stay in the day-care. There are laws about attending school. In Alberta there is funding for special-needs children to integrate them into regular classrooms. It’s about $18,000 a year which is a fair chunk of change and you can get a lot of qualified help with that kind of money. If Daniel can’t get into a regular school then what we want to do is have that money to put him into a day-care that we found which is willing to set up a kindergarten. It’s small and they know him and it would be the next best thing to school. The fact that Daniel has trouble being in a group setting suggests that if we’re ever going to get him into society then he’s going to have to jump that hurdle. And the best setting for that is a place that’s small, flexible and mid-ground. The other alternative is home schooling. But, as Alberta legislation reads, you can’t use education funding (except for a nominal $450 for materials) for home schooling. You can’t access the special-needs funding for help unless there’s explicit permission from the minister of education.”

“We’ve brought this issue up to the public school board,” says Laurel. “It is discriminatory for a school to get $18,000 for a special-needs child, and not consider alternative schooling worthy of the money. Also, we personally know of some schools that do not use the funding that they receive to purchase services for the children. Right now, we are fighting for the public school board to use Daniel’s funding to contract the day-care for kindergarten. The decision is still up in the air; it’s been put before Alberta Education to decide. However if they don’t agree, we’ll be going to the ministry and then to the courts fairly quickly. We are at a crisis point.”

Alan explains the problem further. “One of the difficult things we’re encountering is that our demands fly in the face of the Alberta Teachers Association [ATA]. They are heavily opposed to any private education or home schooling. They see it as denying the value of teachers. They are an interesting group that contradict themselves. They have a website devoted to how put upon they are by having special needs children in their classrooms and how these children need more help. They cite all these incidents to illustrate their point and at the same time say that it is a horrible thing for the other children and teachers to have to put up with. They pick explicit examples – one story is of a boy who masturbated in class – to basically try and scare others. Well, I know that story and it is like an urban legend, because I personally know the father of that boy and what really happened. The boy is now an adult and the incident happened in a special-needs setting.

“So, that’s the kind of thing we’re up against. You would think that the ATA would want the extreme cases of special education to be done in a more appropriate setting, but no they don’t. The demands of the membership of employment combined with politics makes them want utter control. It doesn’t matter to them if it’s established that their ideas of how to handle special-needs children doesn’t help the kids to read and learn, or improve behaviour.”

Laurel laughs, “Not that we have strong opinions on this topic!”

Friends
For the most part, the Ryans have found their social circle of friends to be considerate and helpful in regard to Daniel’s situation. In fact, a few of their friends have actually been trained to work with Daniel. The Ryans’ extended families have largely held a dim picture of autism and don’t really understand it save for the typical ‘Rainman’ portrayal in the movies or ‘kids in corners rocking and screaming’. Alan’s mother, who passed away a short while ago, had a good comprehension of Daniel’s state and his therapy, but Laurel’s mother, who hasn’t seen Daniel since he was two, still believes the only thing wrong with Daniel is that he is tongue-tied. Alan’s sister, who is a psychiatrist, is probably the most understanding, but a few years ago the Ryans moved to Alberta from the east and are isolated from their families because of the distance.

The Ryans tend to rely upon their circle of friends who are largely made up of other parents of special-needs children. Ever since Daniel was diagnosed as being autistic, both Laurel and Alan have been publicly vocal and active for the rights of special needs children. They continually fight for Daniel’s rights, but they have also taken on the causes of numerous other parents and children who have come up against societal and bureaucratic barriers. They believe that it is not enough just to get Daniel what he needs and they understand the support that is required to get things changed. The Ryans know that everyday there is a new set of parents just receiving the news that their child is autistic and how alone and helpless they must feel. The Ryans know that there is strength in numbers. For Alan, trying to change things at the government level alleviates a lot of his frustration. For Laurel, it helps to be actively involved with other parents. They are always more than willing to actively support anyone in similar circumstances who needs their help.

“One thing that helped us tremendously in the early days,” says Laurel, “was the support program that the EEIP [Edmonton Early Intervention Program] had set up. They ran a program called Toddler Time. There is very little in Edmonton that is offered for autistic children. The Glenrose, which is the major diagnostic centre in northern Alberta, doesn’t offer anything for autism though they have programs for other disorders. We were also fortunate enough to become involved with an active parents’ support group. It’s become a source of empowerment for me. Many support groups are just places to go and have a cry, but this group focuses on getting parents to talk and network, and as a result resources are revealed that we can all tap into and use.

“We’re not all idiots, but still it’s overwhelming when you are first thrown into this situation and have to learn all the jargon. The professionals just spin off these terms as if you should already know the background and history of autism. Too, the only advice we got from the Glenrose was ‘here’s a letter to obtain a contract with the handicapped services for help when you need a night out.’ And I thought to myself, well that’s nice for my husband and me but what does it do for my child? They were offering reactive help and not proactive help. So it was wonderful to find, in my support group, people who were willing to talk through the terms and the meaning of autism, and what the resources are.“

The family

Besides Daniel, the Ryans have two other children, Christine who is ten and Stephen who is nine. Originally, Laurel and Alan planned for a big family, but after Daniel was born it just wasn’t a possibility given the time and attention Daniel needs. The three children get along with each other in the usual hierarchical way of siblings. Daniel is adored and doted on as the youngest, but he can also be a pest. Both Stephen and Christine know that they would have an easier time of it if they could just communicate more with Daniel. The level of understanding and empathy for their baby brother is impressive given the close age range of Christine and Stephen to Daniel.

“Christine and Daniel are a lot alike with their joyful personalities,” says Alan. “They both love to be tickled, they’re both physical and independent. Generally, they get along until Daniel does something like mess things up in Christine’s room. A couple of years ago Christine was reading a book about the wolf children –- children found in the wild. I asked her if it was a good book and she said that it was and that it reminded her of Daniel. So I read it myself. It was a true account of two little girls who were found living in the wild by a missionary. It was assumed that wolves had raised them. They had the same extreme behaviours that Daniel has. A parent of an autistic child reading these type of accounts, because there are other examples of wild children being found, could say that these are not lost children who have somehow raised themselves in the wild, but rather that these are abandoned autistic children who were left by their families in the wild to die and somehow instead survived.”

“Stephen is pretty attentive and affectionate with Daniel too,” says Laurel. “He has often said that he would like to help with Daniel’s therapy. When we say grace at the table Stephen adds on, ‘and please give Daniel more words.’ In a way, I think the children would like it if Daniel weren’t autistic because of all the preferential treatment he receives from us. Daniel is also never sent to his room if he acts up because that’s what he likes – to be left alone with his self-stimulatory [repetitive] behaviour. At the swimming pool they will all play together, especially on the floating mat. And the three of them will play in the water sprinkler at home. But it takes a major initiative on the part of Stephen and Christine to get Daniel involved. They can play extremely simple games like Penguin Shuffle because Daniel likes the music and it’s colourful and the penguins are lining up neatly.”

The Ryans do worry about the sacrifices Stephen and Christine have had to make for Daniel. Because Daniel comes with higher needs, the Ryans try to even out the playing field by operating as a whole family and making Daniel understand that he has to live with other people.

Living in the world
“There’s a philosophy in dealing with autism of modifying everything in the environment to suit the child. It’s rooted in the expectation that the autism will last forever so, therefore, there will be no progression,” says Alan. “Every oddity of the child is adapted to by adapting the environment. Well, we don’t believe in that. Daniel is going to have to live in the world as he encounters it. The best thing we can do as parents is make him cope with it and make him as independent as possible. We can’t expect anyone else to make the level of accommodation for him that we might be willing to as parents. And even in saying that, there are limitations to what you are willing to do as parents.

“For his own safety Daniel has got to get communication skills and he has got to get the idea of accommodating his environment. He likes to play in water puddles outside, but he likes to strip naked when he’s doing that and you can’t have a twelve-year-old boy exhibiting that kind of behaviour. He has no sense of traffic safety because he doesn’t understand that stepping off the curb doesn’t mean the car will stop. The car stops if the light is red, but Daniel doesn’t understand that.

“I think one of the biggest mistakes in talking about special-needs children and discussing what they are like, is pretending that you yourself as the parent are above any harsh feelings you might have toward your child. It places unreal expectations on others who are going through the same thing – that they are wicked for having gone days without sleep and are now having bad thoughts about their child and are afraid that they’ll hurt themselves or hurt the child. What’s wicked is not realising that you’ve got to get out and ask others for help.”

Laurel agrees, “And it does get to that point because you cannot sustain a lifestyle like that. He runs out of the house and takes his clothes off and it’s okay because he’s three, but it’s not okay when he’s older. And also, as the kids get older you see their parents becoming afraid of them. I certainly don’t want to, ten years down the road, say to myself ‘Oh my God, we could have done so much more.’ No one is perfect at being the parent of a regular child. But when it’s a child with higher needs all sorts of issues arise – if it’s your only child are you going to have more? If you have other children then what are you robbing them of if you are putting all your efforts into the higher needs child. Then there is the issue of how it affects your marriage, how it affects your relationship as a person with society. The guilt you can put upon yourself is enormous. It is nearly impossible to do it on your own. You have to be a really special person and most of us aren’t equipped to handle it. There’s a silly poem that goes ‘you’re a special person because you have a special child and God gave you this special child because you can handle it – and God never gives you anything you can’t handle.’”

“Bullshit!” cries Alan and we all have a good laugh.

“Yeah,” continues Laurel. “I can testify to that! But, it’s important for parents to know that there are people out there who have survived having a child with autism. Down the road maybe we’ll see that we haven’t always made the best decisions for Daniel, but we make the best decisions at the time based on what we can do as parents and what our knowledge is. For a lot of others, what Alan and I are doing isn’t feasible because of jobs, because of temperament, because of family situations and support. This really does make you prioritise what is important in your life though.”

“Also,” says Alan, “it’s incredibly important for people to realise that their children have rights. They are entitled to health care, education, and sports, and to reap some semblance of a normal life and inclusion in society. That takes an extraordinary amount of effort and it’s certainly not something an individual family alone can bear. There is no reason, either, to feel guilty for having brought this child into the world. As a society we support things like heart transplants and we don’t blame parents for having children with diseases like cystic fibrosis. As a parent the right thing to do, in my mind, is to be an advocate for your child’s rights. Being an advocate helps you survive as a family. If you take the other viewpoint, where you think as a family that you have to do it alone and cannot ask for help from others, then you’ll just destroy yourself and burn out. Even when you do have all kinds of support, it’s only natural that you burn out at times. You are not doing yourself any favours, nor society by going it alone, because eventually you will die and there’s going to be this very needy individual who can’t fit into society because there hasn’t been any system implemented to care for them. Look at what’s going on with adults with developmental disabilities – they are the only group that is not subject to minimum wage laws – they earn about $1.50 an hour doing the same job someone else is and making $6 or $7 an hour. Of course, I recognise that there are some situations where it is a kind of make-work circumstance or that the work pace of a disabled person might be slower. But, overall, the discrimination of these people is still quite blatant in a society that prides themselves on being sensitive to others’ needs.”

The Ryans are a family that strive hard, but also recognise their limitations realistically. “There are a lot of things we don’t do for Daniel,” says Alan. “As a part of his therapy if he’s doing something repetitive like jumping off the railing into the family room from the kitchen nook (something he loves to do) then we should always stop him and do something productive with him. But you know, the other morning I sat drinking my coffee at the table and watched him repeatedly jump off the railing – ”he laughs, “and I could live with that. For the moment I’d done as much as I could do.”

Laurel agrees and adds, “Because with Daniel every minute of the day could be a battle – sometimes you just have to relax and make yourself feel better by saying, ‘okay, I’ve done as much as I can and now I need a break.’ Also, Daniel can’t tolerate me being angry with him. He’ll come up to me and say, ‘Happy? Do it!’ And then he’ll smile because he doesn’t want me to have the angry face. We live in joyful anticipation of Daniel’s maturity, but we can’t count on it to happen on his own. We have had to work thousands of hours with enormous amounts of effort just to drag him out of himself. He will get better and he will use his personality in a more social context and adapt. But there’s still a long way to go.”

Update
Daniel is now seven years old. For the past two years he has been in regular attendance at an Edmonton Catholic school, last year in kindergarten and this year in grade one.

For Daniel, kindergarten was a great introduction to school. He attended part time and also had forty hours a week at home with ABA therapy. Grade one has also has been a positive and progressive experience for him. Through a lot of effort on the part of the Ryans, they have managed to have one of his therapists from his home therapy program be his aide in school. Having this continuity has helped Daniel immensely because his aide is familiar with the strategies needed to calm him and keep him focused on his schoolwork. Daniel’s tantrums have been lessened to a certain degree – the Ryans believe that much of Daniel’s aggression comes from a chemical disorder that medication seems to alleviate.

Daniel is able to keep up with the rest of the children in school by having a modified program. He has increased his language skills in verbal requesting, labelling, and reading and also takes math, art, music, science, and gym. He doesn’t take part in social studies or religion because the concepts are too difficult for him to comprehend at this time.

Laurel and Alan Ryan are extremely happy with the school’s interest and its work with Daniel. They say that the teachers and children are very accepting of Daniel and take responsibility and pride in ensuring that he progresses. He is one of the more popular kids at school and there has been quite a bit of feedback from other parents saying that Daniel has been a positive influence on their children. Everyone takes an interest in Daniel’s development, including the on-site day-care (which has managed through extra effort to employ a one-on-one staff member for Daniel) at the school. The teachers and children make every effort to further Daniel’s communication skills and encourage social interaction.

The Ryans are working closely with the school and Laurel is the chair of the school’s parents’ advisory council. Laurel and Alan believe that this involvement is a must in order for the voices of Daniel and other special-needs children to be heard. They have also come to a new understanding of what it takes for a school to accommodate special-needs children. Financially it is not always in the school’s best interest because it has to pay for individual assessment and consultation, which will stretch the limited budget too far if there are a number of special-needs children in one school.

One thing that isn’t going well for Daniel is his home therapy program. It has been difficult to get therapists, and the Ryans are struggling to find new ones to train. Because Daniel is not being actively engaged with his therapy, his self-stimulatory behaviour and obsessions are at an all-time high now. Without his therapy Daniel is regressing into his own world and not reaching out. It is hoped that by January the number of therapists will increase, but the Ryans will still need more.

Laurel is not only worried about Daniel’s present regression but also the future setbacks to come. Last February they were told that funding for their home program would be gone in June 2000 because Daniel would be six years old then. But because of tremendous lobbying and pressure by the parents of other special-needs children who were being cut off, Iris Evans, Minister of Children’s Services, agreed to allow funding to continue for children already in programs until August 2001 (this did not include children just starting). The Ryans know that Daniel will continue to need his home therapy long after August 2001. They see no reason why funding should be cut off at age six or seven or any age if the therapy is working. Autism may be the only disorder where the symptoms change over the course of a person’s lifetime – IQ and mental age can progress, especially with therapy that works for the individual. While Daniel isn’t as far ahead as some others in the program, he is a child who has made significant gains because of ABA, and Laurel says that, regardless of the limited financial support, they are grateful for having had the funding to get Daniel this far.

Laurel and Alan are not only grateful for the help and support they have received from others, but also for the child they have been given. Laurel says that Daniel continues to teach them, and others he comes in contact with, valuable life lessons. And everyone still has high hopes for where Daniel can go.