In this blog I will often first person singular, because although my husband loves his daughter, is my vision of the disability which I will discuss here.
Rosa was able to walk at 13 months but fell frequently. She always had balance problems and lacked confidence in his movements. We were dealing with at the time affectionately as "Grandma clumsy and a little lazy," we know recently that it has no 3-D, do not perceive barriers, cues are lost in the great outdoors, it needs space to fixed points in order to move easily and that some gestures praxic simple for us it is very difficult because of his dyspraxia VS. She was just so careful.
We understand her better episodes of terror when she left in bike ride with his brothers on the road and rolled it virtually "blind" because it does not perceive the obstacles and the edges of sidewalks, knowing that cars were dangerous crush from falls (due to its regular dyspraxia).
I noticed that our daughter was late graphic early, but when I was talking to his father, he replied: "No do not worry, it is the end of the year let it evolve at its own pace, each child is different, it necessarily will not evolve as fast as its big brother "
As he was not altogether wrong in absolute terms, I'm anchored this litany in the head and each time something seemed surprising at my daughter, a child of her age, I thought: "But do not worry not it is the end of the year, let it evolve at its own pace, each child is different, it necessarily will not evolve as fast as its big brother "
If a large section of Maternal they were concerned about his lack of socialization and the fact that she seemed to suffer nothing from the school did concern and yet the delay in fine motor skills were already highly visible.
I must point out that Rosa is very intelligent and has put in place only tricks to compensate for his disability, but are not easily discernible for adults who are responsible. She was always willing to perform manual activities which were tedious and today she enjoys writing and drawing.
At the age of 3 and a half overnight, our daughter started to squint. We took him in an emergency strabologue which found accommodative strabismus caused by an undiagnosed hyperopia time (the first visits are our ophtalmos to 4 years). We know now that the strabismus is a consequence of visual-spatial dyspraxia, although our youngest son is also farsighted and also began to squint to 2 years (but we were able to react in time for him) without being provided with dyspraxia.
My husband has refused from the outset that our girl squinted, he told me that "I'm imagining things." Subsequently when the strabismus was installed despite wearing glasses, he looked older. I went alone to the hospital to accompany our daughter to his operation, he did not even visited. Make no mistake, he adores his daughter but he was not there because he could not bear what was happening to our daughter. Strabismus is a lot of my daughter although still less pronounced. We stay there for now because it might become converging diverging with the evolution of his views growing up, if it was operating again today. Over general anesthesia is not without consequences for the organization and I would not, as some parents, do go under the knife several times for purely aesthetic reasons.
Dyspraxia my daughter turned out to CP. His writing was very slow and geometric shapes catastrophic, she lost no ceases business, failed to properly store his locker and even a slip in a transparent shirt was difficult. Yet she was very willing and made many efforts, but his productions were calamitous and tedious testing.
addition she was regularly pee in the pants in class, as much by anxiety because of its difficulty to anticipate his need to go to the bathroom. These repetitive episodes of enuresis (another symptom of dyspraxia) were obviously even more isolated from other children, she spent one year CP very difficult one in the school playground every recess and during lunch. She suffered great pain and many already feel different without understanding how it was different and why. She has always struggled to dress herself, can not close all the buttons, is covered with its difficulties and has the greatest difficulty in cutting meat. But it is voluntary, so she made numerous efforts (which cost him a lot) and is progressing steadily.
I began the long and difficult road towards the establishment of a Diagnostic Rosa from the PC.
Having previously found the chronic need of some teachers to put children in their huts and paste DYS or HYPER, when they seem out of the "norm", we were somewhat reluctant but we could not deny the differences, the suffering and needs help from our daughter.
Note that to establish a reliable diagnosis and obtain appropriate care when you have a disabled child is an obstacle course. Especially if many experts are of good will, dyspraxia visuospatial (Which we do not know the actual cause) is poorly known and very few specialists offer solutions. Some specialists in disorders of childhood can do their best to help a child with dyspraxia but the push into difficulties because they know nothing about this disability, where the usual solutions are extremely harmful.
To address the most urgent and forward same to talk of dyspraxia, Rosa was supported by a psychomotor and a speech therapist, to try to help as best as possible. Then I started talking with the school doctor, I took a file to the MDPH, who asked me a review in a specialized unit in which we met with several specialists: speech therapists, neurologists, psychomotor, orthoptists, ophthalmologists, occupational therapists, psychologists. In 3 years and apart from his weekly appointments, Rosa had no fewer than 35 medical appointments, mostly in Paris. It took me an investment in time and therefore money, but luckily I am a civil servant and I have days "sick child". In fact I realized at that time, because in theory if all children are equal in France to disability, in fact it is not true.
I often had to show me pugnacious and push for appointments to specialists very quickly made and in great demand. When I say quickly that within a year because it is not uncommon to hear of children with dyspraxia was revealed in the primary, but could not get allocations after years of efforts, in high school.
I am fortunate to have the permit to take Rosa to his weekly appointments and work close enough to the school to do it once per week on my lunch break at the end of his meal in the canteen. How are disabled children whose parents are not permitted, without money, do not speak French, working in private or simply do not have the strength to begin steps long and tedious? Teachers have often repeated their powerlessness to help children in difficulty, some with severe disabilities, without the help of their parents. On disability is for parents to do the homework, do not deny that it is therefore a strong factor of inequality for disabled children in particular, but for children in trouble in general.
All this still significantly disrupted our family life. On the one hand by the anxiety aroused in me knowing my daughter unhappy, probably with a disability, but having to wait for months before being able to propose a solution to its problems. His father also suffered, but he is a man who internalizes everything.
Luckily our daughter has had great teachers who have always wanted the best help academically accepting, including numerous enuretic episodes at school primary.
It was still difficult for her brothers, who did not understand either why their sister is different, to hear the other kids make fun of her, often having to defend it, while living their own lives, school social . This handicap is not physically visible, as in most Rosa is a pretty girl, very intelligent, relevant and has a great memory, children can not understand its neurological very sectored. Adults, for that matter.
It's always very difficult for her brothers every day, even if talking to them about the handicap their sister, was relieved. Children also need to understand better living situation. I was not always available for them as the long path of diagnosis was asking me lots of energy and I am well aware that they have suffered and still suffer from all the attention we give to their sister because of his disability. In the future we will make sure to re-balance things to be present for each.
The discovery of disability our daughter was unfortunately indicative of discomfort in my relationship. It is true that my husband has a job liability, he works away and it's not easy for him to reconcile everything, but it took days to accompany Rosa during visit whenever I asked him, 4 or 5 times, he never took the initiative to relieve me of this burden by taking matters in hand. I rarely asked where were the procedures for obtaining an AVS and was like for the rest of our family life, he expected me to take initiatives to follow suit. It has absolutely not realize that his attitude had disappointed, hurt. I
early professionals, in a new job difficult and I had an accident at home that was traumatic for the whole family and more striking to me mentally than I have said. It is generally focused on his professional problems, he refuses to see what bothers him and is so reluctant to accept the bad news that I often had to rely on friends to console me, reassure me, support me. I wanted to save, but our relationship has crumbled, but he never wants to see it either.
He thinks I am being aggressive with him and sometimes it's true. I have accumulated so much anger in me against him in recent years that sometimes I wonder if without the children we had forever. And yet I often tell myself that we have built a beautiful family, we are able to overcome hardships, that sometimes we are together and he is a good father, then my anger subside ... for a while.
There is no question of his trial, but for you to understand better my life you need to know that my husband is an anxiety that does not support failure, very nervous, which does not take up and cries a lot. So after a week of stressful work, many roundtrips for sports activities of 3 children, the appointment of Rosa paramedics, the concern about the future home of my daughter, 3 children's education, the problems of everyday life and managing a home, it I sometimes difficult to have to endure his cries and his incessant criticisms during the weekend.
I read that some couples face the handicap of their child ended up exploding in recent years I understood why.
I'm getting more and more serene for Rosa, his teacher, a wonderful teacher, very curious differences and the needs of each student has already set up solutions for her disability, she is in school achievement and flourishes. Because everything is connected, it now has friends, she is confident she has become more and more insolent! :-)
She just turned 8 years old, she is CE2, never repeated and will begin to learn to live with his disability.
On this blog I will tell you the evolution of Rosa, her way of growing up with her disability, the impact it will have on our family life, the look that people ask about it, strategies it will be profitable, its defeats (hopefully rare) and wins (many I'm sure). If it helps parents or teachers I'm delighted.
Now that his diagnosis was made and she will receive appropriate care, I can relax a little. More recently I was told repeatedly how much she is intelligent, voluntary, enjoyable and it will come out well in life!
I cried with relief.
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