Why I’m Thankful for My Special Needs Kid

easter earsWhether you are finding this post on Thanksgiving 2013 or sometime thereafter isn’t important. I’m writing what’s in my heart this Thanksgiving season, but these are feelings, thoughts and gratitude’s that I want to be reminded of year round. I am still grasping and grappling with all that comes with being a special needs mom. By that same account, I think most parents go through “sticker shock” when they bring home that precious little bundle of joy.

As time goes on, things get a little bit easier, I think. Ask me in about 18 years and I might be able to answer that with certainty. But this is what I know for sure today. My life is different and was set on a different path when I became a special needs mom. I’m grateful for it. Not because I want my daughter to have Angelman’s Syndrome. But, for what I see in her and what I am discovering in me that would never be so if not for her. She helps me to be a better mom and a better person. My gratitude out-loud speaks like this:

  • When we thought I couldn’t get pregnant, I felt it was surely because the Lord knew I lacked patience. I am still not as patient as I would like, but I am more patient and quick to understand that sometimes no matter what, I just have to slow down for people, things and circumstances. And waiting is okay.
  • “Firsts” have taken on special meaning for me. I’ve cried at almost every first for both of my girls. I’m happy for every step that Juliana takes because she works so hard at it. When I think of so many people who give up, I wish they could just see her put her all into taking a step. It puts a lot of things in perspective.
  • Screaming doesn’t mean that all is lost. And I am happy that I have found the wisdom in myself to recover from a big meltdown—mine or Juliana’s. Instead, I can put on a smile and realize that whatever is happening is just a snapshot of a moment.
  • Juliana has managed to learn the word mama. And while the experts say this might simply be babbling, I know different and know that there is a part of her that knows exactly what she’s saying. Of all the words she could have chosen to master, she chose that one. And since she’s learned it, not a day has gone by that she hasn’t spoken it and I know for sure she’s talking about me.
  • Smiles from Juliana warm my heart and those around me; it’s what she’s known for. While she may not be able to verbally greet a stranger, I have seen her make many a day in the grocery store or a line at the Post Office. I feel proud that my little girl lifts the spirits of a brokenhearted person. And she does it all with a single smile. Wow!

 

 

Choosing and Working with the Right Speech Therapist

Finding a good therapist that you like is not always easy. Initially, I didn’t know what questions to ask or how to determine if the person was a right fit for Juliana or our family. Then, things started to stand out, and I would now say I have a mental list of deal breakers I use when I am looking for a provider. From my prior post Advocate, I’ve explained the difficulty we’ve had in finding good providers. In the area of speech though, we have been very fortunate. For over two years, Juliana has worked with the same speech therapist.

Paula Sumple is a private speech language pathologist who has been licensed and practicing since 1992. She began her work in the Atlanta area in 1995. Paula initially went to school to study computer science, but found her niche when she worked at a clinic that specialized in traumatic brain injury. There are a lot of professional and personal things that I like about Paula. But what works for us is that she is knowledgeable, patient and engaged with her sessions. And while it’s not a requirement, I am just genuinely impressed that Paula walks the talk. She has been a member of the Special Pops Tennis Board of Directors since 2009. She is a certified Special Olympics Coach in Tennis and a registered Special Olympics Georgia Unified Partner.

paula and julesAnd if these accomplishments don’t make her shine enough, she was recently honored as volunteer of the year from the Atlanta Youth Tennis and Learning Foundation. Her expertise at work and commitment to our special needs community shows me that she is serious about the part she plays as a special needs provider. So, I asked Paula to sit down with me to share with other parents what can be helpful when they are looking for and working with a speech therapist.

What qualities/experience should parents look for in choosing the right speech therapist?

“It’s important to find someone with experience that the family needs. The right therapist will work with the parents where they are, but will not sugarcoat or misinform them. Ask questions specific to the needs of your child”.

Along those same lines, what may be some warning signs to keep looking?

“I would say that is very much like the first question. They may not be the right person if they don’t meet your child’s needs; you want someone who realizes they don’t know everything. And, be willing to move on if they are not the right person”.

When parents finally find the right speech therapist and sessions begin, how would you advise parents to practically apply the therapist’s recommendations into daily living?

“Start small. Trying to do it all day long will backfire. Parents can identify what they feel comfortable with; maybe one activity a day; using that particular strategy within the activity”.

As it relates to speech therapy and their child, what one piece of advice would you give?

“Even though we are the professionals, parents need to be on board with the therapy plan; otherwise no amount of services will work. Be sure you understand what is going on so that you can apply it day to day. You with deal with different levels of understanding, ability and pressures. Take things one day at a time”.

 

Shoebox Task: Practice for Pointing and the Pincer Grasp

Juliana’s fine motor skills are still developing but that doesn’t seem to stop her from getting what she wants. Picking up small objects is a challenge because she hasn’t quite mastered the pincer grasp. So, to get something small she rakes it with a full hand or a few isolated fingers–that is until recently.

It was Juliana’s teacher who told me about this great shoebox task to help exercise pencil pusherJuliana’s pointer finger in prep for mastering the pincer grasp. I now refer to the box as “Pencil Pusher”. Juliana’s teacher uses one at school and my version is pictured at right.

 I don’t know if making this box could be any easier. The supply list includes:

  • 1 clear shoe box
  • 1 recycled tennis ball container or slim snack container with a lid
  • 10 assorted decorative pencils
  • An assortment of stickers (optional)
  • An X-acto or fine pointed utility knife

To make the Pencil Pusher, cut a small pencil size hole in the top of the lid with the X-acto knife. Be sure not to make it too large so that there will be some resistance when the pencil is pushed through. When the hole is complete, place the pencils inside the container and put the lid on top. Use the stickers to decorate the top and sides of the container. This is optional, but the container didn’t seem quite as interesting when it was plain white. If you have a clear container you can get color and interest from seeing the pencils on the inside.

I simply store my Pencil Pusher in the shoebox, but you can make the items accessible on top of the box by cutting a round hole to insert the pencil container and a square hole on the opposite side to hold the pencils. If you choose to cut the square, be sure to insert a small container for the pencils to sit in. When I do this exercise with Juliana, I let let her shake the pencils once she pushes them into the container. She loves anything that rattles, so it is a good way to hold her attention and reward her for completing the task. I never suspected that this activity would be at all interesting for my two year old, but Jessa loves having the pencils disappear as she pushes them. I have an assortment of colored pencils so the box also serves as a way to help Jessa practice her colors. I have more than gotten my monies worth out of this simple exercise.

I don’t have any real proof that this activity is prompting the difference, but several weeks ago Juliana started isolating her pointer finger. At first, I thought I was mistaken, then I noticed her very deliberate isolation of her pointer finger. Now, it’s not too hard to miss because all the other fingers are wide and apart while she works hard to bend that pointer.

I guess she knew I was doubting what I saw, so one day out of the blue she isolated her finger to “point” on my leg. It was the cutest gesture. Since she wasn’t doing anything like this before, I feel like the Pencil Pusher is helping. Although she isn’t doing the pincer grasp all the time, she can do it now whereas before she just couldn’t seem to bend that finger. What’s exciting to us is that she is moving her pointer the way she should and that is a good thing. We’ll continue to use the Pencil Pusher as much as possible and I have no doubt we’ll soon be able to say goodbye to raking and hello to pincer grasping.