My Imaginary Hassle Ended Up Being No Hassle At All

Yelp, it’s that time of the week again. Another fun-filled day of physical and occupational therapy for Noah. As you can see in today’s video his physical therapist is using treadmill training to help him learn to walk. Noah’s actually been doing it for a few months now, and it’s been neat to watch his little feet take more and more steps with each visit.

Therapy ≠ Hassle

If you’ve been following our story than you’ve probably noticed that we post a lot of videos from Noah’s various therapy appointments; that’s because we bring him to therapy 2 -3 times a week…so therapy has become a big part of our life. In fact, as often as we visit I feel like we should have our own parking space by now. 🙂

When we first started taking Noah to therapy I wondered how long it would be before all of these trips became a huge hassle. He has to be here several times a week, and it isn’t like we have buckets of spare time just sitting around our house. The actual therapy sessions are the easy part (for us at least.) It’s the getting ready, driving across town, fighting traffic, scheduling our day around his appointments, and trying to remember to put shoes on his feet (this little boy does not like shoes) as we hurry out the door that’s difficult.

boy down syndrome wearing shoes on treadmill

We have to super glue his shoes on him while he uses the treadmill!

But you know what, now that we’re a little over a year into this journey, I can honestly say it’s no hassle at all. Sure there are days when we’d much rather stay at home (and days when we actually do stay home! Shhhhhh….don’t tell anyone) and lots of days where we don’t manage to leave our house in time and end up being super late, but at the end of the day I don’t mind one bit. Really I don’t. I’m thankful for the investment these occupational and physical therapists are making in our son. I’m thankful to live in an area with so many resources at our fingertips. And I’m thankful that day by day, step by step Noah is growing and developing. It’s amazing to see this little boy grow up….he makes me drunk with pride! 🙂

How many times a week is your child in therapy? What’s one thing you (at frist) thought would be a hassle that now you count as a blessing?

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About Rick Smith

Hi, I'm Noah's Dad and I'm passionate about giving the world a window into our life as we raise our son who was born with Down syndrome. I also enjoy connecting with other families, so let's stay connected.

Comments

  1. wow! therapy is sure a lot more advanced than it was when Mika was Noah's age 🙂 Looks like he is having a lot of fun too. My favorite (or one of) therapies with Mika was suing beach towels under each leg to teach her to crawl…we used to laugh so hard it's a wonder we ever got any "work" done 🙂

    • Yah, they do some pretty fun stuff these days. Some of the kids on our facebook page do horseback riding therapy, water therapy, and a ton more. It's pretty neat. How old is Mika now? And that crawling exercise sounds fun! I don't think I know what it is…tell me more! 🙂

  2. oops…that would be "using" and not "suing" (poor beach towels) haha!

  3. Normally I agree that therapy (between our two there is 16 hours a week) is no big deal. BUT in January we had 4 week days that didn’t have something on it and many days that had double our normal stuff. February is just as bad with some days tripled. So right now we are all a little beat and cranky. After all the specialists are done and we reach a more normal run, it’ll be better.

  4. KylieandNathan Paskett says

    Wow! Three times a week! We’re in a small South Australian town. Felix has speech and physio once every couple of months. He used to have Occupational Therapy every couple of months too, but there is no OT in town now and we are about to lose the physio as well.   Lucky I guess that we are experienced parents (7 other kids), so we do a lot of activities with him using our own initiative, and the DS Society send us copies of the activities they are doing with the other babies Felix’s age which is helpful.   We don’t even have a paediatrician in our town!!!       We are very thankful that Felix has been ridiculously healthy and is progressing so well, although we will most likely move back to the city when he gets older so that he can participate more in activities with other kids with DS as well as other mainstream activities 🙂

  5. My son, Anthony, has speech therapy, p/t, and his teacher..they all come to my house! no hassles there but for a long time, we use to drive about 40 minutes away for his playgroup and p/t- that was a hassle but everyone we've worked with has been wonderful- he has progressed in so many ways!

    • Playgroups are fun! We used speech therapy when Noah was little for some of his feeding issues, and we're about to get ramped back up on that. How old is your son now? And what sort of things does he do during his pt and st?

    • anthony is 2 1/2 yrs old…pt is mostly working on balance and climbing and bouncing with him-he is not much of a bouncer… speech they work on more receptive than actual talking,but i am hoping to get him morespeech therapy for him…Noah is adorable and i love your website!!

  6. Our Michael is three months old and has OT once a week and PT once a month. He is doing super! My husband and I are both PT's so we work on a lot at home and it makes a difference. We try not to make it too much of a boot camp for little Michael! 🙂 I love working with the pediatric therapists and I can truly say as a member of the profession and then on the patient end as well, that therapists truly love what We do and are genuinely interested and invested in our patients and feel priviledged to be given an opportunity to help improve the quality of life for those We treat. 🙂 I love watching Noah shine in PT!

    • Thanks so much for the kind words. And wow…! and mom and dad who are PT's??? What a lucky little boy! Are you guys his therapists, or do you have separate pediatric therapists? Where are you guys from by the way?

    • NoahsDad.com We are in San Diego. My husband and I have worked primarily in adult orthopedics although I have done a specialty in aquatic therapy for both adults and pediatrics. I am anxious to get Michael into the adapted infant swim program at the hospital I work at. We have had all of our care so far at Rady Children's Hospital in San Diego. They performed his surgery and we spent three weeks in the NICU and have gone back post discharge for cardiology, HENT, PT and OT. They also have a Down Syndrome clinic which provides multi-disciplinary evaluations all under one roof to help facilitate referrals for whatever services may be needed. We are very fortunate to live near this hospital. Michael is doing so well and is just a delight (: He is holding his head up and giggling now and we love celebrating every little accomplishment he makes (:

  7. Great post! We live in a rural area, services are not ample but they are good at teaching us what to do. I did not go back to work after James was born so I could give him everything I could. We get speech once a month (although she pretty much just listens to him now) We just barely got PT/OT bumped up to 2X a month. The therapist comes to our house. Our pediatrician is going to also refer us to our local hospital once a month for PT there. It is not a hassle, because we have had the luxury of staying home for all of the visits. I have wanted more but they keep saying he is doing great.

  8. Great post! We live in a rural area, services are not ample but they are good at teaching us what to do. I did not go back to work after James was born so I could give him everything I could. We get speech once a month (although she pretty much just listens to him now) We just barely got PT/OT bumped up to 2X a month. The therapist comes to our house. Our pediatrician is going to also refer us to our local hospital once a month for PT there. It is not a hassle, because we have had the luxury of staying home for all of the visits. I have wanted more but they keep saying he is doing great.

  9. Raylene Logan says

    My daughter, Kara-16 months, has OT and PT therapy once a week. Speech therapy just started this week. I would like to have it more often, but am grateful for all they do for us. I wouldn’t have any idea of what to do otherwise. One of the great things, is that they come to our house…I don’t have to go anywhere. They will come until she is three years old. Another great benefit is that since it’s in our home, my other children participate. They take turns being present during therapy, and what a great advantage for all the kids to know what their sister is doing in therapy, because then they do it with her when they are playing with her. So even if I don’t have time, someone else is always working with her. Nothing’s cuter than when I hear my 4 and 6 year old daughter’s say “Let’s play therapy girls!”, or when my 17 year old son has Kara hold onto the back/bottom of his shorts and he “walks” her around the house. Love it.

  10. Raylene Logan says

    My daughter, Kara-16 months, has OT and PT therapy once a week. Speech therapy just started this week. I would like to have it more often, but am grateful for all they do for us. I wouldn’t have any idea of what to do otherwise. One of the great things, is that they come to our house…I don’t have to go anywhere. They will come until she is three years old. Another great benefit is that since it’s in our home, my other children participate. They take turns being present during therapy, and what a great advantage for all the kids to know what their sister is doing in therapy, because then they do it with her when they are playing with her. So even if I don’t have time, someone else is always working with her. Nothing’s cuter than when I hear my 4 and 6 year old daughter’s say “Let’s play therapy girls!”, or when my 17 year old son has Kara hold onto the back/bottom of his shorts and he “walks” her around the house. Love it.

  11. my grandson starts PT tomorrow! He was released as fit for duty after heart surgery and your post really help us know what to expect and look for in a successful session and therapists! Thanks

    • Wow…that's great! How old is your grandson? Also if you take a look back we've been posting therapy sessions for a long time ..in case you wanted to see some of the earlier ones. I'm so glad to hear his heart surgery went well. What sort of heart issues did he have?

    • Rick Smith My grandson Chapman (we call him Chappy) is 8 months old today. He was born with tetralogy of fallot and also had surgery at 2 weeks for a duodenal stenosis. Heart surgery was performed on December 2, 2011 and all issues were successfully corrected. Praise God! We have been reading every post and find it our guidepost for so many questions and steps along the way. Many of our friends read too so that they can be better informed and as a sign of support for families like us! You are a lifeline!

      • Hey Carol, I’m not sure if you are still checking this, but I believe you guys are from Augusta, GA. Is that correct?

        If so, I’d love to connect with Chappy’s parents about something.Would you mind asking them to send me an email. Thanks so much!

    • Carol Mathias awwww..happy 8 month birthday to him! And I like rally like the name Chapman! Very cool! Thanks for the kind words about our site, 1 of the reasons for starting it was for just what you said. I'm so glad you guys found it. I'm so glad to hear he is doing well! Where are you guys from by the way?

    • Rick Smith We are from Macon Georgia, which is about the center of the state and 90+ miles south of Atlanta. Not sure if we have the greatest of resources available in this immediate area, but will drive to Atlanta to "fill in" and get the PT and OT we need.

  12. Daniel is a week younger than Noah and has has PT twice a week and OT once a week.  He is about to start feeding therapy twice a week as well.  We are seeing big benefits and feel it is worth the effort.  As parents we are learning how to make our playtime have a huge payoff with what we learn from his therapists.  While some days can be a bit tiring, Daniel loves going out and seeing people.  It’s been great to watch him win people over with his extreme cuteness and my husband and I are continually impressed with what a great kid he is.

    • Kristi, it sounds like you guys are doing great things.  You guys are able to get busy when that feeding therapy starts! 🙂 Noah had feeding therapy also in the start (I have a video of his sallow study on my site…) but thankfully after he got his eating issues down, we were able to cut feeding therapy out. (Although now we’re about to start up with speech therapy!) 

      What sorts of things of you guys down feeding wise thus fan? Have you used (or heard) of the Z-Vibe?

      • Dan didn’t have any trouble with sucking, but moving to solid foods has been challenging so that is what our sessions will focus on.  We’ve had some success with scrambled eggs, refried beans, and mashed potatoes but Dan’s tongue doesn’t want to move anything more solid so he resists.  Our therapist showed us the “J” method of feeding to help his tonque learn to move the food back and the Nuk brush for stimuating and encouraging the chewing reflex.  We are going to work with those until the sessions start in a couple of weeks.  I hadn’t heard of the Z-Vibe.  I’ll ask our therapist about it.  Thanks! 

        • Kristi: I am SO with you on the solid foods challenge! I’ve learned more about the difference between a “munch” and a “chew” and what “bilateral movement” is than I ever really wanted to know! James is 17 months and he’s been eating solid foods since 6 mos old…but we’re still on baby food. We’ve finally made it to stage 3 (or equivalent homemade) and feel pretty awesome about it. I didn’t realize how great it was to give a kid a cup of Cheerios to snack on until I couldn’t do it! Good luck to you! Celebrate all the small victories! I hadn’t tried scrambled eggs with James; thanks for the idea! Our therapist also uses the Z-Vibe and Beckman stretches (somewhere else on this site, I believe). That, and a lot of patience!

          • As I’ve shared Dan’s challenges, it’s amazing how many other kids (not even just kids with Down Syndrome) have them too.  I love the kinship on this blog but I am also thankful for all the other day care parents and care givers that share all their parenting challenges.
            ps.  I’ve tried Cheerios and Fruit Loops even. Dan seemed to like organic animal crackers the best, but that just meant he would take a bite a spit it out.  Gotta laugh.  I’ll ask about the Beckman stretches too.  Such great tips!

  13. Grace has speech/feeding therapy every other week, occupational therapy about every three weeks (eating and sleeping), plus a nutritionist (to monitor her weight gain and hypoglycemia) once a month. Thankfully, through our state’s early intervention program, they all come to our house at no cost. Now that she’s two, she’ll start a play group soon through the same program (Kentucky calls it First Steps).

  14. Maddison Jacobs says

    he is doing great how old is he? I look forward everyday to see what he does next m it brings a smile to my face.hugs to noah for the great work.

  15. Have you tried chiropracty?  I think I spelled it wrong, but my daughter has been going since she was born and I think, I know it has made a big difference in everything, I’ll write more later…..

  16. asd

  17. It’s not a hassle because little Noah is helping you. The more you do for him, the more you learn and grow as a man, father, human. He will help you to see the good in others more easily and he’ll teach you how not to overlook others. (not that you ever did, just that you’ll be more keenly aware)

    He’ll teach you how to not take things for granted. He’ll teach you about life on a new scale. While most people live life on a scale from 1-10, you may get to experience a much larger scale.

    Thanks for posting!!

  18. Renae Williams says

    Damitri has therapy 2x a week for an hour each…the hassel is waking up but once were up were ok. he loves his tharapist!!! they hav so much fun 2gther!!! if she doesnt hav an appointment after his hour is up she’ll keep him an extra 15-30minutes!!! how cool is that?!

    • This is super awesome! Noah’s PT does that for him also. That’s awesome that he goes for an hour! Noah goes to 4 – 30 minute sessions a week. I’m glad you have a good therapist now afte telling me about that one that you said “gots to go!” ha,ha!

      It sounds like you are doing such a great job with Damitri, it’s a blessing to get to hear all of your updates! I always look forward to them.

  19. As a retired pediatric OT, I have often asked parents where they think all these OTs, PTs, and SLTs come from. Many of us found our professions because somebody we knew or loved needed the services of those professions. We were either impressed with the therapists we knew or we saw the incredible needs that weren’t met and wanted to do our part. Not all of us have worn your shoes, but many of us have walked down similar paths. We do understand that some days, we are just about the last people you want to see. That’s life. Take a break and come back refreshed.

    • Thanks for all you do, and it sounds like you get it! 🙂 

      Did you work with a lot of children with Down syndrome in you carrear? From my understanding a lot of people with Down syndrome didn’t go to therapy all that much several decades ago, and now there’s a lot more early intervention. What has been your experience with that? 

  20. My Abbie started OT yesterday… I was a lil nervous cuz I didn't know if I should jump in and help or sit watching or if I would be in the way… but it turned out to be soo much fun for us both! I felt so helpless cuz everything I did for abbie wasnt working like it did with our other daughter.. the sitting and walking.. but now I learned more about abbies muscles and how she works them and have a better understanding what we both are in for. its wonderfull and she loves her OT. Next week we start the PT, Abbie will have OT, and PT once a week for a hour each day.. what's really nice is they come to our home!

    • I wondered that, too, in the beginning: Do I sit by and watch, or jump in? Some days it's a little of both. As James gets older, I'm trying to step back a little bit, realizing at some point he will be going in by himself. But I really do learn so much by being in the room with him!

    • Deanne Prucha says

      In most areas, early intervention (or services provided to children under 3 years old) are meant to include the parent or caregiver. If you think about the number of hours in a day and in a week, then realize that your little one is only getting therapy for 1 hour each week, you'll know what we always said to be true…Mommies and Daddies are the first and most important teachers in a child's life! So, yes! You should be part of your little one's therapy. Ask questions, learn techniques, ask for ways you can work on the same skills at home and participate…that's the best way to be able to carry-over the activities on the days that you aren't in therapy, but want to keep up the improvement!

  21. Now that Em is in school she gets her therapies there and she has a  wonderful team. But when she was in EI she had PT OT And ST, at home. PT and ST weekly and OT every other.  The thing that I loved was they came to me, and it forced me to clean before they came.  LOL As Emmie got older she dropped the PT at home and went to a PT play group that offered more challenges. And she went to and OT/ ST play group that was great because it was like a day of school condensed into one hour. She loved it ! And I think because it resembled her day of school her transition from EI to school was very easy.  I was spoiled by everyone coming to our home for so long , but in time I adjusted to having to leave the house for Em’s therapies:)
     

  22. We have Physio once a fortnight and she comes to us!  Not a hassle at all! Any other like speech will come to us too! xx

  23. our Ethan is almost 20 months old and the PT and OT come to our house on average once every 3 weeks. He gets a lot of in home therapy trying to copy what his 3 1/2 year old sister does

  24. We just had a son diagnosed with Down Syndrome at birth.  Your blog has been such an encouragement to me.  Thank you. 

  25. James has 4 hours of therapy each week, though it's split up into three different days. ST/OT/PT and Developmental. We live in a rural area, but have a GREAT ranch just outside of town where our therapists work, called @Hope Landing. Developmental comes to the house. As a person who likes to go with the flow and not really have a schedule, I thought that all these days and times (and wearing a watch!) would be a real hassle. And some days it is, but it turns out I do okay with a schedule. And I'm really grateful for the structured time spent with James. As an unstructured person, he would not get that as much if it were just left up to me!

  26. Hello Noahs dad, you know something I live in New Jersey I saw your videos of physical therapy and I like how she works with him, here the therapist come to my home but he don t do the exercise like that, he dont bring any machine, nothing just the ball, is some especial place were you bring your child, you can let me know please because he s not walking yet and he has 2 and half years old. thank you so much
    

  27. Well, mine are past therapy age, and although they don't have down's they have similar charactoristics. My older one also had a mild fine motor delay. So at one point I had all three in OT and PT, plus preschool for the twins. Preschool was 2 mornings a week and I went with them because the preschool taught me a lot about working with them, and since they didn't walk until about 3 an extra set of hands was welcomed. The PT and OT were great about schedualling our appointments together and back to back. So one twin would be with her ot and the other with hers, then they would go to their own pt's or vice versa. The older one was on a different day, so I was out pretty much most of the day three times a week. I used to tell people that instead of being a soccer mom I was a therapy mom. But it becomes your normal and you just sort of do it. At first it's a bit of a pain, but then you see the progress and you know this is why you do it. Funny thing mytwins were about 2 when we started and we went for a year. They are 14 now, and they still remember going to their "play place with Bob and Helga", that's what they call it.

  28. I’m really surprised at the small number of therapy hours that the people posting have for their children. I have to assume that most people have very young kids and do not have special education services or speech therapy.  In my area (Monroe County, NY) we are doing a lot of intensive therapy with our preschoolers through early elementary.  It’s common for a child to have 5-10 hours of special education, 8-12 hours of speech therapy, 2-4 hours of OT & PT (each), and 1-2 hours of music therapy every week!  Imagine if this was all in your house!  Yes…we set all of this up inside of the house of a 3 year old and their family (occasionally a few 2 year olds).  As a team, we basically take over an entire room (or basement) of the house, and turn it into a one child school.  I know it sounds crazy, but you give us a few months of your time and we give you and your child all the potential we can see in them.  And we raise the bar H-I-G-H!  It’s definately not everyone’s cup of tea, but intense therapy does have it’s benefits. 

  29. Karen Spinelli says

    My son Luke is now 22 and rides his bike or walks all over town!  He’s got the best calf muscles in the family from all his exercise!  Amazing when I remember his low muscle tone at birth.  He had a lot of therapies, for a lot of years, and it shows!  All the work pays off!  And taking a day off occasionally and staying home works too!  Best to all of you new parents, it’s a bumpy adventure, but the best one ever!

  30. Scott and Vanessa says

    We actually look forward to any and all the therapies.  It is fun to see the passion and dedication of our therapists.  We have a 5 hour drive (one way) every other week for OT and ST and a 1 1/2 hour drive (one way) for PT.  It’s worth it though.  We love seeing what new things the therapists can make Enzo do.  It’s so much fun!  

    You are right, it is not a hassle and we love it…..oops…he just woke up from his nap.  Will write more later.  xoxo

    • Scott and Vanessa says

      Therapy is special “Play” time and Enzo truly loves it.  It gives us a chance to learn something new while Enzo gets to “play.”  It has opened our eyes to everything that is possible!  And there is so much possible!

  31. Wow. Just found your blog love it. But makes me sad as to how little therapy the kids get here. Speech therapy in my area = 6 weeks on, 6-8 ( now more like ten due to non filled maternity leave) off. OT about the same, Physio a little bit more intense but the parents have to go to clinic, very few home visits.

  32. I feel blessed with how much therapy my daughter Joslyn (23 months) receives. New York is one of the best states for EI so I’ve been told. She gets PT and OT twice a week, speech twice a week, and special instruction once a week. The amazing part is they all come to my house. Some times (more than often) it is a bit overwhelming but I think about how how far she has come and that makes it worth it!

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