She is bright beyond her age. She understands complex instructions and situations. She is empathetic and sympathetic. She has a great sense of humor about herself and others. She laughs and plays and does her best to share her thoughts about the world as she discovers it. She is (more often than not) a delightful human being with enormous capacity for subtlety.
She stumbles. She walks into doors. She falls, often while simply standing still. She is barely understood when she speaks. She is easily frustrated with herself and others. She is becoming aware that she is not like her peers, that she can not do the things that they can do, can not say the things that they can say (at least not so she is understood.) She is sad more often than the boy for no apparent reason. She loves to dance, but it makes for fearful viewing for her parents - the threat of injury all too real. She is trapped inside a body that does not obey her commands.
My daughter remains a mystery to us, and to her various therapists, and doctors, and diagnosticians. The official description of her condition (and that's what it is - a description; not a diagnosis) is hypotonia, low or weak muscle tone, and a problem with her praxia foundation: the motor plan is lost or distorted on its way through the brain or to the muscles. In other words, she is weak and floppy and can not get her body to do what whe wants it to do.
In her speech she is difficult to understand, even by us. If she says something out of the blue without the benefit of context as toddlers often do we are lost. She must repeat it and repeat it until we get the gist, or until either she or we just give up. We have found ourselves nodding in agreement upon occasion without understanding her just to avoid the mutual frustration. Some words are quite clear and would give the impression she is a typical two year old. But usually there is something substantial missing: a consonant is absent, a vowel is altered, the word is utterly mangled.
She uses long complex sentences. They have clauses, qualifiers and grammar beyond her age, but it would be hard for anyone but those that know her to hear it. There are words that she has never been capable of saying, certain letters she has never mastered, even after nearly 8 months of therapy and countless hours at home with us working on it. There have been improvements but not what we had hoped for, not what would be expected even from simply getting older.
She wants the words to come out. You can see her concentrate to make herself understood. But the signals her brain sends to her mouth are not translated into muscle action. Those muscles just don't get the message right.
She can't jump. She winds up, bends her knees, springs upward, but her feet never leave the ground. She can bounce on a trampoline but her feet never leave its surface. By her age or a little younger she should be able to jump over a string 8-14" off the ground. Being able to jump with both feet leaving the ground is a development that should be seen at around 18 months. She is 32 months old.
She can not pinch a clothespin, let alone work scissors. She runs with a painfully awkward gate: arms high and pumping, legs swinging to the sides, a sense of disaster with every step. She can not control her body in space, is not aware of her physical self in a way the rest of us take for granted. So she walks into things that she sees, that she is aware are there, but can't move to avoid. She falls down while standing because she suddenly stops sending the unconscous signals to her legs to keep a group of muscles tensed and remain erect.
Even when the signals arrive the muscles themselve are weak, not because they are unused, but because an inexplicable genetic mutation that is as yet unknown simply makes the muscles fail to work well. She has a difficult time sitting up from a prone position - it requires enormous effort. She feels floppy in your arms when you lift her. She is not strong. We exercise her regularly to increase her strength to its potential, but that potential is considerably less than that of a typical child. Athletics are unlikely for her despite her great enthusiasm for physical activity. Sadly, an increase in her boldness has not been equalled by an increase in capability. She has gone from skinned knees to genuinely dangerous falls from height. The threat of injury seems to have grown exponentially. She is cautious, but two year olds are not known for their decision-making skills. She may be bright, but she still does stupid things.
The State of California has provided her with occupational therapy, physical therapy, speech therapy, group therapy and special education visits. She has been shuttled to her various appointments day in and day out. But when she turns 3 next February she is kicked out. She is not considered profoundly delayed enough to qualify for services. She must be 2 years behind, cognitively disabled in some way. So at 3 she must be functioning at the level of a 1 year old to stay in and she is further along than that.
Her occupational therapist described her this morning as a block of swiss cheese: she seems fine at first glance, but then you discover all these holes in there. She can, for example, throw a ball overhand with great accuracy and force, something she has been doing since she was 1, but for most children is not mastered until 3. Yet, she can not walk up or down stairs alternating her legs as she goes. She can draw delightful circles, yet a vertical and horizontal line crossing one another is beyond her. She can kick a ball and chase it easily, but is utterly incapable of standing on one foot for even a moment. She can ride a push car at great speed and turn it on a dime, narrowly avoiding collisions, yet she can not get down from a chair without falling half the time. She can do many things, and some things she can not do at all.
We are at a loss. We have had tests done and evaluations completed and work-ups performed. The testers and evaluators and work-upers, the doctors and therapists and diagnosticians are all vague regarding the causes and just as vague regarding possible outcomes. It could resolve with therapy and disappear in a couple of years, or it could never get much better and she may spend her life similarly delayed - always with the swiss cheese holes, always behind in some way. So we have more tests scheduled at a facility that specializes developmental disabilities in children under five in the hopes that they can find what others have not. We may come up empty in our search for answers, diagnosies and prognosies, but we can't whistle through the darkness any longer.
We feel we are in a very dark pit and though I think we can deal with the hole, without some light - some illumination - we can never know where the walls are, how deep the hole is, and ultimately if there is a way out.
She is joyful beyond measure. She is profoundly worrying.
And we have begun to feel desperate.
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