My prepared statement

This is the prepared statement that the GAL asked me to write out. She gave me a list of 10 questions that I should respond to. She is hoping to use the statement in court in lieu of traditional testimony.


Isaiah's needs are varied and so we have a variety of professionals that we rely for continued support.
Mon, Wed and Fri mornings he has physical therapy. It consists of 45 min of strength training, and instructions for David and I in therapy techniques to work on throughout the day. Thurs afternoons we have occupational therapy. It is an hour of feeding therapy, fine motor coordination, and schedule refinement. She also leaves us with "home-work". Things for the children to help him with and specific things for David and I to work with him on.
Daily, he has orthodic shoes and braces that he wears. We are working on gradually increasing the time he wears them, as well as increasing the activities that he can do with them on. We have a walker that we help him do "laps" with. (he is still really resisting walking, but if we sing "his song" the whole time he tolerates it better.)
Feeding is another thing we are working on with every meal. He won't bring food to his mouth on his own, so you have to sit behind him and guide his fingers. He will generally gag and turn his head a few times, but again we sing and try to get through it without too much struggle. The older children take turns working with him one on one. He loves to do puzzles with them, or walk outside. Verbally I am working with him, repeating very simple sounds and associating them with an action or an object. It usually takes two or three minutes and lots of patience but occasionally he will oblige and repeat the sound back to you. Nap and bedtime is another learning opportunity for him. We are working on teaching him self soothing techniques. Putting him to bed at a consistent time. Having him lay quietly with us for a short time before bed. Applying his lotion and medications.
His medical concerns is a bit of a list...
Enlarged ventricles in his brain. (this affects the brain matter around them, making them "deflated") Thin corpus colossum (affects the brains ability to "fire" from left hemisphere to right. Probably where the dis-co-ordinate walking and crawling stems from)
An open PFO in his heart. (at this point not affecting his growth, but will probably need repaired at age 4. This requires open heart surgery.)
A sacral dimple. (this one is tricky as it literally is a dimple in his spinal column and can open as he grows or close benignly)
He is what they term a "low tone baby". I call it laid back and squeeze-able. (he isn't motivated to walk or stand, and it requires a lot of effort to make his muscles work in harmony with each other)
He is about 50% delayed, developmentally. At this point it makes him hit the 9mo mark. And we are thrilled at any progress! His long term needs as we have heard them from drs and therapists are difficult. When he first was being treated we were told he would never make eye contact, or form attachments. That he might possibly walk at some point but would probably require assistance, braces, walker. He may not be able to attend a normal public school setting and that full time at home care would be the best environment long term. We are also told to expect a low IQ and an inability to live alone as an adult. That being said, :-( we also believe that our love for, and devotion to him knows no bounds!
We are prepared to make any sacrifices for him to ensure his health, happiness, and growth as an integral part of our family!
His condition after visits was very hard to bear as a mom. He would be returned poopy, or so wet the diaper had burst. Usually with food crusted onto his skin and clothing. There was an incident with him being returned with a lump and cut on his forehead, with no explanation other than, "you brought him to the center that way". He often had only had 10 or 15 min worth of a nap and would be messed up (schedule wise) for days. He was not eating the same portions or brands of food that he was used to at home and would be alternately constipated or have horrible diarhea. He started coming home with a strange rash around his eyes the last month or so of visits, from an allergy(???) of some kind. The most noticeable changes in Isaiah happened after the visits were stopped. His pediatrician, and therapists all noticed a huge change in his demeanor. When they asked me what had changed all we could come up with was the visitations were no longer happening. He remained on his normal schedule. I could better manage his allergies (food and environmental). He started being interested in therapy time, being easier to calm, sleeping through the night, (almost immediately!). His attachment became much more pronounced. The breath holding spells disappeared. His attention span and reaction to people around him drastically improved!
Attachment for Isaiah has always been tenuous. He would make great strides, reaching for us, etc, but then he would get sick, or get off his routine and would revert... In working with Marcia, (OT) we have learned so much about attachment disorders and delays. Instead of encouraging outside attachments, ie. babysitters, Sunday School teachers, neighbors...etc, we have learned "attachment parenting". Outside our home he is safe, and we want to encourage interaction with other people, as long as we are there. This plays out in out day to day lives in that we take him on our date nights, keep him with us in church or I teach the nursery, in stores we don't pass him around to be admired, and when out of our house only David or I will feed him. A few months after making these small changes we were thrilled with the new little "shadow" that wanted to be with us full stop. :-D Of course this attachment parenting works both ways. We can not imagine our family without him. Our whole family and our schedules revolve around our little treasure.
He is an absolute joy from the moment he calls us from his crib in the morning until that last song and kiss at night. We feel privileged and honored to have loved him into our family over the last 16 months.