Fragile X Syndrome Treatment

by Jeanette
(Michigan)

Running a home

Question: My husband and I adopted four older children 7, 9, 13, 16 at the same time (all siblings). We also have two biological children that are 1 and 3. We have continuously dealt with many behavior challenges. We are currently getting our son tested for autism, but the doctor suggested fragile x testing as well.

After reading about fragile X syndrome, I realize that it fits many of the behavior frustrations that we have been experiencing in our four older children. I am looking forward to getting answers this next month. And though I know there is no fix, I finally feel like I can give these kids what they need.


Do you have any suggestions how to best run this large, busy, family, while meeting the special needs of my older children?

I am in the process of setting up lists (with my sons help) to help them remember their bedtime routine (still a problem after almost 4 years for three of them), what to wear, etc. But I feel like there is more that can be done.

One specialist told me to help them be system dependent instead of me dependent and that has been the best advice so far. But when you are in the middle of craziness everyday, it is often hard to think ahead, and I desperately want to do this right.

Thank you for your time,

Jeanette

Answer: Fragile X syndrome treatment can vary for each child depending on his/her own specific needs. I think you are on the right track with developing the lists for each child. I would also consider doing a complete daily routine that includes homework time, chore time, free time, and bedtime.

Additional resources you may find helpful:

• Help with transitions or changing activities

• Compliance strategies

• Ways to say not to temper tantrums or meltdowns

• Chore Charts including family charts

Try contacting your local schools to see what services they may have for fragile x syndrome treatment. Occupational therapy can be great for children with sensory issues as these can be the causes of behavior problems. Sensory defensiveness is often commonly associated with autism and fragile X syndrome.

Finally, what I have found to be a great way to help with meals in the evening and grocery trips is to create a 3-4 week rotating meal plan. Allow your children to help create it and possibly even each choose a meal they can either make or help with.

I even created a grocery list for each week with the items needed to make the meals and general items that are always needed. I print it off before my weekly trip, do an inventory of what I already have to avoid forgotten items, and then make my trip. It is time consuming initially, but saves time, money and stress from always trying to decide what to make each week.

I also try to always have at least one crock pot meal a week, one meal my husband can make, and one meal that is big enough for leftovers the next day, such as spaghetti. It certainly eliminates the headache of getting asked “What’s for dinner?” 4-5 times and teaches cooking skills.

Good luck,
Rachel

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