Apraxia, special ed, and grad school. One woman’s remarkable tale.

One day I was perusing The Mighty to see if any new apraxia articles had been posted, and I ran across an article by Kelsey Belk, a graduate student studying to be an SLP.  I was so inspired by her article I just had to reach out and thank her.  I found her on facebook and saw that she was currently attending the University of Northern Colorado! I live in Colorado! Can anyone say coincidence, and as a reminder, you all know I believe they are signs and so I took it as a green light to contact her.

Kelsey, thank you so much for writing that article!  I plan to save it and have Ashlynn read it one day.

Let’s start with what you remember about speech therapy? When did you know you had apraxia?  Do/did you have any co-morbid disorders aside from apraxia?

I was diagnosed at age 2 with apraxia. I also was diagnosed with SPD and dyspraxia in my early toddler-hood age as well. In late elementary school I was diagnosed with ADHD and Oppositional Defiant Disorder.  As I am getting older I keep getting diagnosed with more psychiatric and learning disorders. I really want to do research on the possible relationship between childhood apraxia and a later diagnosis of psychological conditions!

What was your school experience like?  Could you tell us how you did academically and if it affected you socially?

I have always been a very highly motivated student and am a huge social butterfly – I actually cannot stand the idea of being alone. In elementary school I did rather well with the accommodations the school provided. It wasn’t until later that I realized how big the gap was between my peers and I, especially in reading and writing for me. In high school I started to receive worse grades and this really negatively affected my self-esteem because I didn’t understand why. I felt like I was putting in double the effort than my friends, but always got worse grades. This is when I went back to get more accommodations and was re-evaluated and was told I had all of the same results as a severe dyslexia case, only was able to read rather fast therefore my poor decoding/reading/spelling/phonological awareness was tied to my apraxia. Ever since then I have been receiving extra help such as a note-taker in class and all my books on an audio file. It is not perfect, especially in college. Most of my peers will skim read, but I cannot do this and have to sit and listen to the entire 100 page textbook chapter – but it still makes it much easier than without the accommodations. Overall I have been very successful in school, but it has definitely been a huge struggle.

My social life is more difficult to describe due to some of my co-morbid diagnoses that affect social relationships. In elementary school through high school I had amazing friends, although seemed to change friend groups frequently to find these friends. However, I also had really negative relationships. I was terrified to talk to adults because they could never understand me – which affects me to this day. Kids were always carefree and often did not even notice a difference. I did have some bullies though – I remember particularly having kids make me repeat things I could not say (like rabbit and railroad). I did really well to not let this get to me though! When I got to college I met all these new people from all over the world. This led to more issues with people not being able to understand me, and I often got asked “where is your accent from?”. I never had an issue making friends growing up or now, but I do have issues with some of the less accepting people. But, it showed me who the good people were and has allowed me to make amazing genuine friends that I may not have found otherwise!

How has apraxia affected your life?  Do you still have residual struggles?

Apraxia has definitely shaped me to be who I am.  When you have to put in so much effort just to play “catch-up” at school, it will definitely change you. I had one speech therapist that I loved, but many I did not like which made me not like school on speech days. It has affected me academically and socially, as described above. I am lucky to have had great support systems growing up that allowed me to succeed academically and made me want to go to college. I know that this is not the case with many special ed kids, because you just get so burnt out. It is exhausting to act “normal”. Even to this day I don’t think my professors understand that half of my cognitive energy goes to my talking clearly, focusing, and reading – so in class when I have to take breaks I really need them. I get home completely exhausted everyday, and then have to focus on homework. People forget that disabilities don’t disappear, and it is a constant struggle. I definitely have residual struggles, like mentioned I get asked where my accent is from or I am asked to repeat myself often. Most noticeably, it is in my reading or SLP tasks, because that is what I am studying. Apraxia has greatly affected my self-esteem – I refuse to talk on the phone, get defensive quickly about my speech, and still get scared to make presentations/talks. Last year I decided to go back to speech therapy to try to fix these speech errors, and made some progress on the ‘ai’ vowel however I am to the point I am just going to accept these speech errors as part of me.

What made you want to become a speech/language pathologist?

I always wanted to work with kids, but did not really want to be a teacher. I became very interested in this field and just stuck with it! I particularly love the Deaf/hard-of-hearing population. I think it is great to help someone communicate – as social connections are so important. I also have felt that the current model is not often what is best for the child – and I hope to change that. I feel like this field overlooks mental health way too often, even though it is so hard being a child who is different. I hope to work to combine the two fields more to help children succeed in every part of their life – most importantly making them feel valued and happy. I also think we often assume that children need to be like ‘us’ – look like us, talk like us, walk like us, etc. I don’t think this is always the case. I think it is important to see the child as an individual and help them succeed in the modality best for them. For me, I need accommodations such as audio books – no amount of therapy would fix my problems. For some kids this may be ASL or an AAC even, so I hope to change the view so speech therapy is actually centered around the kid.

My daughter is 7 and currently struggles with what seems like every motor task.   What advice would you give her and all the other kids who struggle with apraxia and related learning disorders?

I think it is important to not compare yourself to others. The school system is set up to where everyone is pressured to be at this perfect level – but that is not real life. In real life everyone has strengths and weaknesses. I know that I will always have weaknesses in these areas – and it will always come back (such as driving – it is so hard!). But, I also have learned to find my strengths – which are ones you probably share. I learn to persevere – when someone tells me I can’t so something I work as hard as possible to show him or her I can. I am creative – having disabilities makes you find new and creative ways to complete tasks. And most importantly, I gained strength in having empathy. This one seems so simple, but is one so many people lack.  Just remember to never give up – I did. I dropped out of speech in 6th grade because I wanted to be normal and I regret it. In the words of Taylor Swift, “haters are gonna hate hate hate”. Don’t let other people get you down, do it for yourself! Whatever you accomplish in life will be perfect, as long as you keep loving yourself for who you are.

What advice do you have for parents?

Accept your child for who they are. Yes it is good to practice correct motor tasks and speech at home, but also remember they are kids! They need a break and need to be able to talk to you without being corrected. Find a balance between the two. Let your child make decisions too – explain the IEP to them and let them give their important in what they want to learn and work on. And do not be ashamed to seek out mental health help (if needed)! There is absolutely nothing wrong with therapy; it can help your child grow in self-esteem and self-confidence. Also remember to not put all the pressure on yourself, you child goes to an SLP/OT/PT/specialist for a reason, just enjoy being a parent!

There is so much good advice in here Kelsey! Thank you so much for your candor and honesty.  You sound so much like my daughter.  She’s a huge social butterfly too, and works harder than everyone else around her.  You give me so much hope for her!

 

 

 

 

 

 

 

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