Q&A: 18 Month Old Showing Signs of William’s Syndrome & Fragile X

Tamara Guo Child Development, Special Needs Diagnoses

blockquote_bgHi, I have worked with William’s Syndrome and Autistic children. Right now I am a nanny and this little boy is 18 months old and shows characteristics of fragile x and autism. I am not a therapist and am not qualified, but since I have worked with hundreds (especially with infants and toddlers)in daycares and pre-schools and being a nanny for 10 years and having three kids and 2 grandkids, this boy shows signs with very poor eye contact, behavioral problems(hits his own parents in the face and scratches and bites)with other children, speaks no words, makes strange sounds, cannot chew his food, has terribly flat feet, cannot run, will give you something in your face and hits face with object instead of putting it in hand, has sleep disorders, etc. I guess what I would like to know, without losing my job, since I did have a talk with both parents about his crawling and rolling which were very disturbing, at 5 months, they did nothing about it and are very much in denial, just how can I talk to them again? I did tell them that I thought he might be autistic or have something that mimics it.
They never proved me wrong. Now they are having melt-downs because they can’t deal with him. He is progressively getting worse. Do you just let them suffer until they just can’t handle it anymore? I just think it is unfair to the baby since he could get evaluated and get his therapy he so desperately needs. They have been lying to doctors and telling him that he is great and doing so good. I am mostly worried of the baby’s well being. He does not talk at all and they say they will wait till he’s 2 since there are lots of children that don’t talk until 2. I think I need help in trying to cope and letting everyday go by knowing he needs help and I am not able to do anything about it. Anytime I mention it just a little, they shut me down.

It sounds like you have a lot of great knowledge and past experience with special needs children. However, being a nanny of this child, puts you in a difficult situation with his family. It sounds like you have done what you can so far, by addressing the concerns that you have seen with the child’s parents and encouraging them to seek help. Unfortunately, at this time, they just don’t seem to be ready to hear your concerns or address them, and as you say, may be in denial about their son’s behaviors and lack of language. I know you are frustrated that this little boy probably could have been receiving therapy and getting help from an earlier age, but until his parent’s are ready, there is nothing you can really do to make them seek help for him.

It sounds like his parents are starting to become concerned about him since you reported that they are having their own “meltdowns” in response to his behavior. Have you told them that an Early Intervention evaluation is a free service to them? Most Early Intervention evaluations are provided in home, so they wouldn’t need to take him to a doctor’s office, etc. You can also tell them that once an evaluation is completed, if he is eligible, it is still their choice whether they want to begin receiving services for their child. The system is completely voluntary and parent driven and the therapists write the goals with the family and work on whatever the family is concerned about. An early intervention evaluation team cannot diagnose a child (since you were concerned with autism & fragile x, these can only be diagnosed by a psychologist or physician), they can only tell a family whether or not their child is showing any developmental delays. Right now, since you are his nanny, you are very important in this child’s life and he is lucky to have you there. I would suggest that you draw on your past experiences to help this little boy with his behavior issues and speech and language skills during your time with him.

You ARE a therapist in this sense, and anything you are working on during his day to increase eye contact, decrease negative behaviors, work on motor skills and encourage speech and language skills constitutes therapy through play. As hard as it is, I would continue to every month or so, again gently express your concerns with his parents, and perhaps from your own point of view that even if they don’t feel they need help working with him on behavior issues or speech and language, that YOU need someone to help and support you with this in order to continue to effectively work as his nanny. Perhaps you can even contact your local early intervention provider yourself (you can find State Links on our web page here:http://day2dayparenting.com/resources/links/state.aspx and request a brochure to be mailed to either you or the family to try to get the ball rolling. It would be over stepping your bounds to contact the doctor yourself, but if there is a grandparent or another relative of the child that you could mention your concerns to, perhaps they could also help in persuading the family to pursue an Early Intervention evaluation. His parents may be shutting you down right now, but if they hear the same concerns from another source, especially someone in the immediate family, it may help toward getting them to address some of the issues.

You can also tell them to check out our ” Parenting Tips and Info” section of our web pagehttp://day2dayparenting.com/parentingtips/default.aspx and from there they may choose to browse the section on “How Children Develop” which will allow them to see developmental milestones for an 18 month old, as well as “Red Flags” in those areas which may warrant an Early Intervention evaluation. I wish you good luck, you sound like a great nanny and you are already doing so much for this child, so you should feel good about that, even if the parent’s choose not to obtain services for him at this time.

 

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Tamara GuoQ&A: 18 Month Old Showing Signs of William’s Syndrome & Fragile X