Alice, 9 and a half years old
Alice has always been extremely curious, always observing and imitating, with a desire to try and do things for herself.
As a child, she couldn't make puppets, applaud. She was less toned than her brothers and sister. She only used one side of her body, coordination was very complicated for planned fine motor tasks, and even her face was marked by asymmetry.
She walked at 22 months. She sat down, did the 4 legs and as she was very afraid of the void in front of her, she did the "knees"! She ran and climbed the stairs on her knees.
Alice can't ride a bike without stabilizers, she doesn't ride a scooter either, and is afraid to ride on a toboggan... Thanks to our neuro-paediatrician, we ordered a tricycle instead of the bike and she's having a blast outings in the countryside, in the village, by day, by night… She got used to it very well: a request for an evening stroll and you can bet that she will get a detour to the sushi restaurant!
Alice's favorite element is water. She loves to swim, to fetch objects from the bottom of the water in the pool, to see the fish in the sea. a first step in the pool steps, maybe soon?
For language, baby, Alice made guttural sounds more than babbling. She has always been in the exchange.
Alice pointed quickly enough and took the voice (screams more than words) to be heard and understood.
Alice has distorted and still distorts many words! Some examples when she was smaller: "pita" instead of "juliette", "panpanse" instead of "bandage", "kokakome" instead of "Kinder egg"... What is surprising is that, once Alice has automated the correct word, if a distorted word is used by her before, she looks at us dumbfounded, telling us that it doesn't exist, that she doesn't understand. It's as if, for her, she had always had the right word.
His strong verbal dyspraxia impacts the articulation, the combination of sounds. This has a wider impact on the language with a very particular syntax.
Alice has progressed so much! She has a golden speech therapist. She's a chatterbox whereas she only combined a few words 3 years ago and her speech is more and more structured. Alice begins to say poems and sing pieces of songs. Until then it was difficult, she only sang the melodies.
Alice had a lot of drool when she was little. With the work of praxis, this becomes extremely rare. She always sucked her thumb, still a lot now.
Regarding the weight, it is to be watched. She grew a lot from 3/4 years old. Since we eliminated gluten and unrefined sugars as much as possible and made the cupboards less attractive, Alice has lost weight and got slimmer (in one year her BMI has dropped by 3.6 points). She moves better and more, which also helps.
Regarding sleep, Alice falls asleep without difficulty, rocking and sometimes singing. On the other hand, her sleep is very light, she does not always start the cycles and she does not like to sleep alone. Sleep is not as restorative as it should be and she often has bouts of fatigue during the day (not only related to fatigue from exertion). This obviously impacts emotions and their management.
As for schooling, Alice is currently in Ulis device in ordinary environment.
Alice went to nursery. She followed a kindergarten in an ordinary environment with an AVS two out of three years, then orientation in ULIS. His first assignment was very difficult. After three years, and a long fight, we obtained a change of school. The system has accentuated the gap in relation to her age group and her learning is a real Swiss cheese, but now Alice is in a positive and constructive environment, new perspectives are possible. Alice reads, counts, understands. She goes at her own pace. She is motivated.
His strong dysgraphia limits writing, but the setting up of the computer helps him a lot and does not prevent him from wanting to write manually. On the contrary, it is in the pleasure of the chosen gesture and no longer in the permanent constraint and the difficulty. She wants to tell stories, make lists to go shopping and prepare a meal for us...
What seems to bother Alice the most?
Her attention disorder, Alice is always plugged in everywhere!
Managing emotions is difficult, sometimes it feels like a tidal wave. Alice rises quickly in emotion but can come down just as quickly.
She has always evolved in stages as if she had to observe, digest information, plan and finally get started when she feels capable. His anxiety about success can be a hindrance. She lacks self-confidence, and may refuse a task for fear of failure. Being tenacious and courageous, with encouragement, she nevertheless commits, and very often succeeds!
Alice is aware of her peculiarities and the brakes that this puts on her relationships with others: "I'm fed up with the rare disease, my body doesn't do what I want, people don't understand me, I don't know how to speak" . If she dreams of sleepovers with a boyfriend or girlfriend, we can say that she is surrounded.
She willingly communicates with everyone. Relationships are easier with adults who generally show more patience with their language difficulties. She looks for play with children, and it succeeds, not as much as she would like, but still! Her big sister remarked that with her warm nature, her curiosity and her tenacity, Alice experienced incredible things that she might not “ordinary” experience: exchanges, gifts, experiences.
When rejection and indifference impose themselves on her, it becomes more and more difficult for her to take it: “why isn't he talking to me, I haven't done anything wrong”. She can be really saddened.
From a medical and paramedical point of view, Alice is followed closely.
For support, Alice has a shock team. She is followed in speech therapy, physiotherapy, psychomotricity, occupational therapy, orthoptics.
Since she was little, we have developed and implemented tools to help her in everyday life, in learning, in leisure. We had pictograms everywhere in the house, in filing cabinets during our travels to support language, planning, entry into writing. We manipulate a lot, use the whole body to understand sounds, rhythm, numbers, space….
We are looking for means of compensation to multiply experiences. For example, Alice went skiing in a “ski-taxi chair” to discover the summits, the pleasure of skiing, and to take the lifts that made her so want…. She has also taken individual lessons and is progressing (the snow plow no longer holds any secrets). We break it down including in certain hobbies, here: the unique pleasure of skiing, sharing, no physical constraint vs the will to do it alone, to succeed for a short future collective pleasure.
Alice practices dance in an ordinary environment with a great teacher Marion. She became aware of her body, looks, reproduces, coordinates, creates, exchanges and laughs!
Alice worked on the rhythm, the discovery of instruments and in particular the piano with a beautiful person, Claire. Her music teacher helped us adapt scores with symbols and colors to access melodies and overcome the memory deficit. It has helped to work on hand/eye coordination, and memory has been strengthened. Alice even automated small sequences without markers!
We continue our activities as "ordinary" as possible. Alice loves shopping, lunches at the restaurant (especially with her dad). We have been traveling with her since she was 9 months old. She made long trips by plane, boat, train, car and incredible encounters.
Alice is a joyful, curious, empathetic, kind, sensitive, courageous, determined, determined child. She is full of humor and clever.
She is also explosive, impulsive, with battled emotions.
Alice is amazing, and where you don't necessarily expect her.
Sometimes it's like it has a switch, it's on/off all of a sudden and in many areas.
She wants to be independent and fend for herself. She loves making us breakfast and taking it to bed. Pretty cool!
She is surrounded by the love of her family, and the attention of her big brothers and her big sister.
We are so proud and admiring! Yes it takes energy as parents. In times of fatigue or discouragement, his will and his determination have always boosted us. It is his strength that often feeds ours.
We want her to be as happy as possible, and to achieve the most of her desires and dreams.
While I said that sometimes I would like to have a magic wand to lighten the journey and mourn certain experiences, Alix, carrier of the syndrome, rightly replied: “oh I understand you so much for the magic wand! Stop thinking about the past. I know it's hard… But now look to the future. Alice will continue to evolve she takes the small country roads which are magnificent and not the highway to get there. The most important thing is to be happy with or without major studies”.
To all those who support us and help Alice move forward, thank you for believing in her and having ambition for her. Thank you for the mutual trust.
To all those we met, who shared part of the journey, who knew how to take the time to receive Alice, to build with her, to discuss, to laugh, to listen… Thank you.
To all our white pebbles that guide and strengthen us on the path to disability, thank you.
March 2022