The first two years of Conner’s life were spent in and out of hospitals. He couldn’t catch a break and just as one thing improved, another got worse or a new diagnosis was given. It felt like we were living a nightmare and couldn’t wake up. Then, slowly, things started to level out and specialist appointments went from every month to every three months. Then every six months and this year, for the first time, we are seeing most of them one time.
In addition to all of Conner’s specialist appointments, he was consistently doing weekly therapy at home. He has physical therapy, occupational therapy and feeding/speech therapy every week and has since he came home from the NICU. At 26 months, Conner did his first intensive therapy and we have not looked back since (don’t get me wrong, we still continue our weekly therapy). We have pursued many different types of intensive therapies. My personal opinion on therapy is to try it and see what happens. If it helps, keep doing it. If it doesn’t, try something else. There is no one size fits all in regards to therapy and special needs kids. Every child is so different, even with similar diagnoses. You truly never know what your child will respond to unless you try. Conner’s first intensive was an eye-opener for me. I quickly saw that Conner was capable of doing so much more than I realized. He was stronger than I could have imagine and he needed to be challenged more – so much more. I needed to see all of this in order to push Conner and pursue more therapeutic options for him outside of our city. For Conner, intensives therapies help him across the board. After an intensive I really see his confidence rise, his cognitive abilities excel and his desire to move and do more increase. All of these reasons are why I share Conner’s story and the therapies/interventions we do with the world via Our Life After NICU.
What is intensive therapy?
Intensive therapy is just how it sounds – intense. It is therapy every day for a set period of time (We have done intensives ranging from two days to four weeks). Generally your child will have two to four hours of therapy each day. Typically it is Monday – Friday, but that can vary based on where you are going for therapy and what is offered. Therapy can consist of physical therapy, Cuevas MEDEK Exercises, occupational therapy, speech therapy, feeding therapy, aquatic therapy, neurosuit, therasuit, universal exercise unit (Spider Cage), neuromuscular electrical stimulation (NMES), vibration plate and more. Intensive therapy can be a good fit for any child with a motor delay – regardless of diagnosis. Most importantly, the program should be customized to fit your child’s needs.
Why intensive therapy?
This is easy. “Current research supports that intermittent bursts of intensive therapy during development is beneficial to children for them to learn and re-learn movements. Research shows that time and duration of these bursts can vary and be effective from as little as 45 minutes per session up to three hours per session, and can range from two weeks to 16 weeks. Shorter sessions do not allow for body preparation prior to active functional strength and neuromuscular re-education type activities. While typical, traditional therapies ranging from 45-60 minutes, one to two days per week address these issues, an intensive program has shown to build on current skills and takes client s to another level of function toward independence.” United Cerebral Palsy Association of Greater Cleveland
I encourage you to consult with your child’s pediatrician and/or specialists to determine if your child is healthy enough for intensive therapy. You know your child best, but it is important for your child to be able to tolerate intensive therapy from a health standpoint.
Who is the best fit for an intensive therapy?
Any child with developmental delays - big or small. Typically children can start around 12 months of age, but speak with your clinic to see what their rules are. Conner was unable to start intensives until 26 months old, for various reasons. The biggest reason was that he was not medically stable for the first couple years of life. Second, we didn’t know intensive therapy existed. Based on my experience (seeing other children participate in intensives) - the earlier the child starts, the better. They may progress quicker because they don’t have habits formed/don’t have to re-learn how to do something, etc. Start as soon as you can - I wish we would have started much earlier.
How to find Intensive Therapy:
Do your research. There are many places that offer intensive therapy. Some are strictly one type of therapy and others offer multiple disciplines. The most helpful thing I have done is ask other parents. Connecting with families on social media has been crucial in finding new therapies, new treatments, new devices, etc. Being able to ask another parent that has been to a clinic or used a certain device is the best way to determine if it is worth perusing. However, if you find a therapy clinic you like and feel is a good fit for your child – it is worth asking if they can set up an intensive therapy for a week, two weeks, three weeks – really whatever fits into your schedule and budget.
The following are intensive therapies we seek out for Conner or have heard about from friends:
NAPA Center – NAPA (Neurological And Physical Abilities) Center was founded in 2008 by a fellow special needs mom, Lynette LaScala. Her son, Cody, experienced a near drowning accident on his first birthday. Lynette spent two decades traveling to find the best therapies for her son which eventually led her to create NAPA Center. There are currently three locations: Los Angeles, Sydney and Boston. They are opening a fourth location in Austin, TX in October 2020. NAPA also offers pop-up intensives in various cities each year. NAPA Center has three-week and a few one-week intensives all year long. They offer physical therapy, occupational therapy, speech and feeding therapy, Cuevas MEDEK Exercises, SpiderCage, NeuroSuit, VitalStim, swallowing therapy and more.
NAPA Pro Tip – Intensives fill up quickly! Sign up for their newsletter to get information on registration. NAPA opens up registration for the next year in the summer of the current year (usually July). So registration for 2021 will be Summer 2020. Be sure to complete the intake forms prior to the registration date opening up. This will expediate your process of registering and help your chances of getting into the intensive session(s) of your choice.
SMILE Therapy for Kids – S.M.I.L.E.
(Sensory.Motor.Integrated.Learning.Experience) Therapy is located in Concord, Ontario (just outside of Toronto). It was started by physical therapist, Jo-Anne Weltman. Her clinic offers physical therapy, Cuevas MEDEK Exercises, occupational therapy, speech and language therapy, universal exercise unit, therasuit, Neuromuscular Electrical Stimulation (NMES), vibration plate and so much more. SMILE is more customizable in the length of time you are there (1-week, 2-week, 3-week, etc.) and the hours of therapy per day. To inquire about intensive openings, email the clinic by clicking here.
Ester Fink – The Canadian MEDEK Centre – This is specifically MEDEK therapy and it was Conner first-ever intensive. Ester is located in Vaughan, Ontario (just outside of Toronto). Ester has more than 30 years of experience in the treatment of infants and young children with neurological and musculoskeletal disfunction. I can say first-hand that she is an incredibly skilled therapist. We loved her!
Jake Kreindler (@getyourbabymoving on instagram) - Jake is located in the New York City area. He treats clients on a weekly basis and hosts intensives at his office as well. Contact him on instagram or by email to check availability!
Tender Ones Therapy Services - This ciinic has two locations - Gainesville, GA and Dacula, GA. Tender Ones Therapy Services offers occupational therapy, physical therapy, speech therapy and aquatic therapy. Equipment they specialize in includes Universal Exercise Unit (Spider Cage), vibration plate (Galileo) and the Neofect smart glove. We have not been here yet, but know of a family that goes for weekly therapy and also intensives! We hope to book something with them soon!
Keep Moving Forward, Inc. is a clinic in Garden City, New York that offers weekly therapy and intensive therapy. Typically they offer 3-week intensives (5 days a week for 3 hours), but can do modified intensives based on your preference. They make sure to max the child’s potential no matter how long the intensive is. Some of the services they provide are: therasuit, e-stim, CME techniques, kinesiotape, redcord, vibration and so much more. They do accept insurance and it will just depend on your plan. Keep Moving Forward can assist you with figuring out what is covered, if any. If you are coming in from out of town, Keep Moving Forward has an affiliation with the Ronald McDonald house of Long Island for families to stay (suggested donation per night). To find out more about intensives or to register, call 516-208-2100 or you can email them.
Cuevas MEDEK Intensive/MEDEK – In October 2018, we hosted our first 5-day MEDEK intensive in Tulsa, OK. We found a therapist willing to travel to Tulsa to see Conner and other kiddos. We hosted it at our house and provided all of the equipment needed for the intensive. We continue to host intensives in Tulsa, OK as therapists are available! It has provided Conner the opportunity to participate in intensives that really work well for him right at home. It also brings a therapy to our city that other kids might not otherwise get exposure to for various reason (unable to travel, cost, etc.). These intensives are 100% out-of-pocket, but have been less expensive because travel costs are not involved and having our support system with us and sleeping in our own beds has proven to be priceless.
If you are interested in a MEDEK intensive in your city, please click here to learn more. If you want to find a MEDEK/CME therapist close to you, click here for our current list of trained therapists.
Create your own intensive:
If there is a type of therapy you’d like your child to do, but can’t find it in your city or in an intensive format, it doesn’t hurt to call a clinic that does offer the therapy. For example, I wanted Conner to try Aquatic Therapy. He loves the water and I have read about the benefits of aquatic therapy for kids with Cerebral Palsy. I found a place that offered pediatric aquatic therapy and called them. I was able to speak with a therapist and she helped build an intensive schedule for Conner for the week. You never know what is possible unless you ask!
Can’t travel for an intensive?:
Traveling can be incredibly challenging for many families for a wide range of reasons. It can be very difficult to travel when you have other kids, both parents work, your child is medically complex, financially not an option, etc. If this is the case, why not try to find a clinic locally that will build an intensive for you? We did this with the clinic Conner goes to in Tulsa (HTR Pediatrics). We increased the number of PT and OT sessions each week after Conner had alcohol nerve blocks in his adductors. We knew it was important to push hard after that to strengthen certain muscles. It worked out really well and it was so nice to be home while also getting some intensive therapy in!
Another option if you are looking for OT, sensory, vestibular, primitive reflex, etc. help is The Sensory Project! They have a podcast call The Sensory Project Show that covers a variety of topics - and you can download them for free! In addition to the podcast, they have have The Sensory Project Club! It is a place to offer exclusive resources, ideas, activities, and visuals for therapists, parents, and educators to have access to monthly. Lastly, they offer a variety of products, downloads and more to help your sensory kiddo!
How to prepare for an intensive?
Breathe. Prepare yourself for the full spectrum of emotions. You will feel anxious, nervous, worried, excited, hopeful, amazed, overwhelmed, happy, homesick, grateful…the list goes on. Unfortunately, your child will feel all of these as well. It may not be in that order, but I can promise you that you will feel all of those at any given point throughout your intensive. I can also promise you that all of those feelings are worth it. Worth seeing your child do new things, learn new things, say new things. It is worth it. And at the end of the intensive, when you go home, you will miss it!
Another thing to be prepared for is the possibility that your child may not like therapy. They may cry, say “no” to doing things, etc. We are lucky in that Conner typically enjoys therapy, however there are times where he doesn’t. In those times, I remind myself that what he is doing is HARD. I compare it to bootcamp for me and if I was doing bootcamp for three hours a day, I would cry too…probably much more than Conner! Go to intensives with a few distraction ideas in mind. Anything from videos, music, a favorite toy, etc. You know your child best and what motivate them. However, the therapists that do intensive therapy are SO good at figuring out your child fast and helping them through therapy. They recognize when they need breaks, need it quieter, etc.
Making the most of intensives:
Unless you’re lucky enough to live in a city that has NAPA Center or SMILE Therapy for Kids, you will most likely be traveling. Intensives are tough on everyone. You have experienced therapists at your finger tips – ask them questions. If you don’t understand what they are doing or why, ask! They have all been incredibly helpful to us.
One of my favorite things to do outside of therapy is explore the city and surrounding areas. If you have to be somewhere for an extended period of time, why not see all the city has to offer! Check our the aquarium, zoo, local favorites (therapists always have good ideas), etc. It doesn’t all have to cost money - one of my favorite things about going to NAPA in LA is the beach sunsets every night. We soak it all in and love ending the day that way.
Home program – What is next?
There is a caveat to intensive therapy – what happens next? Continuing therapy at home is key to success. Not necessarily in the intensive format, but daily therapy can really keep the progress going. You will receive a home program to continue at home (if you don’t – ASK!). You are also able to take video of exercises and practice them with the therapist. They will make sure you are comfortable with the exercises for when you go home. Doing the exercises on your own will be overwhelming at first. I promise, the exercises will get easier and better for the parent with more practice.
If your child receives weekly therapy at home, share the videos with their therapists. That way the responsibility isn’t solely on you as a parent for some things. They may not be able to do everything or may be doing some of the exercises already or in different ways, but I think sharing with one another is really helpful for everyone (parent, therapist and child).
Insurance
Does my insurance cover this? This is a popular question and for good reason. NAPA Center does take some insurance plans; however, it really depends on your carrier. For example, some kids get 30 PT visits a year, so does it make sense to use 15 of those visits in 3 weeks or does it make more sense to pay cash and spread out your insurance covered visits with your therapist at home? It is truly a decision based on the family, your insurance coverage and the needs of their child.
SMILE Therapy for Kids and most CME/MEDEK therapists are out-of-pocket. SMILE Therapy for Kids is in Canada. Therefore, for US citizens, the exchange rate works in our favor (for now).
For other therapy clinics, it is best to reach out to them and see what your options are for coverage.
Financial Assistance
You’re ready to give intensive therapy a go, but you aren’t excited about the price tag (is anyone ever)? Thankfully there are foundations that may be able to provide you with some assistance.
The LENN Foundation – The LENN Foundation is a 501c3 nonprofit helping families who have children with cerebral palsy. They provide financial relief towards children’s unmet medical needs not covered by insurance. Their goal is to give kids the quality of life they deserve. Click here for a list of items and programs The LENN Foundation funds.
NAPA Center Kids Foundation – NAPA Center Foundation funds one-time grants of up to $2,500 to an individual or families who have suffered catastrophic injury or illness, and need financial help to provide loved ones with a chance for a more meaningful life. A list of items and programs that grants may be requested for can be found here.
United Healthcare Children’s Foundation – Their mission is to improve children’s lives and help families gain access to the care they need through medical grants. They provide families affected by CP with the opportunity to receive access to health-related services that aren’t covered by their family’s commercial health insurance plan.
Local Foundations (i.e. Cerebral Palsy Foundation): Check around with local foundations. You never know what your options might be until you check around.
Survival tips:
Traveling with a kid is hard. Especially a special needs kid – I am certain they need more “stuff.” Often times, I travel solo, so I try my best to make where ever we go as much like home as possible. For shorter intensives (one week or less), I can manage in a hotel. For longer intensives, I prefer AirBNB options instead. Conner is on a blended diet via his g-tube. I blend and freeze his food ahead of time for trips. Because of this, we have to have a full refrigerator with freezer when we travel. With a full fridge generally comes a full kitchen. Being able to cook or have meals at “home” makes it feel more like normal life and is also much better financially. For longer trips, I always look for AirBNBs with a washer and dryer – for obvious reasons! NAPA Center has apartments, but they fill up quickly. If you are interested in those, you’ll want to reach out to NAPA to book.
Find a friend to travel with! We started doing this last year and it really was a game-changer. Having someone else with you that “gets it” really does make all the difference. You can even share an AirBNB and/or rental car to cut down on cost.
Travel tip: when booking hotels or AirBNBs – ask about extended stay discounts. Explain what you are going to be there for. In my experience, hosts have been very understanding and willing to cut us a break on our 3 week stays. Booking a rental car – In certain cities, it is MUCH cheaper to book your rental car off site (not at the airport). It will require an Uber ride or taxi, but it is well worth it when it means saving hundreds to thousands of dollars.
I am always open to talking with parents and sharing more about our experiences with different therapists or therapy clinics. Please feel free to reach out to me via email with questions.