Thursday, May 23, 2013

Dealing with Sensory Issues

I had really hoped to be able to write a beautiful post after Mother’s Day (which also happened to be my birthday) touting my husband’s ability to be a great husband and father.  He did such a great job taking care of everything and really making my day enjoyable, but apparently this little snippet here is all that I have time for.  What else is new?

The rest of this has to do with my frustrations right now of my kid having to be special.  I know she’s special, she’s the light of my life and best thing I've ever done, but I’m having some issues dealing with HER growing number of issues.  This is one of those times I feel like I yelling, “Why her?!?!?!”

I feel like when we aren't dealing with health issues, we’re dealing with development issues.  Those issues are always there it’s just that when she’s sick we can’t worry about the development too so we focus on getting her healthy and then go back to dealing with the other stuff. 

Don’t misinterpret my concern; she’s not as delayed as many other kids her age and in many ways she is very much like her two year old peers.  But we still have no speech.  She’s making more sounds, picks up new signs very quickly, has a whole repertoire of animal sounds that are insanely adorable, comes close to or occasionally says things that resemble words, and seems to be retracting her tongue more which are all really good things.  But now we’re trying to work on correcting some behavior situations.  And I almost think that “behavior situations” makes it seem like a bigger problem than it may be, but we always have to be conscious of the fact that these behaviors might be fairly easily and fairly quickly corrected in a typical kid, but in a kid that is developmentally delayed and speech delayed, these behaviors can manifest and become much more difficult to fix.  

Our main concerns right now are that she is pushing other kids in her class more and more, she still has occasional biting incidents, and she often doesn’t follow directions.  I know that may seem very typical of a two-year old, but I’m also pretty sure that most parents when given the option, would prefer their kids were not doing these things and so we need to work on correcting them. For quite a while now Tera’s developmental therapist has suggested that many of the behaviors we notice are a result of her needing additional input.  These behaviors include throwing things, pulling hair, pushing other kids, and biting.  

I found three sites that I think do a pretty good job of describing Tera and what she might feel (she would be the one needing the calming activities)

We've always tried to give her heavy things to push or carry (filled water bottles, helping us bring in groceries, 5 lb dumbbells, etc) and after a meeting of three of her therapists last week, they decided to try using a weighted vest.  This is just a little vest that she wears that helps calm her down and hopefully provides some of the input she’s seeking.  We also try to engage her in activities that keep her occupied such as helping me clean, helping us with dinner, having her carry grocery bags from the front door into the kitchen, and helping me with the laundry.  We also bought a 4 lb bag of beans for her to carry or push in her stroller which is a little safer than the 5 lb dumbbells she likes to try and lug around.  In addition to all this, we’re trying to incorporate more sensory table time (playing in water, rice, play dough, shaving cream, etc.) to give her some more input. 

I can handle all this (well most of the time).  It helps us to understand why she does some of the things she does and it gives us something to work on instead of wondering why she’s doing something.  The problem I have is this:  my sweet little girl is now geared up with orthotics to help her walk, hip helpers to stabilize her while she’s walking and help develop the muscles she needs to walk correctly, and a sensory vest to help her feel more secure and on task.  She’s running out of space on her small body for things!

And here’s the seemingly small and really insignificant thing that literally made me cry last week.  I hate that because it’s warmer and she’s now wearing shorts more, that her orthotics are more visible and she can’t just wear cute little sandals and shoes that other kids can wear during the summer.  Her little feet are so hot at the end of the day I think we might have to start having her socks changed during the day.  She ALWAYS looks adorable to me so what she’s wearing doesn't change that; it’s the fact that it’s something else that’s different.  And I’m really just going to have to get over it and deal because she walks so much better with them on and they make her a safer, more stable walker.  But I still don’t have to like it. 

We’re also going to start trying a method call “1,2,3 Magic” for discipline.  To be honest I still have to read the book but the idea is that she gets told that what she’s doing isn't acceptable and then progresses to removing her from the situation (basically a time-out, but with her it will be a short structured time out).  We just have to make sure that everyone is consistent in using is so there is no confusion. 

We are very lucky in the fact that when we have these problems come up, we do have a team of people who specialize in the area to consult.  Many other parents have to figure it out themselves.  We’re so fortunate that we are so happy with all her therapists and that they are so devoted to her and her progress.  It really amazes me to know they are so vested in her success and are so willing to do so much to help her progress and overall development.  They also work very well together so that everyone can add their expertise and come up with a plan that will be cohesive. 

This weekend will more focused on family time though.  My one sister from out of town comes in tonight for one of my other sisters’ baby shower.  We can focus on visiting and celebrating the TWO new additions coming to our family this summer (my sister is pregnant with twin girls).  Then I just have to make it through two more weeks before I get some serious bonding time with my special girl.  We’ll call this the summer of Tera and Mama; and hopefully by the end of the summer she can say that J

Wednesday, May 15, 2013

A Request

Well Tera has survived another major illness and we’ve all recovered as much as we can before the next one hits.  In the meantime we are in full fundraising and preparation mode for our third Gigi’s Playhouse 5K Fun Run/1 Mile Walk.  I know I must sound like a broken record when I repeatedly state how much support we get from our family and friends, but I will never stop thanking them and being constantly amazed by them.  We still have four weeks to go and Team Tera is already over $5000!! 

We also decided to sell t-shirts this year and use the proceeds as part of our fundraising.  My incredibly talented husband has come up with a great design and I’ve gotten orders for almost twenty shirts just in the past week.  These are all things that still make me wonder how we got so lucky.   A few weeks ago lucky would not have been what I would have used to describe my life, but even during that time we had so many offers to help watch Tera so we could rest, help us with food, groceries, and encouraging words that despite her health, we were definitely lucky. 

And now she’s healthy again and we can focus on raising money for an organization that provides the support that families like ours need so desperately for so many different reasons.  Other families that don’t have all the resources that we have or maybe just need someone who understands to listen can get that from Gigi’s.  We’ve gotten so much from Gigi’s Playhouse already and as Tera gets older there is so much more that she will benefit from.  All the services, programs, resources, and support that Gigi’s offers are free of charge and so we do whatever we can to help support this organization that has been so supportive to us. 

If you’ve been reading my blog, you know that we have had our share of stressful times since Tera has been born.  She’s gone through so many sicknesses, seen so many doctors, we’ve worried about her development, and constantly questioned if we’re doing enough to help her.  And through this all, we’ve been able to talk to other parents at Gigi’s who understand what we’re going through and can either offer suggestions, or just lend a sympathetic ear.  We’ve gotten recommendations for doctors that have been great, therapy strategies that were different from what we were trying, and reassurance that she will do everything her peers do just at her own pace. 

This blog has been so helpful to me on my journey through these past two years.  I was nervous about starting it because I didn’t know who would really want to read what I had to say, but I felt I needed to do it for myself and once I went public with it, I received so much more support than I could have ever imagined.  Unfortunately in the past few months I haven’t been able to post nearly as much as I’d like to, but hopefully as my school year winds down, I’ll have some more opportunities. 

So here are some questions: what is reading my blog worth to you? Have you enjoyed it? Been entertained by it? Cried? Laughed? Would it be worth the price of a movie or a dinner out? And would you be willing to donate that amount to help support this organization that has been so supportive to my sweet baby girl?

We’d really love to have as many people as possible join our team, but we also understand that everyone’s time is precious and limited.  Here’s the link to our team site and regardless of what you can do, I truly appreciate every single comment and word of encouragement and support.