Special Needs

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The prospect of parenting a child with a number of special needs can seem like a daunting task to some. It is hard to explain to people the large amount of time we spend NOT focused on anything different than any other family with a perfectly typical healthy child. Honestly, outside of regularly scheduled therapy (which Jude views as another kid might view a sport or dance class) weeks can pass without anything really coming up. However after the last post regarding expansion of special needs it is perhaps helpful to other potential Bulgarian adoptees to put out there exactly what goes on behind the blog with Jude. Believe me when I say that she is not as scary as she sounds here. Not by a long shot. Jude is almost functionally…dare I say…normal.

Neurofibromatosis type 1. Jude had the tell-tale café au lait spots noted on her referral paperwork. Missed however was the 8 plus benign brain tumors seen on her MRI. This diagnosis actually has no effect on her.

Septo optic dysplasia. Not on her referral paperwork, however diagnosis was made by her American doctors before bringing her home. Jude’s vision is actually quite good in comparison with others with the diagnosis.

Epilepsy. Started after she came home. Jude has “absence seizures” which in the scheme of things are fairly easily managed.

Nystagmus. Not on referral paperwork. Diagnosis made by me on Trip 1.

Strabismus. Not on referral paperwork. May be related to other diagnoses or not. Conservative management has improved condition.

Retionpathy of Prematurity. Diagnosed in Bulgaria at Stage 3. In Maine was diagnosed at Stage 0. Meaning: resolved

Jude was born at 26.5 weeks. Bulgaria’s special needs list asked if I would take a child that weighed less than 2 kg at birth. At age 2, Jude’s birthweight of just under 2 pounds (0.8 kg) seemed irrelevant.

Jude was said to have a patent foramen ovale and tricuspid insufficiency. Cardiologist could find nothing and totally cleared her.

Jude has some slightly exaggerated externally rotated bilateral tibias. She wears orthodic shoe inserts to correct her gait.

Abuse. Neglect. Not in the referral paperwork. Jude’s behavior on pickup trip made it apparent that she had been abused previously. Once she became communicative consistently Jude exonerated her foster family. We had not suspected them, still it was a relief to hear it from her. This has been the most difficult”special needs” to work with. Unfortunately, it may be the most common special need seen in children who have been adopted from dire conditions.

As I. mentioned above. Jude is not as scary as she sounds here. She is easy to parent. Really. No joke. She isn’t on chronic medications at this time. She doesn’t need regular doctor or specialist appointments. She can walk, talk, feed herself, climb, run, play.

She is a child. A yes, definitely special in my eyes.

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2 responses »

  1. You always have the right words to say, which might explain why you are a nurse. Thanks for helping us laypeople. 🙂

  2. Our son’s special needs look scary on paper: “He was born prematurely, 4th degree with bronchopulmonary dysplasia, reduction defect of the right arm,intrapartum asphyxia,hyaline membrane disease, intraventricular hemorrhage 2nd degree bilaterally.” He does only have one arm, but all of the other stuff was related to his being born early, and none of it really affects him now. We had him cleared by a pediatric pulmonologist when we brought him home. This specialist also commented that most kids born with bronchopulmonary dysplasia are fine a few years after birth. So the Bulgarian referral stated that the adoptive family would need follow-up care by a pediatric pulmonologist, but he actually doesn’t need any further treatment. (And by the way, being born with one arm is actually a very “doable” special need – he has adapted so well that he can do nearly anything other kids his age can! He doesn’t even qualify for occupational or physical therapy at this time.)

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