Help Me Grow

Since our referral from the DDBP, we have been in contact with the local Help Me Grow office to begin therapy for Sam's speech delay.

Help Me Grow aims to identify and serve children under the age of three with developmental delays and disabilities, as provided for under the federal Individuals with Disabilities Education Act (IDEA). Throughout Ohio’s 88 counties, local Help Me Grow programs communicate with parents, doctors, hospitals, child care providers and other community agencies to identify children with existing developmental delays, or those with medical diagnoses with a high probability of delay. 

Parents and caregivers with concerns regarding their child’s development can have their infant or toddler evaluated by an interdisciplinary team at absolutely no cost to the family. Children are evaluated for delays in the areas of adaptive, cognitive, communication, physical, and social-emotional development using appropriate diagnostic tools. Should intervention be deemed necessary, individualized services are provided to the child and family through a Service Coordinator who guides the family through every aspect of the process, from program entry until the child transitions out by age three. 

The first meeting last week was an informational session with our service coordinator who explained the program, took general information about Sam, and conducted some basic observation of him. During the meeting she mentioned a couple of times "if he's accepted", which left us wondering if he was delayed enough to be able to receive services. When pressed, she couldn't say definitively but felt from what she learned that morning that he would be entered into the program.

This week our service coordinator returned with an occupational therapist to conduct a more thorough evaluation of Sam's capabilities. This was similar to the one at the DDBP where they handed him toys and asked him to follow simple commands. Honestly, I wish each agency could just share reporting from a single evaluation. It's not that they are difficult, but it just delays us actually starting therapy since all this has to be done first. 

This would be Sam's third eval, and all of them come to the same conclusion -- no medical diagnosis for any delay, but he is behind in verbal communication and borderline behind on cognition. He was accepted and will be working with a speech and occupational therapist to help get this boy talking.

The Help Me Grow team will come to our house regularly to conduct sessions at a time that both Michael and I are available (7:30am) so that we can observe and learn the techniques they are using with Sam. 

It has been 6 weeks since Sam's pediatrician first recommended evaluations and services for Sam, and I think we are finally through all the preliminary steps to actually start therapy. Last week we took Sam to his first speech therapy session at the children's hospital, and we'll continue with those every other week, along with the home sessions with Help Me Grow. 

Many people we talk to say the same thing we have always believed, that he's fine and developing at his own pace. However, while we also feel that way, we are grateful to have all these resources to begin early intervention with him. We feel that the early intervention will be key to keeping him from falling further behind and will better discover and serve his most effective way of learning. We're so glad that our pediatrician didn't take the wait-and-see philosophy to see where he is in 6 months before encouraging further action.

Meanwhile, just in our home interactions with him, we can tell he is communicating with us more, but just not using words. He loves to bring us our shoes or his shoes to tell us he wants to go outside (and is insistent that we put them on). He loves playing hide and seek and chasing after his brother. He has begun doing arm motions with songs like Patty Cake and Wheels on the Bus, and excitingly, the other day it sounded like he was humming the tune afterward, which would be a first. (There were four witnesses and all agreed!)

We care continuing to work with him on following instructions, reading to him and pointing to specific pictures, using sign language and singing. We want to also look into play group therapies to give him interaction with other children. 

We are so anxious for every little sliver of progress, so I am attuned to each new, minute thing he does. I am hopeful that between both his therapy programs we can look back in 3 months and already see notable progress.

27 Hour Race

Leave it up to Michael and his friends to sign up for something this crazy -- the Tri 4 Freedom 27 Hour Triathlon. 27 hours. It's a team event, capped out at 16 teams. Perhaps the guys missed the note that said there was no limit to the number of team members on a team, which makes it all even crazier that Michael's Team "Swim, Bike, Run. Beer" managed with just 4 people. Four. Other teams spread out the distance and hours over 10, 12 people... nope, not these guys.

The race had no set distance, just go as far as you can in the allotted amount of time, and theoretically the team who covers the most distance in the time wins. That is, wins if anyone was actually keeping track of such things. No race numbers, no timing mat, no GPS to hand off from athlete to athlete. The only rule we could figure they enforced was that bike helmets must be worn during the ride.

So, this endeavor kicked off on a beautiful morning outside of Lexington. The swim (in a 25m pool) lasted from 6am to 8:30am, wherein one teammate must be on the course at all times but they can switch racers as frequently as they desire. Following the swim was the bike on a 10 mile public trail... for 12 and a half hours, ending at 9pm. From there, in the dark, the runners headed out with head lamps on a one mile loop. If you're keeping tally, this would last for the next 12 hours, ending at 9am the next day.

If you haven't guessed already, it was a pretty low key atmosphere. The transition area was filled with team canopies with their food and supplies, tents and hammocks spread around the grass, some courtesy food for the athletes and a DJ.

I went to the race site after work with Sam and Adam to check in on the guys as they were wrapping up the bike portion. I popped in again around 11pm to find Michael catching some zzzz's in a hammock. (They broke up the run into four 3-hour runs so that the could all get some rest overnight. Michael's run was from 3am-6am...)

Saturday morning I came back over with Sam for the big finish! (It was pretty uneventful.) The race director asked all the teams to do the last loop together in solidarity.

Sam running it in.

Finished! Bet you didn't know the timing clock could go so high.

Supporting Michael and the racers in training and racing is a favorite thing for me. And we love having our kids with us in the race environment.

Get used to this, kids, this is what we do. (or did... need to get back to doing.)

Sam has been a part of a few 5ks but this was his first big race.

There's talk that they will do this again next year, and who knows? Maybe I'll just be crazy enough to join them. I've already committed to the 12-member team, 200 mile Bourbon Chase in October with Michael, my sisters, brothers-in-law and friends. I'm told it is "so much fun." 

Have to admit, this Tri kinda looked fun, too...

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Footnote. What I love about his race is what it benefits -- human trafficking. A few years ago I had the privilege of hearing Christine Caine, an Australian pastor and activist speak about The A21 Campaign and her work to fight human trafficking. Some of her stories still stick with me today. Then last year, after seeing part of a documentary called Half the Sky, I read the book (with the same name). The book and documentary raise awareness of how widespread these atrocities are and are mostly related to female inequality, whether through slavery, forced prostitution, educational rights, denied access to medical treatment, or socially accepted abandonment. It's appalling on what "modern" society still turns a blind eye to. I highly recommend the book. The HTS organization itself works to provide China with model programs and caregiver training to the child welfare system in that country. We have friends who are currently in China adopting a little girl who is partially blind and was abandoned as an infant. She has benefited from the improvements brought about by HTS.

DDBP

In following up with Sam's speech delay, we took him last week to the children's hospital's Department of Development and Behavioral Pediatrics. When his pediatrician initially referred us to the DDBP, she mentioned that it takes weeks (months, even) to get an appointment so go ahead and make it and then cancel if he seemed to be improving by then. We were very surprised, then, when they called and offered us to move our late-July appointment up. I briefly wondered if we were making mountains out of molehills again (remember the poop incident?), but we thought it best to not turn down another opportunity to seek advice and resources for Sam.

When you make an appointment for your child with anyone who specializes in development and behavior, it changes the game a little. Up til now we hadn't really been worried about him, figuring he'd catch up at his own pace, but being in a facility where most patients have mental disabilities or behavioral issues, I had to consider the possibility that his learning disability could be something more serious.

As a parent, you just want your child to be perfect. No, better than perfect. We want to show off his latest discoveries and abilities. Look what he can do/say! Isn't that adorable? And, oh, he can now do this, too! And here we were suddenly wondering if we'd been downplaying his inabilities as anything more than being simply delayed.

Sam was measured and weighed (32" long, 24.9 lbs) before a whole team came in the room -- the pediatric specialist, a nurse and a physical therapist with a suitcase. And they were all wonderful! So fun and kind and eager to play and interact with Sam. They quickly set to work unpacking all sorts of little objects and toys and began encouraging Sam to perform certain movements through play to analyze what he could and could not do while also noting his general behavior and tendencies in a booklet.

Sam, can you put this peg in this hole?
How about these blocks, can you stack them?
I hid a toy in this box, where did it go?
Can you fit these shapes into this puzzle?

The nurse and PT led the interactions and were noting his accomplishments and weaknesses in a chart. All the while the doctor was asking us general questions -- does he point to items, does he remove his shoes/socks by himself, can he follow simple commands?, does he make "vroom" sounds when he's pushing around a car?, etc.

Sam was a trooper. Five adults reaching for things, shaking objects, vying for attention, trying to get him to perform the various functions... for nearly an hour! After about 45 minutes of this stimulation (and nearly time for his standard morning nap), Sam went on strike. Ha! He did great.

As the team excused themselves to compile a report (unlike speech therapy, we actually leave with a report!), I felt really good about what Sam had been able to do. I never saw the team show any concern. I wouldn't be nervous about their findings.

The team had evaluated Sam using the Early Learning Accomplishment Profile (ELAP) which assesses his skills in six area of development:

• gross motor (crawling, running walking)
• fine motor (picking up small objects/holding a spoon/etc)
• cognition (following commands, learning, remembering)
• language (verbal and non-verbal communication)
• self-help (eating, helping dress, etc)
• social/emotional

Here are his results (chronological age 18 mos):

Gross Motor: 18 mos
Fine Motor:  10 mos
Cognitive: 12 mos
Language: 9 mos
Self Help: 15 mos
Social: 18 mos

I loved that they also noted his strengths -- affectionate, social, enjoys interaction, motivated to move, sought comfort from parent, non-verbal communication skills, healthy.  That's our Sam!

Overall, they were very optimistic about his current state and his ability for his skills to catch up to the developmental milestones. She didn't really recommend speech therapy as he may not get a whole lot out of it as his age, but we may try it and see how it goes. They prefer play-based therapy. She referred us to a federal program called Help Me Grow and the Parent-Infant Nurturing Group at the hospital, both offering therapeutic play with a specialist. She also suggested play groups, gymboree, kindermusik or other similar programs. Daycare is also an option because he would be in a learning environment with other children his age. The idea is that he already knows how to communicate with us, but if he is around other children he will need to find a way to communicate with them. Plus, seeing other children do skills is a great motivator for toddlers.

They were very complimentary of our boy and encouraging in his prognosis. With the right interaction and focused attention to his needs, they said to give it six months to see how far he comes in that time. We'll be back in December for a follow-up. There was no mention of a hearing exam.

Sam has rarely demanded of our attention, often playing by himself happily, and so, we often let him do so as we tend to Adam's more verbal requests. But now, in the three weeks since Sam's 18 month appointment we've had more intentional play with him, and we can already see progress. It's very exciting. He signs "All Done" now, he claps, he does the arm motions for Patty-Cake, he's working on new sounds and mimicking, and he is understanding commands better. Michael and I are reveling in all his discoveries, and we feel like first-time parents as we watch him in wonder as he accomplishes even the little things. Sam is clapping! Go ahead, ask him to clap! Watch him turn the light switch on and off. Did you see him sign "All done"? Isn't that adorable?

If nothing else, we left there feeling reassured that our instincts were correct. Sam is learning and developing at his own pace, and we have renewed intention to play and interact with him at every opportunity. We realized that he learns differently than Adam, and it's so fun now to approach his development in the way that he needs and to encourage him every day. Now the fun really begins -- watching him thrive.