Sunday, June 30, 2013
No parent wants their child labeled, made fun of by peers, or ostracized in any way. But when does “protection” go too far? When is “keeping the secret” more harmful than helpful?
Being an occupational therapist is a commitment to life-long learning. So in my 35+ years of practice I had not encountered a child with XXX Syndrome until recently. I had to get a handle on what it was, prognosis, treatment and life consequences.
I have chosen this scenario because it was new to me, and perhaps is to my readers as well.
So what is it? It is a chromosomal variation that puts an extra X chromosome in each cell of the human female. It is not inherited and is caused by an error in cell division in utero. Generally speaking, these children are usually within normal IQ but may be lower than their genetic siblings, have speech delays and/or poor language skills, and have delayed motor skills with specific coordination and generalized clumsiness. There are also some slight physical differences but nothing too pronounced that would set them remarkably apart from their peers.
So here I am working with a parent who wants “all of this kept quiet’; not allowed to share with the teachers or the head of school, I am in a therapeutic communication no-man’s land.
During the evaluation, when trying to help the mother feel less anxious, I said “as one parent to another, our children are who they are and what they are we cannot take blame or credit”. At this she promptly replied, “oh but it is my fault, it was my egg that did not split right, this is all my fault”. Stunned and incredibly saddened all I could do is take her hand.
How many of our parents are in this situation? How many parents live the with misplaced burden of blame (about their children)? How often do we get so caught up helping the child that we miss what is going on inside the parent that lives daily with these overwhelming feelings?
As parents, and particularly moms, we (myself included) are in charge of “making it right”, “fixing it” and “kissing away the hurts”. When hurts just cannot be made right or kissed away, when the diagnosis is devastating, when the earth starts moving under their feet, parents become our patients too.
How we deal with the families is equally as important as making sure that the child is achieving developmental gains.
This is something parents cannot “just get over”; it is a seismic life shift that impacts them, their child, and their other children. Below is a list of ideas that my be helpful for the family and that can easily be incorporated into OT sessions and/or therapy.
1. Including siblings during some of the therapy sessions
2. Cooking cookies during a session with siblings and then having a “party/snack” together—letting the child in TX be the “leader”
3. Helping families structure homework or quiet time (if not homework, drawing, reading, etc.)
4. Talk about it, and then talk some more, there is no monster in the closet it is a fact that just is—keeping it natural makes it OK.
5. If needed suggest a support group for the parents/family if there is not one, contact a psychologist or a counselor and with respecting privacy, ask for resources
6. Former client’s families that have been through similar situations are often a great resource for both information and support.
7. Encourage the parents to share confidentially with the school, so that accommodations and modifications can be offered and learning stresses decreased.
8. Celebrate each other: make a “WOW Board” and each week each person in the family gets to post at least one thing that they are really proud of.
Keep sharing with the family all the wonderful things their child can do. Shine “light” on the achievements. If they haven’t shared the child’s issues with grandparents, or a close trusted extended family member or friend, encourage them to do so. Sharing this information allows the parent to not be alone and creates for them a caring community of support.
So, shhh no more, and shoo away the guilt—my daughter (now 34 years old) wrote a song when she was in 7th grade; the refrain was: “Kids don’t come with instruction books, and they don’t come with guarantees, I’d like to thank you Mom and Dad for taking care of me”.