Parents go from one therapy to another looking for a small grain of hope. They justify the expense of thousands of dollars and time spent on the road when they see a small sign of change in their child’s development or cognitive progress. They have become used to looking for small changes, no longer expecting the big picture to ever change. Parents become immune to any professional expressions of hope, disbelievers that anyone can fix their child while looking for a quick fix to end the misery they and their entire family lives on a daily basis. The perils of the younger child who hits, throws things and never seems to remain inactive becomes almost insurmountable as they grow older and the rages increase threat of harm to themselves or those who care for them. The child has bruises and scars as well as the parents. Other children growing up in the home lose their own childhood and/or are subjected to trauma on a daily basis. Where does this end. The search for causal factors goes on. Parents seek medication that they hate in terms of side effects looking for a few minutes of relief while questioning the price they are paying.
Professionals providing treatment need to be on a more united front to help these parents . The new research emerging out of the field of neurology is sometimes not incorporated in the general clinic setting as the belief continues that these children are afflicted with a psychiatry treated disease that benefits with the introduction of anti-psychotic medication. The importance of sleep and research emerging from the field of sleep medicine pointing to the problem of sleep apnea, sleep disordered breathing and overactive sleep is also largely ignored in the clinical setting. There is not a uniform policy to continually repeat EEG studies using 24 to 48 hour monitoring as well as yearly sleep studies to continually search for causal factors for this incredibly disabling disorder. Are professionals still asking in depth questions about birth history, head injury, RSV, respiratory infections, high fevers, to name a few disorders that can affect the brain and behavior in a pervasive manner depending upon the age of occurrence? This disorder needs to be viewed as seriously and as threatening to quality of life as Alzheimer’s is. Perhaps then the insurance companies would pay for services to help these families that go into debt tying to pay for anything that promises to potentially help their child. Recently a news article attested to the problems families have had in terms of having to give up their jobs, going into tremendous debt to pay for treatment for their Autistic child.