Thank you.

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Three years ago, when Liam was two and a half we had a substitute therapist at Bravehearts, Karin, to take over for the summer. I was apprehensive because not every therapist is a good fit, and the fit can make or break progression. However, within five minutes of walking Liam around the arena, she b-lined over to me, looked me square in the eyes, and asked “Has anyone used the word apraxia to describe your son?” I was stunned and said “No,” and she walked right back to Liam to finish the session. After, she began to describe what apraxia was, gave us some tools, and websites to learn more. Over the course of the summer, she was doing drills with Liam that made us all look wide eyed and shocked (like putting a tongue depressor in his mouth while asking him to make sounds-which he did not love), but also gave us comfort knowing that this woman knew what she was doing, and that God brought her to us.

The fall came and Karin was leaving Bravehearts, and so we asked her if we could follow her to other clinic 75 miles away, because when someone has the experience and the relationship with your kid like she did, you follow her ANYWHERE. For eighteen months, every Wednesday, Liam and I would drive over an hour, both ways, in silence. I would talk to him occasionally about the landscape and the big trucks, knowing that he couldn’t respond, but also knowing that nothing is wasted, and that he heard his momma talking to him.

For 18 months, I remember sitting in the waiting room, looking around at the families who were waiting for their appointments. Some of the kids had typical delays, some had more severe delays than Liam, and yet in our differences, I felt safe and at home. I watched as kids graduated out of therapy and, at the time, I was filled with both joy for those kids and their families and a mixture of hope and jealousy, not knowing what Liam’s future would hold. We would often pray “God, we know you see Liam. We know you’ve brought us to this place. We know you have our future in your hands. Please.” We couldn’t even ask for the specific request of hearing our son speak. It was too overwhelming to be that vulnerable with our faith, we knew others were praying specifically for Liam and that helped us stay focused in the present and the job at hand.

But then it happened.

18 months ago Liam began talking. Slowly, bits of words and gibberish here and there; then more concrete words emerged. Our drives into Arlington suddenly began to change. He would begin by saying “Hi” to me periodically in the car, then asking for his water, then would comment on the landscape; now we discuss the big construction taking place and it blows my mind to think back to where we began.

Which brings us to today, it was our last day at Arlington with Karin. I can’t ever say good-bye to the people that have been instrumental in Liam’s life. And our relationship with Karin is not over, as Liam is on a journey with his language and one that may find us back at Arlington down the road. But for now, we are hitting the pause button, which seems an appropriate time to say “Thank you”. But, how do you thank the woman that unlocked our son’s voice? How? I don’t know, but this is a start:

Karin,

It took you less than five minutes to see Liam. To explain what you believed to be the problem and then the solution. You often joke that you were so hard on him and that the beginning of your relationship was a love/hate one as Liam would fight you on the work that needed to be done. But you have to know he saw you too. Liam never trusts anyone that isn’t a good match for him; he just knows. He won’t waste anyone’s time with nonsense. Thank you for allowing us to follow you to Arlington. It’s been 3 years of hard work and insights and homework and deep hope that our journey with Liam’s speech wouldn’t end until we HEARD him. We can’t believe this day is here, and that God brought us to you. How do we say thank you to the woman that unlocked our son’s ability to verbally tell us that he loves us, if he’s sick, or that he had so much fun at school? We think of you all the time when we hear new ideas and words and phrases come out of his mouth, and we will NEVER forget where you’ve brought us. You do miraculous work, the stuff that turns parents’ dreams into reality. THANK YOU. THANK YOU. THANK YOU.

Much Love and Respect,

Matt, Courtney & Lee (Liam)

 

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IEP’s and an Anthem.

IEP’s and our Anthem.

It’s the end of the school year (can I get an AMEN?!) and with that comes the infamous IEP meetings. I always feel for the teachers and staff that have to call in substitutes and miss class for what must seem like endless meetings day in and day out. I do not envy them, and I deeply appreciate those who show up to every meeting and advocate for their student that  is represented by the IEP.

As the parent with a child of an IEP, nothing can really prepare you for reviewing your child’s IEP. (By the way, did you know that you have a legal right to review your child’s IEP *BEFORE* the meeting so you fully understand it and are well prepared with questions? All you have to do is ask for it!) The review is emotional and difficult as you pour over page after page of cold assessment of what feels like laser-like attention to the deficits of your child. For this reason alone, it is worthwhile to go through the IEP before the meeting. There is so much to process, and we never want to go into the meeting emotional or gobsmacked at the lists of goals. It’s hard to stay centered in the present after reviewing the assessments as your mind floats to the future and stays there while processing in fear and uncertainty. We are well aware of the area’s in which our child struggles; no one needs to tell us that he has difficulty sitting in his seat, or responding appropriately in certain situations, or that “Liam is a really great kid…”. After pages and pages of what feels like deficits, the “really great kid” part feels patronizing and insincere.

However, this is part of the process. We have to acknowledge Liam’s challenge so we can put in place accommodations for his success. I have to remember that the IEP allows Liam to learn to the best of his ability. Matt and I study the end of year assessments of Liam’s progress to figure out what accommodations he will need for next year. And while the individuals that sit around the table work with him for 8 hours a day, WE are his parents. WE have HIS best interest in mind, before rules,laws, and available resources come into play. So when we read pages and pages of challenges that Liam faces in cold report form, and the fear and tears overtake us, we HAVE to remember that this is only the beginning part of the process, and that Liam carries the end part. Liam never disappoints us with his part of the IEP process; he always overcomes and succeeds.

When I heard the song “Rise Up” by Andra Day, I both stood taller and sobbed in comfort. The only thoughts that come to mind when I hear this song is our journey with autism and advocating for Liam. And today after reviewing the IEP for our meeting this Friday, I deemed it our anthem.

https://www.youtube.com/watch?v=lwgr_IMeEgA

The chorus is the very best part and makes us stand up tall, prepared to take on the world for Liam:

And I’ll rise up

I’ll rise like the day

I’ll rise up

I’ll rise unafraid

I’ll rise up

And I’ll do it a thousand times again

And I’ll rise up

High like the waves

I’ll rise up

In spite of the ache

I’ll rise up

And I’ll do it a thousand times again

For you

-Andra Day “Rise Up”

Liam Mathew Joseph,

Your greatness can not be contained in an IEP.  We advocate for you every time we walk into that room, and you better believe the first thing we do is talk about your strengths. We control the conversation with understanding of your challenges in the light of your strengths. We help those that care for you and teach you understand how you work best and how you come to the world, and we will do this for you as long as we have breath in our lungs. You teach us daily how to “rise up, high like the waves”; you are our greatest teacher of things that truly matter in this life, and we are so wildly proud of you.

Love you to the moon,

Daddy & Mommy