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In Eliza’s first year of life at home she had an average of four medical appointments each month and an average of nine hours of physical therapy, occupational therapy and speech therapy each week.
In the perfect two-parent household, one parent often becomes a stay-at-home parent to manage the ever growing list of doctors and therapists.
Medical studies are the most difficult to decipher.
It is important to remember that virtually anyone can publish a “study.” The results of a particular study may be alarming, but then on closer examination you realize the study was done on 36 children in a remote area of Bali, so likely not the best “study.” With some practice though you can find out about new therapies or treatment that may not be known to your child’s medical providers which might be worth pursuing.
Once you’ve gotten over the initial shock of your child’s special-needs status, you now have to figure out how to navigate new worlds.
Instead of a handful of well-baby check-ups each year, you may have to navigate multiple specialists, Early Intervention, more than a few therapists, and in later years the education system.
From the day Eliza was born I knew I was going to be the parent of a child with some kind of special need.
Since you won’t be able to attend every therapy session (unless you win the previously mentioned lottery) insist that the therapists use a communication notebook to record comments about each session so you don’t have to decipher what happened from the nanny or sitter.
I set up a private Yahoo Group that Eliza’s therapists all joined and we could all post comments and questions and it was enormously helpful and alleviated some of the guilt that I felt in not being at every therapy session.
The unknown was what the needs would be, would they resolve or would they be lifelong special needs.
Not having a third trimester in utero causes a whole bunch of things to go awry and despite the mantra of some organizations that “support” parents of premature children, they don’t all magically “catch up” by the age of two.
Once you have achieved a level of organization that the NASA launch team would be in awe of, you will inevitably meet some partnered stay-at-home parent who will tell you that she (it is usually a woman who says this) made the hard decision to quit her job and stay home since it was best for her special needs child.