About AutismRead on to find out more about the everyday life of families with children in the autistic spectrum.
Children with Autism
#EveryChildNeedsAChanceThe first smile, step or word turn into a treasured memory. Children grow in their own pace which amazes us with its small and big accomplishments. We trust our children’s development and expect it to follow some commonly recognized steps and timeline but in some cases they are not predefined. Despite our attention, care and communication, the child’s development does not match our expectations and it turns out that at times this is irreversible.
AutismWe are going to tell you a story about autism in our daily life… Not about the diagnosis and not as specialists, but rather as people, who go through it every day with the children and their parents. We know how difficult it is to talk about the peculiarities of your favourite child, who does not behave like the rest. All specifics in their behaviour, which make everyday life different, the habits of the whole family, going out, going shopping, travel, the most common meetings with friends – it is all different. At home Daily life at home revolves around the child’s reactions. Oftentimes they are odd, unpleasant, destructive even. Within the spectrum of a too quiet, noise-avoidant child to screaming, inconsolable crying and tantrums, self-harming, the family is trying to relieve the signs of discomfort and suffering. They are always looking for the triggers and how to prevent them. In our everyday life getting dressed, having a shower, cutting your nails, putting on new shoes or clothes, these all seem such an ordinary thing. However, in many cases they turn into a struggle with the autistic child and his frantic fear and resistance. Eating is another common event, which also turns into a prolonged activity, because the child will refuse certain foods or a special diet, which can be vital. Yet, again not uncommon is a special cooking of the food because only given colours, types and flavours are acceptable… Then comes sleep – sometimes it all comes down to a simple bedtime ritual. But at other times the child seems full of inexhaustible energy or else she wakes up with all her liveliness at the small hours of the day and falls asleep as late as 6-7 am. On this day just like every next day, the parents need to go to work, the child has to attend kindergarten… but he is unwanted there, because a larger resource of staff and special care is needed to take care of him.
Going outOn the street, in the park, in front of your building, in shops, at the doctor’s office, in the public transport, in the car… everything is carefully mapped out, planned and prepared. The noise, movement, light, scents, people and all things of most common nature attack the child’s sensations and he has to deal with these one way or the other. Whenever he cannot manage… a crisis often arises. How do we deal with a screaming child, lying on the ground, kicking, self-harming and pushing everyone away… A child whom all passers-by stare at and whom everybody is trying to “help” or to give “the most useful advice” to, that we are supposed to teach this child better manners… Well, we cannot deal at times.
This is not a one-off eventIt is to repeat itself for months, years sometimes. The child’s habits to hold her mom’s or dad’s hand and not to starch off running at the first tempting stimulus are only built very slowly. Safety comes first, but incidents are not uncommon. There are children who do not want to go out and still others who cannot get home. Habitual everyday moments we never even think about become an object of special rituals for things to run “smoothly” and parents get ready for yet another unavoidable situation. They start expecting the next bath time, meal or bedtime with fear and dislike. Many are ashamed that the care for their child is detestable.
Communication with an Autistic Child
Speech therapist needed
Talking to the child, showing him the world, playing together is the nicest and most natural thing about raising a child. It is easy at first glance… not when he lacks the eye contact, reaction to the parents’ voices, lack of interest for toys, though.
Playtime often comes down to repetitive activities, odd and self-stimulating movements with the hands, body and voice, attachment to certain objects or electronic devices. Tiptoeing which is only common and typical of autistic children is just a spec in the universe of peculiarities which parents can tell about.
Speaking… so anticipated, so close to “all other children”… well, sometimes it does not happen either, or else it happens but not “like the other children”. Each word, each gesture is an accomplishment, and when stretches of utterance come, they have to be meaningful, there must be a response, an exchange…
Parents’ efforts to understand the child often complement her expression and so a symbiosis is established which is a unique code for each family. Sometimes it takes months for another person to get involved and learn those signals so they can help take care of the child. The whole family’s daily routine is subjected to a schedule of taking the child to therapeutic sessions, procedures, useful activities according to the financial and logistic resources. And so the story goes on and on day after day, years go by and the amazing cases of autistic children depicted in literature and online about extraordinary talents and achievements, of unique skills and academic development keep parents’ hopes alive as well as the efforts to materialise a positive outcome… yet these remain but an exception. They are not uncommon in our practice, either. However, what we see is most often the hard fate, shame, unhappiness, rejection and lack of acceptance. Society is ready to help, but is also cruel and uncompromising. The children grow up, but they never become adults.
What else remains? It remains to keep working and not to stop doing whatever we can and must do. To fight for every gesture, every word, every small accomplishment which will help the next step. To use and upgrade our skills, because we love our work and every child’s smile is a smile for the whole family. We never give up. No one can promise the good future, but we can fight and make every child’s story a little better, because it is worth it. We believe in this.