What Therapy Looks Like for Our Child with Down syndrome

One of the hardest things for me about having a child with special needs is probably the incessant buzzing of my brain, the questioning, the figuring out and wondering. All of the buzzing essentially has to do with the one big question:

“Am I doing enough?”

Am I doing enough to support our child’s development? Is he eating the right things? Should we have him on this supplement? Are we doing the right mix of therapies? Are we doing therapies frequently enough? Are we doing too much? etc etc. The list goes on. And, honestly, I feel as though no matter how much we do, I’ll probably always feel the mother guilt that I’m not doing enough.

52-48-3I’m not in the habit of talking much about what therapies we do with Nicholas unless I’m specifically asked, as I am far from an expert on research and advances to assist children with Down syndrome. However, I am the leading expert on a spunky three year old kid known as Nicholas, just as you are the leading expert on your child. So I’m happy to give you a general overview on what therapy looks like for our family. I think it’s important to remember that what works for one child or family doesn’t necessarily work for another. It’s not about a right way and a wrong way – everybody uses a slightly different approach.

Please don’t take this post as advice or use it as a benchmark as to what you should (or shouldn’t) be doing with your own child, but let’s just have a conversation about it all and throw ideas around. Feel free to add in your own list into the comments field at the bottom of this post or, if you’re a blogger, I’d LOVE you to write a post and share a link to your blog below using the Inlinkz tool. We’re all in this together and your ideas could just make a world of difference to another family.

So, back to what Therapy looks like in our family…

We’ve always had a pretty holistic view when it comes to Nicholas’ growth and development, so ‘therapy’ for us encompasses a wide variety of things. Here’s a general overview, in no particular order:

The ‘traditional’ therapies ~ Physio / OT / Speech

After registering with our local Family & Early Childhood team at Disability Services Queensland when Nicholas was about five months old, we have had an awesome team working with us consisting of a physiotherapist, occupational therapist and speech therapist. There have been a couple of changes in therapists since he began, but generally the team has been fairly consistent and, while all reports are that the FECS services can be pretty sketchy depending on location, we really have scored with a great group of people. We set family goals each semester and, depending on what we are working towards, the level of therapy changes each term. We generally have an appointment with one, or a combination of two, therapists either weekly or fortnightly, depending on the availability and need.

Nicholas is 3.5 years old and our primary goal is speech related, so we currently have mostly speech therapy appointments, followed by OT and then physiotherapy. As Nicholas is now walking fairly confidently, at physio we are working on skills such as successfully walking up and down stairs and walking over obstacles. We also see a private physio occasionally, to supplement the number of FECS physio appointments offered.

Osteopathy

OsteoI call it a ‘happy accident’ that Nicholas has been seeing the delightful Sharnie McCooke, from the Brisbane Children’s Clinic, since birth. My sister is an Osteopath and her very good friend Sharnie asked if she could treat Nicholas as part of a university assignment, and the love grew from there.

Originally, we saw Sharnie primarily with regard to Nicholas’ plagiocephaly (flat head syndrome), but there are a multitude of benefits to Osteopathy, as Sharnie has outlined in a guest post here last October. These days, we check in with Sharnie for appointments approximately once every two months, or as needed if something (like the recent middle ear infection) arises.

Applied Kinesiology Chiropractic Care & Retained Neonatal Reflexes

After going through a program to assist with Retained Neonatal Reflexes with our local chiropractor and kinesiologist, which involved approximately 15 appointments, Nicholas now sees his chiro about once every three months for a checkup. Essentially, chiropractic care involves “focusing on reflex patterns which help strengthen the nervous system. By improving muscle control and function, this work has been clinically seen to alter learning, behaviour, muscle tone and control.” The appointments are relatively short and Nicholas is generally pretty happy to have the gentle manipulations from his lovely chiro.

Biomedical GP & Supplements

We do have a wonderful regular GP who helps us when the kids come down with various bugs (although, thankfully, we don’t spend too much time there!) but we also choose to take Nicholas to a biomedical GP who has a holistic approach. He runs various pathology tests in order to check things, such as thyroid function, and offers suggestions as to what supplements may assist with biological deficiencies, such as iron levels, as well as provides the research behind why it’s important these various physiological systems to be working at optimum levels. Nicholas is on a few different supplements. Thankfully, he has been pretty healthy since birth and we haven’t had any significant health issues to contend with.

Other Medical Checkups

To be honest, I’ve been pretty slack with doing hearing and ophthalmology checks of late, so that’s on my list to achieve by the end of the year. We don’t have any obvious concerns in these areas, but I know that it’s important to have the experts do the once over every now and again. We also check in occasionally with a Paediatrician, but again, Nicholas has been healthy and robust so far, so it’s mainly just to ensure we haven’t missed anything. In regard to heart health, Nicholas did have a small PDA at birth but this had resolved itself prior to our check at six months and thankfully no further appointments have been required.

Diet 

While FAR from perfect, we try to maintain a diet for Nicholas based on whole foods (organic where possible), and one that is free from gluten, dairy, soy and refined sugar. Actually, we’re fairly strict on the gluten and dairy bit, pretty good on the sugar, and not as great on the soy… but we’re going with the “evolution not revolution” philosophy and our household diet is far better these days than it has ever been. We do our best at keeping processed foods to a minimum.

We choose to avoid these things for Nicholas proactively, not because he has had any particular or obvious reactions. He is so used to it now that he often rejects foods with wheat in them if offered, simply I think because they aren’t familiar to him.

Some days we manage to get everyone in our house eating healthy, organic whole foods and give ourselves high fives, but other days it’s very much a work in progress!

IAHP

I think this topic requires a whole blog post on its own (which I have been meaning to write for a few years now!), but I did attend the ‘What To Do’ course with the amazing IAHP organisation in 2013, when Nicholas was 16 months old. IAHP has been challenging perceptions throughout their history and I know it can be a divisive topic, but I gained some very valuable knowledge in that very intense week. Within two months of attending the first lecture series, Sam was diagnosed with Leukaemia, so our focus needed to change somewhat, but I’m thankful for all I learnt and, as well as an incredible knowledge base for how I approach Nicholas’ growth and development, it also connected me with an array of incredible parents who I continue to be inspired by and learn from each and every day. I did go back to Melbourne and attend Lecture Series 2 in 2014.

While everyone may take home different things from the course, the information I found the most useful for our family was with regard to the importance of crawling and creeping, the reading program, and research behind good nutrition and minimising toxins, particularly in the home environment. While we have never undergone an intensive neurodevelopmental program following the course, these are the things we have chosen to focus on. With regard to the reading program, we use resources and techniques from Doman’s How to Teach Your Baby to Read, DSAQ’s Reading Our Way, and BrillKidz Little Reader (although, none of them as consistently as I would like).

Mummalove 52-23-1We have many friends who do fairly intensive neurodevelopmental programs with their children and I admire their dedication and effort. We are not that family and frankly could never keep up the pace, but I do think what they are doing with their kids is awesome and incredibly valuable.

Other Activities

We have taken a break from swimming over winter, but plan to return to it before too long. Nicholas has just started a toddler gymnastics group, which focuses on important skills such as hanging, climbing and jumping, but mainly it’s just really good fun and he loves it.

Mummalove Therapy-2Since Nicholas was about eight months old, we have been attending a weekly music therapy group run by DSAQ. He absolutely loves the singing and musical activities, but it has also been such a great base for our support network in the Down syndrome community and I am thankful for the wonderful families we have met through it. Nicholas is in his element when we are at music (and sometime just super cheeky with his bestie, Rosie), so it’s definitely one of the highlights of our week.

Childcare & Formal Education

Nicholas attends a local daycare centre one day per week, which he loves. He is often heard saying “daycare, hooray!” as we drive towards the centre, and I love hearing the chatter of little voices saying “Hi Nicholas!” excitedly as we arrive. He is in the Junior Kindy group with typical peers and, from all reports, happily participates in all activities. He does not have an inclusion support person at daycare – just the teacher and an teacher’s aide that they would normally have in a room with that number of children.

As well as daycare, in June this year, Nicholas started spending one day per week at the Early Childhood Development Program pre-prep at a special school a few suburbs away from us. We had been attending a playgroup there one morning per week together since the beginning of the year, but now he attends the full day by himself in a room with eight other children with various diagnoses. I think it felt a little confronting at first that I was sending my child to a ‘special school’, when I really don’t consider him disabled. However, we have had a really positive experience with wonderful teachers and I feel as though it’s helping him prepare for a more formal education setting. Next year, he will attend a local mainstream kindergarten five days per fortnight.

Family (Incidental) Therapy

Actually, we just play a lot. Nicholas loves jumping, running and crawling on the trampoline (bottom jumps are his favourite at the moment), chasing brothers around the yard, kicking soccer balls and climbing on playgrounds. The boys do a lot of wrestling with Daddy.

Mummalove Therapy-1Nicholas is a great helper and is good at taking his plate to the kitchen, or putting the cutlery away from the dishwasher. He often asks for the ‘yadder’ so he can climb up and put peanut butter on his toast or help me make scrambled eggs. He is, by far, my most helpful child 😉

I think there is a lot to be said for the ‘therapy’ that comes about from everyday life and the opportunities that arise to learn and grow through play, communication and relationships. We would be lost without the ‘village’ that loves our children and helps them develop as well-rounded individuals through friendship and good role models. This kid is not short on love and, when it comes down to it, being loved and happy are probably my two most important priorities for Nicholas.

In summary

Phew! When I write it all down, we sound pretty busy! And, while some weeks are busier than others, I really do try to limit our official appointments with professionals – because, frankly, I don’t think anyone benefits if we’re rushing around, constantly sitting in traffic and  feeling overwhelmed by a schedule that’s too full. Especially with regard to physio, OT and speech therapy, my theory has always been that those appointments are more about what ideas we come away with for activities Nicholas and I can do at home than what we achieve in that short timeframe once a fortnight.

With regard to therapies, I think the important thing is to do what feels right for your child and your family. It’s great to hear what other people are doing, to gather information and knowledge from various sources, but sometimes it’s important to remember just to be with our children, to play without thinking about what benefit this particular activity will have. If you are feeling overwhelmed with it all, take a break from the ‘official’ stuff for a while and step away from the multiple forums and social media. At the end of the day, just being a parent is a big job and your health and wellbeing is important too.

We all want what’s best for our kids, but ‘what’s best’ looks different for every child and there are many different ways to achieve it.

What ‘therapies’ do you think make the most difference for your child? Do you have a relaxed approach to ‘therapy’, or are you routined? I’d love to hear what you’re doing in your family. 

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