Tuesday, July 20, 2010

WS Convention 2010

We arrived at the hotel Sunday evening and it became apparent to me the trip was going to be amazing. As soon as I walked in the hotel lobby I was surrounded by people who looked exactly like my daughter. Payton was everywhere - she almost didn't know what to do with herself-she wasn't walking anywhere, she was running - to the elevators, escalators, anywhere she could go. The great thing was, when she would see people and ask their names (twenty times over) and introduce herself to them, they didn't just look at her like she was a child who was out of control, they responded, smiled at her, and just ate it up. We were surrounded by people who 'get it'.

Once up to our rooms (we got an adjoining room with my mom), I told my mom it was really emotional to see a hotel full of children and adults who are fighting the same battles as Payton - the same health problems, same behavior issues, etc. It felt like one big happy family. We were home.

The sessions were wonderful-my favorite part being the interaction between parents and learning how similar situations were. Hearing specialists speak about anxiety and sensory issues and give suggestions......you can't really put a price on it. Because of that, we will be making some changes in Payton's IEP to get a sensory diet and even work on replay for her anxieties (at home and at school).

One of the sessions my mom and I attended was for the siblings of special needs children. I focus a lot on how things affect Koen. Obviously, he knows no different now, but I fear he will one day question all the focus on Payton (her doc appointments, mtgs at the school, and just the extra time she requires compared to him). It was nice hearing some of the parents talk about how their typical child feels - for instance, how they feel they've missed out on having a typical relationship with a brother or sister. Ofcourse most parents say this thru tears because it is painful, but how wonderful to know we all share the same concerns and fears. They even gave suggestions on how a four year old child may explain to his buddies who ask "what's wrong with your sister?" and each year how the description will change as the sibling gets older. But on the flip side it was wonderful to hear the opportunities the siblings have - such as meeting new people they never would've met (at conventions), what a great sense of humor they acquire, how mature they become, and how they are inspired by their brother or sister with special needs. The sib session was one of my favorites.

The session on anxiety was wonderful as well. One key point I learned was how long it takes the body to recover after an experience that is frightening (in Payton's case it could be a fire alarm or a train whistle-depending on the frequency of the noise) and reiterating how truly painful hyperacusis is. Once the anxiety/panic attack happens it takes her body four hours to recuperate and get the hormones back down to a normal level for her. I had no idea it took this long. So-telling her "it's over, it's fine, don't worry about it anymore" doesn't really do any good for her. She can't help it (which is good to know because we really struggle with her behavior after those scenarios-it's good to know the reasoning it takes her so long to get back to herself). And-even better to know that so much of it is neurological and she really can't help the way she reacts. I have always assumed her systems are more fragile and it was nice to have a professional confirm this and remind us to be compassionate.

And then ofcourse the stimming. I've never really thought of stimming as anything other than spinning wheels or rocking, but I was shocked to realize that when my daughter is talking about trains nonstop or sitting on youtube watching trains she is in fact stimming. The OT and ST recommended not taking these things away from her, but in fact using them as a reward or limiting the time ("You have two minutes to tell me everything you know about trains but then we have to get to work" or "you can take all your phones to school with you so you know they are safe, but they have to stay in your backpack" or "If you have a good day you can print a train off").

We do plan on having an evaluation at CMH in Kansas City with an OT (referred by Noel, so I know she's good!) to get us a sensory diet set up for Payton and then the school will have on paper what she needs to keep her from getting so overstimulated. I've learned Payton has sensory over-responsivity. She needs sensory integrative therapy, a sensory diet at home and at school to facilitate optimal alertness, and may even need to use the Wilbarger Protocol (brushing). What is so wonderful in learning this is that we can now understand why she responds to sensory messages more intensely, more quickly and for a longer period of time. Another great thing to know is why in the world Payton is soooooo loud but yet can not tolerate loud things around her. The OT said a lot of times people with hyperacusis are the most noisy because of middle ear musculature. Intriniscally, a child can modulate ear muscles when noise is being made by him, but when it comes from the environment around her, she is in severe pain. She reminds us we need to respect that for Payton and realize she can't just get over it. It also explains why she is so easily distracted - she is hypervigilent of any sensory information coming in. We also plan on getting a velcro chart so she can visually see what needs to be done each day (for getting ready in the morning, using the restroom, etc). She knows what she is supposed to do, but her focus is so bad she can't focus long enough to do these things properly (using the restroom is a big problem for her). They have a 'door buddy' that she can take to the restroom with her so she can see each step and hopefully follow them in sequence. We really do have hope these changes will make things easier for her and then ofcourse it makes it easier on the household.

Then there's the session on preparing financially for your child's future. Bob and I have a lot of work to do in this area. I was unaware of a lot of things mentioned in this session - it's too bad the laws are set up the way they are for special needs individuals. My brain was fried after this session, but at least we now have an idea of where we need to go and what we need to be doing.

The greatest part of the convention was meeting the wonderful ladies who have been a huge support to me the past few years and of course getting to see the ones I've already met in person but rarely get to see. It was amazing to see them in person and I can't wait to see them again in Boston :) I'll try and add some pictures soon - I do have them posted on my facebook page, though. For anyone who has the opportunity to go to the convention in the future, I highly recommend it. Not just for the information, but also for being around the family of individuals who understand everything you've been thru. AMAZING!


sara said...

I am so glad you were able to attend the convention!! It sounds like you learned so much. Payton is lucky to have parents who are willing to learn more and search for ideas on how to help her with the dfficult struggles in her life. I wish I could have met some of the other families that were there!

Noel said...

I am so glad that you had such a good time too. I think just being around people who understand makes a world of difference. You just feel like everything is not so overwhelming :)

Anna said...

The highlight of the conference for me was finally getting to meet you and Noel. I was a crying fool in my room after the little party Tuesday night! Thanks for posting about the conference, since I missed almost all of it, I learned some key things from your post. xo Anna