When love is not enough


Lucas was born a cold winter day. The birth was long and tiring. I can hardly see my baby for a moment before they take him to clean the airway and giving oxygen. After a while it stabilizes and finally let me hug him. I feel his little body warm and soft on my stomach. It's a small miracle. Lips brushed her smooth face and inhale the aroma. If only I could keep this emotion in a jar!, Which could open a small bottle from time to time to remember the wonders of life ...

Lucas is just a baby two years when I start to realize it's different. It's so quiet! If you want something, I pull the clothes and what he says. But beyond that, rarely uses gestures to communicate. It does not say yes or no head. Often frustrated and angry because I do not understand: screams, kicks and slaps. No reaction when I talk or by calling him by name. My husband, Street, and I started wondering if it's a bit dull. Or not? When I say "sweet", Lucas runs to me immediately. However, beyond the physical contact. Sometimes accepts sit upa, but usually only when very tired. I take every opportunity to hug him, but nothing more than a few moments, and too infrequent.

The child has difficulty concentrating. It hovers about like a butterfly, and just stops somewhere to restart the flight immediately. He does not like toys is more interested in exploring. He loves to make things turn: If you have a stroller, instead of putting it to roll on the floor, spins and turns the wheels. She loves to do this with every object round rings, coins ... So does with her body. We tried to stop him, because if not, continue until you get dizzy and fall.

Not interested in playing with other kids. If we are in the park, sits in the sandbox and throw sand around, or throwing stones into puddles, indifferent to others. Sometimes he treats his sister, Sara, as if an object or furniture. Usually cover with a blanket, and if she obstructs the passage, sometimes rose-collared, the changes of place and drops to the ground.

The word "autism" me round the head. Seeking information on the Internet. Much of what I read there described Lucas, but Street and I refused to believe it's so serious.

We told him our fears of the grandmother of Luke, Gunilla, who frequently sees and gets along very well with him. She tells us that our son can not be autistic: is so happy and playful! It is true that hardly talks, but is still small. His sister was born recently, and in these cases is common for the development of children is delayed for a while.

Given our doubts, Gunilla suggests seeking professional help. After making several calls, we talk with a speech therapist who can meet Luke, but not before October. Perhaps the best, so you can grow some more.

With the therapist

Autumn came. Luke and I have an appointment with the speech therapist. It's a clear day, but cold and windy. No traffic, so I soon arrived at the hospital. My son is so cute with her blonde hair, straight and short. She looks at me with her big blue eyes. His round face is serious. Have seen my concern?

The therapist we receive. That's about my age. He bows slightly to greet Luke. He moves to the side and runs to the front desk. The woman follows, smiling. Lucas runs around. I try to calm him and make him feel upa, but it's impossible.

- Allow the therapist, "she says. There's nothing that can break, and you and I have to talk.

I try to relax, while watching my son. The therapist asked about their age, development, family relations and the reason for the consultation. Then read the file: Luke stammered not six months, at 10 did not understand single words, and 18 said no more than 10 words coherent, nor could he identify the parts of your body. The baby is already going to serve three years. The woman asks if you've had a hearing test.

- Yes, in spring, "I answer. Lucas heard good with the right ear but the ear test was inconclusive because it was hard hacérsela. Not really think it's a hearing problem. It seems the boy listens well when he wants.

The woman picks up a yellow bag that Lucas is approaching, but he keeps running around the room. I catch him and sat on the floor.

"Look," the therapist tells the child, and pulls out a plastic cow in the bag. What is this?

Lucas does not answer.

- How does the cow?

More silence. Then he took a toy car. The child almost snatched it and start spinning the reels.

- What is that? Insists women.

Lucas does not answer or look, just keep playing. She pulls the car and the boy protests.

- Look, you can take anything from here, "he says, and you about the bag.

The child puts his hand and pulls out a ball, which immediately throws the other end of the room.

- Ball, "says the therapist.

Lucas wants to repeat the word, but he wants to. The woman tries with other objects, but does not make the slightest attention. Luke suddenly gets up, fetches the ball, strip me and says "Ouch!". I threw it again and again.

- Hand-he says after a while, which means that you sit on my lap.

It is as if language were not a natural thing for him and had to invent their own grammar, and meanings for words. I ask the therapist what he thinks, and whether it might be autistic. He says he can not give an opinion after a very brief meeting, but advised me to see a neurologist to evaluate it. Then we said goodbye and go home.

Do something soon

The visit to the speech therapist confirms our fears and suspicions. For over half a year we only expect a change in Luke. Now we're eager to get advice and help. I phone Sachsska to Children's Hospital in Stockholm, and a nurse almost laughed at me.

- A neurological assessment before Christmas? It is impossible. It is October and we have a waiting list for two years, "he says. First we need that your doctor gives the order.

A waiting list for two years. I can not believe it. I panic. We can not wait that long. What if the kid is sick and needs treatment? What if he has a brain tumor?

- Are there any other hospital we can go?, Wonder, altered.

He answers that only a few hospitals perform these reviews and tell me some names. I make several calls, but waiting lists are the same length. A nurse mentioned that we can get an evaluation in the private practice of Dr. Tore Duvno.

After talking with my husband, I call the doctor Duvno. His waiting list is three months, but we convince him to attend before. It will take three months to perform the evaluation and the start in 30 days.

I'm desperate. Is there nothing we can do while we wait for the diagnosis? I call the support center for autistic children and adolescents, where psychologists, speech therapists and special education teachers implementing individualized intervention programs, and wonder if they can help. I say yes, but before the diagnosis is required. They also have a waiting list, of course, and is one year.

Everything I read makes me see the importance of early intervention: the younger the child to begin receiving special education, the higher your chances of leading a normal life. We must do something now.

I search for a treatment that can help. At night, while the kids sleep, surf the net and read everything you find about autism and language disorders. I check scientific reports for hours every day. Choose materials and begin to develop my own teaching method. Among other things, using movies and photos to teach Lucas to name objects and people around them. Gradually begin to understand. We make an album with pictures of foods, beverages and persons engaged in various tasks. Datateket took him to a place where kids with learning disabilities can play and learn with computers. Lucas test some games and it looks very funny when things happen on the screen. He soon learns to use the different keys and mouse.

One night I sit on the couch with a book in their hands. I've just read a few pages when I tell Street: - I think I found a method that could be used by Lucas! The method assumes that the child has a learning disorder, and that before starting to learn, must learn to learn ". I call the author, who tells me that in the city of Uppsala, north of Stockholm, is a psychologist named Örjan Swahn this pedagogy that teaches and lectures on the subject.

I am increasingly convinced of the choice and then I contact the psychologist. Swahn says we should form a team around the child, consisting of us-parents, therapists and preschool teachers. His exercises are designed and developed step by step. I think his teaching strategy sounds good, so we signed up for one of their courses.

In December and January, Lucas is evaluated. When they finish taking the exams, we met with Tore Duvno, who observes the child's behavior while playing. Still can not make a diagnosis, you must first carefully analyzing the test results. We have another appointment with him in February.

A step forward

The day of the appointment we went to Uppsala to attend the course on behavioral therapy Swahn. The first is that Lucas will learn to listen and understand the word "come". I am a yard of him. Swahn stands behind the child and holds it. Then I call: - Luke, come! To help you understand, Swahn gently pushes me. When the child nears, I embrace and welcome everyone in the room and say: - Well done, Lucas! At first the child self-conscious, but then begins to appreciate the applause and congratulations. We do it again and again. If Lucas does not move, Swahn says "incorrect", I call again, and if not walking, psychologist gently pushes him towards me.

After learning to imitate. There are two plastic buckets in the table. I say, "Do this - and shot one of the cubes in a box there on the floor. Luke quickly learns to do the same. Swahn Then he sits in front says "do this" and banging the palms once. Luke writhes in the chair, but do not applaud. When we welcome in the early years, did well and applauded spontaneously, but now that we want to imitate, not working. The next time an attendant stands behind him, and when he did not applaud, take your hands and helps you do it, but he cries, protests and tries to escape.

We all began to feel a little uncomfortable. Swahn says that Lucas is better now and do not react well when we are gone. He says he wants to do well, but fears it is too difficult and prefer not to try.

We spent a long time discussing how to create a balance that helps the child feel at ease and enjoy the exercises. All goes well, and finally we have a structured teaching strategy to work.

One day after completing the course we met with Dr. Duvno. Finally we give the diagnosis. We are calm and prepared for the worst. The doctor says that Luke has symptoms of autism spectrum disorder. Although the opinion does not surprise us, it's painful to hear. Street and I had hands and we start to mourn. Duvno think Luke has normal intelligence and language disorder evident, but as shown much interest in making contact and quickly adapt to the communication of images, there is hope that their symptoms of autism are the result of his language disorder. Now a little light shining in the midst of our shadows.

Doubts and fears

The training continues Lucas. The exercises work and is progressing. She says little, but their passive vocabulary is increasing rapidly. He soon learns new words and the notes on the images. We use your favorite candy as a reward either a year ago, and then we started to use it in the same year. We put red and green candies on the table and say "red points". If the child does well, it is, otherwise you must try again.

Despite intense practice, it costs you learn colors. In a year we put on the table a red cube and a toy cow. Then say "Give me the red" and is supposed to give the cube. We help you choose the right color again and again, but only when he has to choose the cow as often as the cube. It clearly does not understand. Or are we confused? After learning that a cube is called a cube, now suddenly we call red.

He begins to worry about choosing the wrong method. The exercises have worked well and Lucas has not protested much, but I think that begins to show signs of stress. Although not long ago that wearing diapers again is wetting your underwear. Maybe it's his way of telling us how you feel.

One day we give candy, and look with horror that only rejects the Reds. I thought it would encourage their favorite treats to perform the exercises, but rather have become a negative. I feel as if God was doing in the child's life. I control and direct their instincts and to influence and modify their behavior. I'm afraid of hurting him. After seeing this show these symptoms, the red candies are the straw that broke the glass. I do not want to experiment with their thoughts and desires.

Simple games

I use other teaching strategy. With behavioral therapy we get Lucas to sit at table, focus, listen to the instructions, understand and perform the exercises. Photographs and drawings showing you learned to draw different objects, and we realized that it has a large passive vocabulary. Seeing the images also began to pronounce the words. Now I want to show the function of language and to experience the joy of using it. One of our exercises is to play on our bed. I tickle, chased, caught him and shot at her, which she loves. It also taught him new words, like "fall." When Luke says "fall", I shot him in bed and laughs.

Search the web and find image banks created to improve the language of autistic children. I do a course that emphasizes the importance of play. The instructors teach us to motivate them through simple games, and is precisely what I want to develop communication skills and interaction of Luke, where instead of correcting mistakes. At night I keep reading books about autism, communication and psychology. She hardly slept, and my brain never rests. The line between dream and reality becomes blurred.

In the garden

The summer ends and finally go to the support center for autistic children see a speech therapist. This looks at Luke as he plays and then prepares an exercise program.

In August, Lucas enters kindergarten. The adaptation takes three weeks. For my son, now just over three and a half years is a big step to be away from me, being part of a group with other children and be cared for by adults who do not know.

The school district appointed a special education teacher to work with him full time. Your task is not simple. Lucas runs all over and throw things everywhere. In the game room, pull the pieces of Lego and destroys the "houses" that the other guys get up with pillows. In the morning class refuses to participate, and lunch is getting worse. I'm beginning to wonder if this will actually work.

Sometimes we have to force him to try new things, otherwise you will never learn. But his teacher is very patient with him. Think that interest should emerge without pressure. It is assumed that she must guide him in the exercises prepared by the speech therapist, but as Luke protest and she respects their will, the exercises are not done.

Throughout the year, the teacher often misses classes because of illness, and the school wants to hire a substitute for alleged reasons of money. The development of Luke is slow, so we hired a private teacher to work with him at home one evening a week.

I know that for employees of the garden my son is too demanding and would prefer, though I say so, who did not return.

Face the situation demanded a meeting with the district administrator and supervisor of the school. After that, another teacher was appointed special to help Lucas. As he quickly solved the exercises, you need some new, but our appointments with the speech therapist are few and far between. Lucas develops slowly and his speech is not improving.

After the summer assign another teacher, the third in a year. Her name is Tova and a lovely young woman in her twenties. Before it was a substitute in the garden, so my son already knows. Work two hours each morning in our house and then they walk to school. So Lucas has a little peace and quiet, and can concentrate on the exercises. Tova get advice from a speech therapist support center, which also gives us some materials. Lucas now behaves much better. It's no longer many temper tantrums, and when I go to look not at the entrance waiting for me. Almost every day playing in the sandbox, but always alone.

Ray of hope

In November I see a program on TV in Norway autistic children who receive intensive training and had excellent progress. Some of them have a completely normal life and attend regular school without extra support. It is a method of behavior therapy we started, and I decided to leave for fear of manipulating the mind of Luke.

Year and a half ago we left this therapy. Since then, almost no progress in communication skills. Soon to be five years, and everywhere I found that if a child does not speak to reaching that age, it is very unlikely to acquire a functional language, we are afraid that if we continue as before, never learn to speak. The speech therapist can not see Lucas more frequently, and the school does not give priority to their exercises.

I call the Norwegian company producing the program, which opened a branch in Stockholm recently. I explain our situation, and we want to add behavior therapy to resume as soon as possible. They say that many people have called for the same reason that I, but the authorities only pay for the treatment of 30 children with autism. I wonder how they could accept, and I say no earlier than one year. We can not wait! We lost one and a half, soon to be two. I talk to Street, and conclude that we have no choice but to pay for therapy for our money. The sessions for a year cost 170,000 SEK [$ 20,000], which greatly affect our finances.

In January we started behavior therapy. We are ready to know the method and exercises, because we went through this before. Tova with us, eager to learn. A Lucas has trouble forming sounds, so we spend 90 percent of the time to the task.

An hour before they arrive at school the other children, Tova working with Lucas and improve much. Soon you can articulate all the sounds, and then continue with words and language comprehension. They also practice eye contact and say "hello" looking into the eyes. My son learned to greet with a nod and a handshake.

Lucas works at the garden every day, and in addition to their individual exercises, have met other goals every day, for example, keep quiet and pay attention to the morning class, raise your hand when they say your name, sitting at the table lunch and participate in group games outdoors in the evenings. This time behavior therapy works well and Luke shows no signs of stress.

Three words

In the spring I buy a phone that you can paste pictures and phone numbers on the buttons. It will be useful when my kids are older and want to make calls. I set it and hit the number and street photo, mine and those of other family members. Then I teach them to Luke and Sara to use. Press the button with my picture, listen to my phone rang and then answered and talk to them. They laugh and think it's great fun.

Just before the summer, Street and I attended a party for my company, and a good family friend of my husband watches the kids. While speaking with some colleagues, my phone rings. I take it out of my bag quickly. I do not hear anything, so I cover the other ear with your fingers.

- Hello? I repeat.
- Mommy, I'm back! "Said a shrill voice across the line.
- Lucas, "are you? I ask, but the call is cut.

He was my son. I never phoned, and said three words: "Mommy, I'm back." I never said so fluently. Those three words mean you want me. Immediately call home, and the nurse answered.

- I just talked to Luke. Do you help draw? I ask.

- No, I knew I had called. Want to talk to him?

- Yes .. Hello, Lucas! Did you call me?

- Hi, Mom! She says, and then he hears the voice of the nurse.

- Do not want to talk anymore. All is well here. And going to bed.


After hanging up, all my emotions emerge and start to mourn. I apologize, and say I have to go home with my children. I long to see them, but I also want to prove to Luke that his words are useful, that communication is important.

In the car I cry all the way, very moved by the fact that Lucas could make something so meaningful. A little voice on the phone. My autistic son did not support a call asking me to come home.

A better life

I want Luke to be able to address all situations that deal with other kids his age, and I help all the time. Promoting recreational activities there, and took him to a gym for children to develop motor skills, as practiced in each class the same exercises, it is easier to perform them. Other parents wait outside and look through the windows, I, however, generally remain inside to help my son when he does not understand something or leaves the group.

One day, another mother asked me why I'm there. I explain the difficulties of Luke, and added that sometimes needs extra support.

- Ah, I had not realized she says.

It's nice to hear that someone can see my son like any other kid. I'm so used to think it's weird and different!

Lucas also attends swimming lessons. You can swim, but it is good to be part of a group, learn to follow directions and wait their turn. The pool has the opportunity to shine, as it is brave and enjoy the water, which enhances their self-confidence.

In the summer we enroll him in a children's golf course. This sport is ideal for him is both individual and social. The beatings are always the same (only changed clubs), and Luke likes repetition. Not easy, but with practice will improve.

In August he entered the primary and quickly adapt to the wider world. For us it is wonderful to be integrated to a common group. As you can read, write and count, leads his teammates, but has serious difficulties with language and social interactions. It's like a tourist in a foreign country. He has no friends, but she likes being with other kids and visit.

For years, Luke was fussy with food, and when he went into the garden I always ordered the lunch. In elementary school are very understanding: let him enter the kitchen while preparing their lunch, and that helps put salt and pepper. With time and try other foods and does not reject almost any dish.

One night, after reading before bed, I kiss her good night and get up to go. Then she says:

- Mommy, Lie down here.
- Do you want me to stay a bit longer?
- Yes! Exclaims happily.

It melts my heart and lie down beside her. When I was kid did not like physical contact, but now it looks nice. Outside it is dark. From the afternoon there were signs of a storm, and now the rays entering the room. Suddenly we heard thunder.

- Mommy, there are monsters outside. Hide! - Luke says, and gets under the covers. Come on, Mommy!

I follow the game and embraced under the warm blankets. The rain hits the window and the wind whistles through the trees. After a while we uncover and embrace. Shortly after warning by the pace of your breathing, already asleep. I do too, but Lucas wakes me up at midnight.

- Mommy? "She says in a tone of concern in his voice.
- Here I am, honey. Back to sleep, "I reply without opening his eyes.

It's closer to me and moves a few minutes to relax. He stays silent for a long while, and then says in a clear voice:

- Mommy, and it stopped raining.

Yes, my love, I say to myself. You're right. It stopped raining.

Lucas has already served 11 years. Attend classes in common and has a special education teacher. Speak, read, write and can count. It is a happy child who loves cinema and Transformers.

By Jenny Lexhed

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