September Patient Spotlight: Simon!

Simon is a triplet and because of complications that come along with a triplet pregnancy, they were born 9 weeks early. After 2 months in the NICU, we were so happy to have him home. He was your typical sweet little baby. But after a few months of being home, we started to notice a few things that didn’t seem quite right.

Tell us your child’s story.

Simon had a major head lag preventing him to sit up properly. We went through First Steps to have him evaluated. We were then told he had low tone. Since 9 months of age, he has been in therapy. Physical, Speech, Occupational and Behavioral. He didn’t walk until he was 2, but is now faster than his sister’s. He has struggled with eating since we found out at 18 months his long list of food allergies. Now at age 4, he has tried a lot more foods and although he fights us, we manage to try new foods daily. Simon was diagnosed with Autism at age 2, right before he turned 3. Although it hit us hard hearing that word, it really made sense. But now, that word is really just a word. Simon amazes us every day. He has been able to spell words that an average 4 year old would not be able to spell. He has a love for the state’s and just learning anything he can. He is loving preschool and has just come so far thanks to all the amazing therapists and teachers who treat him like he is their own!

Why did you choose APT for therapy services?

APT came to us through First Steps. At age 2, all of the therapists seemed to be from APT. Everyone that has come into our home has been a blessing. Every therapist has taken their job beyond what most people would. Taking calls, stopping by to help me in some desperate moments, and always checking in, even after they were his therapist. You gain friends and sometimes family from APT. They really are the best.

What improvements have you seen in your child since they started therapy at APT?

EYE CONTACT! Those big beautiful blue eyes looking into yours is the best thing. He seeks me or his dad for assistance when before he would either figure it out himself or just not do it. He communicates with us using his iPad, and APT has helped him navigate it and has him communicating with us his wants and needs. Before he had no voice.

What has been your brightest moment along the journey?

Honestly, seeing him walk for the first time. We had no idea if he was going to ever walk . But APT pushed him and I will never forget my sister’s face when he walked to her for the first time. We both teared up. We are so invested in our kids that when they have a break through like that, we just can’t hold back the excitement. It’s just something I will never forget.

What advice would you give other parents who face similar situations?

It’s not an easy road, but it is the most rewarding! Really! It’s so tough, but when they have a breakthrough, you can’t hold back the excitement.

Speech Therapist, Kayla Sergesketter sees Simon at APT. We asked her to share a little about her journey with him.

How long have you been working with Simon and what improvements have you seen?

I started working with Simon at the start of last school year, so we have been together for just about 1 year now. Before I started working with him at his preschool (Carriage House), he saw several other therapists through APT. When we started working together, I could immediately tell that Simon was a very bright little guy. Simon does not communicate in the “traditional” sense. He does not use oral speech to communicate; instead, he uses an AAC (augmentative and alternative communication) device. Simon was very fortunate to receive an iPad with the Proloquo2go communication app from FEAT after being nominated by his teachers, so we were able to implement use of the communication device at the beginning of last school year. Once we started to work with the device in sessions (and his teachers and parents at home and in the classroom), it was evident to me that this was going to be life-changing for Simon. Before the device, Simon was able to communicate some things via nonverbal communication like gestures, eye gaze, vocalizations, etc., but having an AAC device has provided him with the opportunity to make very specific requests for what he wants or to communicate his own thoughts and ideas. Simon has made so much progress and is able to use his device to make requests using full sentences/questions to ask for a preferred item, answer questions with cues, and comment on objects/actions during structured therapy activities. Simon’s parents have been wonderful throughout this process as well. You can tell just by watching him that he’s been given ample time to “explore” on his device because he is SO fast at navigating between the folders to find the pictures/words that he needs to communicate something. Simon uses a combination of the picture symbols and the “keyboard” feature on his device. Even though he is only four, he can spell just about any word that he’s ever seen in a book, on a poster, or on a video. Since his spelling skills are so strong, he can use the keyboard to type out a word/response if he doesn’t have a picture symbol corresponding to what he is trying to communicate. He even knows how to correctly use plural nouns (e.g., “four cats” vs. “one cat”) on his device independently. We are starting to work on expressing basic emotions (happy, mad, sad) and answering questions in the context of daily activities and play. I can’t wait to see how much progress he will make this school year!

Describe a little about yours and Simon’s relationship.

Simon is so sweet and so much fun to work with! He does really well in a one-on-one setting and is such a fast learner. That makes my job a lot of fun! I’ve had to accept the fact that he is MUCH more efficient with his device than I will ever be, and I frequently have to ask him to show me where certain buttons are when I’m trying to show him how to put words together to make phrases when commenting during play. Just a few weeks ago, I was struggling to find a word on the device and he kept reaching over my hand and pushing the “back” button. I thought he was trying to make a request for a preferred toy/activity, so I told him “Wait just a minute. Let me show you this and then you can tell me what you want to do next.” He vocalized in frustration and finally I realized that he was trying to help me. As soon as I let go and let him take the lead, he IMMEDIATELY found the button that I’d been searching for. Simon never ceases to amaze me. He does something every session that makes me sit back and think, “Wow, this kid is so smart!” I love learning with him and I can’t wait to see him continue to grow and continue to amaze me. I also hope that his story is a positive example for parents who might be hesitant about the possibility of an AAC device.

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