Life With Lowe: Should You Attend a Rare Conference?

When you have a child with a rare disease, you can feel alone and you might think no one else understands what you are going through.

That is why the Lowe Syndrome Conference, held every two years, is so important for my family and I to attend. We just returned from the 14th annual Lowe Syndrome Conference in Washington, DC and I’m still trying to process all the knowledge and guidance we took away from the three day conference.

It was so nice to see families we met two years ago at our first conference, as well as families who have recently gotten a diagnosis and joining the conference for the first time.

I can’t express how much it’s meant to talk to other parents who understand the syndrome and can offer advice on similar issues they’ve encountered with their boys. We had some really informative sessions regarding the syndrome and I’m already implementing some things that were talked about and with Noah, already seem to be helping a great deal.

For example, during a behavioral session, I mentioned that my son, Noah, likes to touch the flat screen TV that is on a stand at home. He can barely reach the end when he’s on his tip toes and what he’s trying to do is push it to an angle and then go to the other side and do the same thing. He likes to see things at different angles so this is the main reason he likes to do this.

This of course creates a safety issue for him and we don’t want our TV to get broken. We have always given Noah a stern “No, don’t touch!” The result from this–he gets really angry and cries, hoping we’ll cave in and let him do what he wants. Usually about 10-15 minutes later, Noah tries again and this then creates a pattern all day of the same repeated thing.

During a session with a behavioral specialist, she explained that saying “No” simply doesn’t work. She was right. It hasn’t fixed the problem. Post conference and trying to implement the advice we’ve been given, our problem still continues, however, it is now less and if we keep at it, we’re hoping we can eliminate the problem altogether. Instead of using the word, “No,” try another word or short phrase. We’ve started using “Hands off” in a calm voice and to go along with that, at first, to wrap our arms around their arms while we say, “Hands off.” So far, it seems to be working in that he doesn’t get upset when he’s told to stop touching it. He will now obey the request for a little while but we are still having to tell him “Hands off” because he has the tendency to try at least once a day now.

Another thing we do is when Noah stops trying to get to the TV after we’ve given the new command, we praise him, and tell him he was a good boy for listening.
Another good point that was made during the conference that I have seared into my brain is that kids do WANT to do well. They may try to be mischievous but when it
comes down to it, they want to please their parents and do the right thing. There must be truth to that seeing how Noah is responding so positively with this new command to leave our TV alone.
Although the conference helped with that particular issue we’ve had ongoing for months, there are other nuisances of Noah’s that we’ve got to figure out how best to rectify using some of the suggestions given at the conference. We’ll get there. This kid does love to make us proud.

What it comes down to is, if your child has a rare disease and there is conferences that can help you understand the disease and your child better, I highly recommend trying to make it. Even if it’s just once. It’s not only the sessions from highly skilled medical professionals speaking, it’s also about the bonding, camaraderie and friendships you gain with other families that completely understand what you may be going through. It’s definitely worth it!

We almost decided not to make this conference due to the work overload we currently have, however, I’m happy we ended up going. The knowledge and understanding I carry with me now to help my son Noah as he continues to grow.