Medically complicated kids are sometimes like puzzles. Each puzzle piece is important in understanding the child’s strengths and weaknesses. When parents lack information. When they are looking for a quick fix or do not fully support the medical team, pieces of the puzzle are missed and the child’s development and skill attainment lags.
The best plan of care can only be developed when all the pieces to your child’s medical puzzle
have been solved or explored.
If your child was diabetic, would you not insist they stay on their diet.
If your child had a broken leg, would you not insist the child wear the cast.
If your child did not understand math, would you not take them to a math tutor.
So many times I am in conference with a parent and find out the child’s caregiver is hesitant
to explore this option or only partially is following a physicians orders.
Examples include not wearing glasses, not sticking to a recommended diet for at least 6 weeks, not following a home exercises program (and not being open with the therapist), not having testing (it might be painful for the child), not pressing medical team to resolve sleep issues, not addressing constipation and urine leaking issues, and not pressing the medical team for additional answers vs heading straight for medications. And finally, not seeking family support and keeping themselves healthy.
In order to fully support the child ie scaffold, the parent needs to understand the physician or medical experts training. Medical experts have expertise in their area and address problems from that area. The parent may need to explore alternate options and speak up when they are confused or want to try something different. The parents needs to clearly communicate and follow up when recommendations are not followed/understood. Sometimes a second opinion is needed. I will include a few examples:
I once was speaking with a parent of a nine year old with leg pain. She indicated she had asked her occupational therapist about the pain and therapist had told her to have the child stretch the upper leg. My first thought was an occupational therapist addresses upper body differences and a physical therapist addresses lower body differences. I know little about leg pain but a quick review of literature indicates addressing leg pain can be complicated. Had the therapist broken down the pain into joint vs muscle or cramping vs tightness? As an educator, I encouraged the mom to speak with her pediatrician and get a referral to the best person to address the pain. The correct specialist needs to be utilized
I had a neighbor whose child was very premature. The child continued to struggle medically and educationally for several years post birth. The child, at age three, was seen by a ophthalmologist who recommended glasses. The child continually removed the glasses. When the parent went back for a follow-up, the ophthalmologist indicated, if the child did not want to wear the glasses, they probably were not helping. Really, if a three year old wanted to stop taking the medication would that of been ok. I suggested the parent get a second opinion. The second ophthalmologist suggest the child disliked the glasses as the glasses may have been causing the child to have a head ache. Tylenol every 4-6 hours was recommended and to replace the glasses when they were removed. Within two weeks the child was not only keeping the glasses on the face but searching for the glasses once woken up from a nap. Sometimes, a second option is needed
A third story. A four year old boy with tethered cord was seen by a neurologist and a urodynamic study was recommended. The parent decided to not have the study because the urodymanic study required the child to be catheterized. The parents never returned to the neurologist as they did not want the study. The neurologist had not explained what a tethered cord was, why it was important to address and how the urodynamic study was related. The parent did not communicate their lack of understanding, the neurologist did not explain the reason behind the recommendations and the pediatrician did not follow up and assist in coordinating care. Parents need to speak up and medical providers need to address the health literacy of the parent. If this does not happen, the child looses.
And last. A pre-teen boy is having extreme emotional outbursts at home. The parents are exhausted. Mom and dad are not on the same page with regards to care. The child is referred to a play therapist to address his aggression and anger toward others. The child was also put on medication. The problem, the parents did not get a referral for parent support, they were not going to attend parenting classes, they were not going to get help coming together as a unit to parent differently and they were not going to join a support group for families with similar needs. The parents expected the medical team to fix the child. In order to best support a child, the parents needs to support themselves.
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