Wednesday, August 15, 2012

A Parent's Perspective - Life With My X-Men

Today I'd like to welcome Kristie of Life With My X-Men. Kristie and her husband, Eric, are the proud parents of two boys who have Fragile X Syndrome. Drew, age 12, and Blake, age 9, always keep them on their toes!



Our life in five words:

There's never a dull moment!



Five qualities I look for in a therapist:

  1. Respect my knowledge about my kids. No, I don’t have a degree on Fragile X, but I’ve been doing this awhile, and I know my kids. I can tell you what will turn my child into a blob who just slithered to the floor to avoid doing something.
  2. This is an obvious one, but I think it’s really important. The therapist has to like my child. The kids are so in tune with people’s emotions and personalities that they know when someone doesn’t like them. When Drew was a toddler, we had a therapist who didn’t like him. I knew it and so did he. He cried through every session and I cried on the way home. We only lasted about a month with her. 
  3. Must be willing to learn about Fragile X Syndrome. I don’t mind if a therapist doesn’t know a lot about Fragile X. They just have to be willing to learn about it. Not a therapist, but our sons’ doctor really didn’t know much about Fragile X when Drew was diagnosed. But he was willing to learn about it and has turned out to be a great asset to our family.
  4. Is ready to have fun! My kids aren’t going to want to go to therapy if it is boring repetition and work. If it is fun and the therapist is someone who actually plays with my child, my kids are going to look forward to therapy.
  5. They have to be willing to share their expertise with others. If a therapist is willing to go into the school and share what works best for my child with his teachers and paraprofessionals, or come to an IEP meeting, I am going to be more inclined to sign on with them.

Three resources I can’t live without:

  1. Fragile X Facebook page. It is loaded with parents new and old who have gone through or are going through the same things as us. Networking with other Fragile X parents is so important! 
  2. iPad. Specifically, the iWrite Words app. Before this summer, Blake couldn’t write legibly at all. He now can write lots of things and his name is actually discernible.  
  3. Boardmaker Studio. It is a program that makes picture schedules and other visual supports. Kids with Fragile X need structure and their visual memory is great. A picture schedule is a great way to bring order to our day and gives them assurance about what is going to happen next.

Two words (or more!) of advice for therapists working with children with Fragile X Syndrome:

Have fun! 

My kids will connect with you more if you are fun to be around. If you are a stick in the mud, no one wants to be with you. Don't be afraid to be silly and get a laugh and foster that rapport with a child.





A word of advice for the parents of a child newly diagnosed with Fragile X Syndrome:

Take a deep breath. It’s going to be ok. I know it seems scary and terrible, but it doesn’t have to be. Learn as much as you can about Fragile X, know what to expect. Find a local Fragile X group. Rely on family and friends for support. Most of all, don’t forget that your child is the same child they were before they were diagnosed. And they are counting on you. Take time to accept the diagnosis, but don’t check out for too long. Your child needs you to be their safe place. It’s going to be ok.  

One dream for my boys:

When they are grown, I want to have given them enough support that they are able to live without relying on me for every little thing. I won’t always be here and hope to equip them with the tools they need to survive without me. I want my children to be happy above all

What I do to rest and recharge:

If I need a break, I take it. I am blessed that I have a great husband who understands my need for a weekend nap. I don't feel guilty for it. He handles things while I nap and I wake up ready to go again. I also spend time with my sister. She also has two kids with Fragile X Syndrome and needs time away, too. We go shopping or out to dinner and just have fun.

Thanks so much for stopping by and sharing your perspective, Kristie! Your thoughtful words and insight will be valuable to many families beginning the journey into Fragile X. Please be sure to check out Kristie's blog at for more information about Fragile X and to follow the journey of her two X-Men.

1 comment:

  1. Some advice for parents of a child with Fragile-X: This statement by this mother is a bit arrogant and prideful: "Respect my knowledge about my kids. No, I don’t have a degree on Fragile X, but I’ve been doing this awhile, and I know my kids. I can tell you what will turn my child into a blob who just slithered to the floor to avoid doing something.: If she knows so much about her child in relation to this disorder then why is she even seeking out therapeutic intervention. I would not take on such a helicopter-hovering parent's child as a client. Such a parent also needs to be aware that all parents have, to some degree, the feelings that no one should tell them how to parent. The sad thing is that they will listen to no one because of this. Meanwhile there are many parents out there who have gone through many of the same things and only offer their "advice/perspective" in order to spare the other parent the same difficulties. Same thing goes with a clinician who provides services for kids with these conditions. How do you think a parent learned so much about Fragile-X in the first place? Through their own personal experiences? NO......They learned from Blogs like this, from reading and studying information provided to them from clinicians and therapists. To think that a parent knows it all about their child is missing out on much needed guidance and skill building for themselves. This parent needs to build humility to better understand themselves and the need for therapy. If they know it all then don't seek therapy for their child, seek counseling for themselves. The odd thing is that the next criteria the seek in a therapist is one who may not know a lot about Fragile-X but is willing to learn. This is nearly contradictory. If the parent is there to teach the therapist and feels that she knows best then how is the therapist support to feel confident, competent, and able to even provide therapy? The mom needs to back off and let the therapist do the work. Kids will cry and kids will complain, but they need to learn to adapt to life as well as other kids need to. We all need to adapt in life. This is one of the most important aspects of human function. . . . .adaptation. Parents need to stop being enablers and start being "ablers." For what its worth, this is what I have experienced as a clinician over the years and from working with many many parents and family members over the years. Kids will cry when uncomfortable. Tough beans. Life isn't fair. ALL kids and ALL Adults need to learn this and be able to adapt to this one constant in life.


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