2 years.
At the beginning of last year I posted a "1 year" update for our boys' journey with Apraxia of Speech. I commented then I didn't know how often I would update the blog on the topic, and it turns out, it was barely.
Ryder is doing phenomenal. The boy has picked up an incredible amount of speech in 2013. At the end of summer this year Patrick shared with me a voicemail message he has been saving since July 10, 2012. To give you a bit of background (I researched it!) - it was the morning of Ryder's last speech session with Early Intervention (before "aging out" a week later - on his 3rd birthday). Given what I say on the message, Ryder must have had a hard time having Patrick leave with his brothers (to go to work, and daycare, respectively), and having to stay home with me. The recording is primarily my voice, with Ryder "repeating" what I am saying. The most intelligible words he says are at the end:
"I uv ooo"
I love you. He couldn't say it fully, but he tried. He "repeats" other parts of the message, with a few hit and miss intelligible words, but this was the most intelligible part.
When Patrick played me the message - I had no idea he had saved it for over a year - I immediately teared up. Truthfully, I tear up every time I listen to it. My baby could not say "I love you" just over a year ago. Contrast that with his goodnight parting with me at the beginning of December:
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| At bedtime tonight with Ryder-Me: I love you to the moon and stars, and back!Ryder: I love you in the morning, and in the afternoon. I love you in the evening, and underneath the moon, and the stars, and then all the way back! I win!! |
Honestly, he did not enunciate each word perfectly, but it was 100% intelligible.
This (school) year we ended up declining the speech services offered through our school district for Ryder. It was a very hard decision (and rather infuriating), but it was the best choice for us. The school district has put up numerous road blocks and rolls (and rolls) of red tape - all self imposed. We pushed our concerns up the chain of command, stopping short at the Superintendent. Had we not had 2 more children at home still receiving Early Intervention services, and possibly qualifying for preschool services, I would not have stopped. If the obstacles are still present when (if) Harvick and Jarrett need the services, we will go further in our fight.
Harvick and Jarrett both remain nonverbal. They are very communicative, generally in pointing, facial expressions, etc.
Harvick is the more willing participant in speech practice with flash cards and worksheets. He is so proud of himself when we practice speech with him, even when he is far from the correct sound or word. He tries so hard!
Jarrett does not like flash cards or worksheets. Ever. However, we are able to "sneak" speech practice into play with him easily. He doesn't seem to mind having to practice when he gets to play!
Truthfully, we don't have a diagnosis for either Harvick or Jarrett. Nearly everyone involved with their speech is "sure" Harvick has Apraxia of Speech. However, Jarrett's issues present a little differently, and he has kept us guessing. We know his speech is delayed, but he doesn't seem to have as great of a struggle learning the correct way to make a specific sound. But, there is still a struggle. From what research I have done, Apraxia is not a "spectrum" disorder where different "symptoms" can present in each child (like Autism). There is, of course, a severity scale - ranging from mild to moderate to severe. Perhaps Jarrett is at the mild end, with Harvick (and Ryder) closer to moderate.
Both Harvick and Jarrett had ear tubes placed in July of last year. Harvick also had his adenoids removed. It's unclear how much of an effect this had on their speech. Technically, by removing the fluid, they are able to hear more clearly. For them, it did not mean a "switch" was turned on, allowing them to speak. We are, of course, happy with the decision to have the surgery completed - neither of the boys need an additional barrier in their verbal communication!
Harvick and Jarrett are both enrolled in Early Intervention, and will continue to receive in-home Speech Therapy twice a month until they "age out" (on their 3rd birthday). At that time, they will be evaluated for further services (one option is the preschool Ryder attended). Their SLP and OT (we determined an OT was a good fit for us, in helping to learn how to best engage each boy in the therapy) are both awesome. Harvick & Jarrett's SLP is different than the one we were assigned to with Ryder. While Ryder's SLP was a good fit for him in the end, we absolutely love the one we are working with now - from the beginning! Both the SLP and the OT genuinely care about both boys, and the boys love when they come to visit!
Each of the boys also receive weekly private Speech Therapy. Their SLP is the most amazing person. I know Patrick and I have put in countless hours of speech practice at home, and that each of the boys work so hard. But, I very much believe my boys' ability to speak rests very much in the SLP's hands. Our boys are a handful. Each of them, in different ways. Being smart enough to have an opinion, but not possessing the ability to verbally communicate your need, is extraordinarily frustrating. Our private SLP works with each of them to find what method(s) works best, and tailors each session to the needs of the boys at that time (each boy is seen separately). Clearly, we pay her for the service she provides, but I don't know how, really, to thank her. I tell her often, and I pray she doesn't feel it is cliche.
So, what lies ahead for our boys?
Ryder will continue in weekly private Speech Therapy until our SLP recommends we decrease frequency. He will be in Kindergarten this year (seriously, I can't believe I have a child old enough to enroll in school!). His future with "special ed" is uncertain, as I'm not sure anyone would have predicted Ryder would have made the progress he has (we were told he was extremely "severe" at the initial diagnosis).
Harvick and Jarrett will continue in Early Intervention through their 3rd birthday. They will be evaluated for possible additional services - much of which is at the directive of the school district, we get very little input. Where they attend preschool next year is largely influenced by the services they will be qualified to receive. And, we will keep them in weekly private Speech Therapy until our SLP recommends an increased or decreased frequency.
Walking through this journey with Apraxia of Speech is difficult. I have had more than a few breakdowns about it. It is hard watching your child(ren) struggle to do something that is so easy for the majority of their peers. It is heartbreaking when you overhear another student calling your children stupid, because they don't talk. But, in the same breath, I am full of pride to hear Ryder's response:
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When I picked up the boys from school today, one of Ryder's classmates commented to Ryder that his "brothers are stupid because they don't talk". I began to intervene - but, Ryder's response was so much better than my own -
"You don't have to talk to be a genius".
He could not be more correct. Such a good big brother!
(Photo from our October "brothers" picture - in our house, it's "monkey see, monkey do" with those boys!) |
Ryder understands his brothers' struggles better than I will ever comprehend. He gets it. It's hard. Of course, he is still a typical 4-year-old big brother, who doesn't always get along with his little brothers. Sometimes I'm amazed at the fights they can pick with each other, considering two of them don't actually use words to argue. They are constantly battling over who gets to play with a certain train, or whose turn it is to do a various task. However, under that, on a deeper level, they get each other. Ryder is their greatest cheerleader. He prays nightly, without fail, that his brothers "wearn (learn) to use their words to talk".
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| In a sign of solidarity, for about a week(+), Ryder has reverted to calling Patrick & me "Dada" and "Mama" whenever his brothers are around. While part of me misses hearing "Daddy" and "Mommy" (or "Adorable"!), a bigger part of me is so very proud of my baby's empathy - he wants to be a good example for his brothers. Simplifying words helps the boys with their speech. He gets it. |
A few weeks ago, as I drove home with the boys (on a night Patrick was teaching class), Ryder requested french fries when I asked what he wanted me to make for dinner. I responded, telling him that wouldn't be happening that night. Without any hesitation, Ryder asked his brothers "Will one of you just say 'french fries' - mom likes to hear you use your words, and if you will say it, I know she will buy them". He then proceeded to break down the words for his brothers - eh, feh, fech, french, i, ies (eyes), fies, fries. Harvick didn't enunciate beyond the "feh" and "ies", but he gave it a try. Jarrett clearly said "fies". And, I stopped to buy a french fry for the boys to share. Ryder knows me well. It was worth the $1.
Thank you to those that have read this post in it's entirety. The community of friends and family that have supported us, and continue to support us, with this journey are invaluable.
I'll end with a reminder of something I shared last year:
To any of our friends with young children (especially Ryder, Harvick, and Jarrett's ages) : don't hesitate to tell me fun things your child says. Or, new words they are learning. I'll be honest, sometimes it takes a conscious choice to not be sad for my boy(s), but I have never, ever, not been happy for you to experience this.
We will beat this. Again (and again!).
One-step-at-a-time.
