We Do Not Walk Alone

October 7, 2011

As the parent of two children with special needs (my boys have Fragile X Syndrome), I find myself relating to parents more and more as I travel down this road of early intervention and IEP meetings.   At the recent PWS conference that we sponsored with the PWS NE group and Advocates, I found myself teary eyed as the Doctor’s sang songs about PWS and showed a slide show.  I wondered how it affected the parents there and was able to ask a parent recently.   She shared a very similar response and shared some wisdom with me.  She said “walking down this road doesn’t get easier, it gets different.”  I have contemplated that and agree.  I think as you read the responses below you will find that you relate to these parents as well.  While I am extremely grateful to the professionals in my life, I find that the parent to parent connections to be my strongest as we walk this often emotional road with our children.  

At the last NY conference, parents were asked what their Fears, Hopes, Obstacles, and Stressors were during a Latham Centers presentation.  The responses collected are below:

  • Fears: Concerns regarding living situations, especially when parents are no longer able to provide care; lack of independence; that their child will be safe; that he’ll get a job.

  • Hopes: that their child will live a full life and be able to pursue goals and dreams, that she’ll live up to her potential, that he will hold a job and have a meaningful relationship; that he’s happy and comfortable and has the help he needs.

  • Obstacles: public knowledge of PWS; finding the best educational setting; having a son that does not like to work; having to fight with insurance companies; having so many doctor’s appointments; dealing with state agencies in trying to get help and funding; knowing what to push for and what to get our child at the right age.

  • Current stressors: a number of parents shared that trying to balance the needs of the child with PWS alongside the needs of siblings; helping siblings understand their brother/sister with PWS;  not knowing what the future holds; lack of support; no one understands; child that needs 1:1 attention 24/7; time management; dealing with the public humiliation during a tantrum.

My hope, if you felt like you were alone, you no longer feel that way. 

Contributed by:
Susan M. LaPlant
Admissions Coordinator

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