21 LESSONS SINCE CEREBRAL PALSY DIAGNOSIS

In a matter of weeks, BJ will be 21. Twenty-one!  I can’t believe it. I’m so proud of the person he is. He brings us all so much joy.

As always, birthdays make me reflect on where we are and how far we’ve come. I thought in honour of his 21st I’d share 21 lessons I’ve learnt since BJ’s cerebral palsy diagnosis. I’d love to hear what others have learnt along the way, so please share in comments below.

1. Trust your instincts as a parent or carer.

When BJ was first diagnosed I was a doe-eyed young mother who hung on every word of therapists, doctors and specialists. Although confident with babies and young children I suddenly felt out of my comfort zone when knowing what was best for my baby living with cerebral palsy. After a while I regained my confidence and became vocal. Probably too vocal but I’m happy to throw ideas around, problem solve and speak up. You can learn a lot from books but as a parent or carer you know your loved one. Trust yourself.

2. Remain open to ideas

As much as I said trust your instincts, I think it is important to remain open to ideas. Therapists sometimes suggest things that I don’t think will work but I’ve learnt to remain open to ideas. BJ often surprises me with what he’ll do for others.

3. If a therapist isn’t a good fit, move on

Just like any relationship, a therapist may not be a good fit with either you or your loved one.  Give it a few weeks and then ‘break-up’ if it’s not working.

BJ once had a speech pathologist that was such a bad fit for us. I tried so hard to make it work because she came to the house and was local but ultimately it wasn’t working. It wasn’t us, it was her! When BJ was little he mouthed a lot and this therapist had a problem with saliva. Me thinks she may have chosen the wrong career. She made me feel bad about BJ so she needed to go. She may have been very good at her job in general but a child with additional needs wasn’t a good fit for her.

4. Think outside the box

We’ve had to do lots of this in different areas of BJ’s life. I wrote about how we funded BJ’s iPad set up by thinking out of the box here. As BJ has got older we’ve had to use this to come up with gift ideas each birthday and Christmas (you can see some of our ideas here) and ways to keep him motivated with therapy.

5. Home-made solutions can be the best

Specialised disability equipment is expensive and there isn’t always a perfect solution out there. We’ve made lots of home-made equipment for BJ and as time has gone on we’ve got a better feel for what we are doing. Sometimes it is done by bouncing ideas around with a therapist and other times we just go with our gut. Judging by the wonderful range of solutions our readers shared in this post we are not alone in working out our own solutions to problems.

6. Got a good therapist? Show your appreciation.

When you get that fabulous therapist, make sure they know they are appreciated. A little “just because” gift, or note, will go a long way to keeping them motivated. Often people only hear about the problems or when there is a complaint, make sure you remember to give them a little praise too.

7. Don’t always look to the big gains – celebrate the small ones

I used to look at walking as the end goal for BJ but waiting on the big goals can sometimes be a long wait. Make sure you notice all the little gains along the way. All those small improvements are working towards something bigger one day.

8. Go on the wait-list

Specialists have long waiting lists and it can be frustrating to have to wait when you have a pressing issue. I always ask to put our name down for cancellations. I don’t think we’ve ever not got a quicker appointment using this method.

9. Work out what is worth the effort for your child

Therapy is hard. We always had so much more success with therapy if we tailored it towards BJ’s interests at the time. Walking in his walking frame just for the sake of it is hard work. Put a ball in front of BJ to kick while he is in his walking frame makes it all worthwhile in his eyes. Most of us like some reward for our efforts. Here’s my 7 tips for therapy success.

10. Plan for the future but don’t live in the future

I have been known to pop my head in the sand on more than one occasion. Fortunately, at those times, I’ve had a great therapist who has grabbed me by the hair and pulled me out (ever so nicely of course). They’ve helped our family plan for the next stage. Particularly with equipment needs, housing and schooling it is important to look forward – just not too far. Our home modification is the perfect example and you can read about that here.

11. The family that plays together stays together

Whether you are a couple where one partner has additional needs, or a family with a child with a disability, the rule is the same. Spend time doing fun things together. Make sure you take time out from therapy or caring to do things that you will all enjoy. Travel has been really beneficial for our family for this reason.

12. Sibling bonds

We are so glad that AJ and BJ have such a strong sibling bond. Obviously this is in part due to their personalities. I think this has been helped because we’ve always ensured that they’ve done fun things together but also each had time out with one parent too. Life’s busy but we’ve also tried to do special things for AJ to show her that we appreciate her for the compromises she makes and the care she shows BJ. You can read more about how we spend time with her and ideas for sibling care in my blog Siblings Have Special Needs Too.

13. Respite

Respite was always such a dirty word to me. I always felt that there had to be something good in it for BJ, not just a break for our family. When we finally gave respite a go it was such a lesson for us all. We could see BJ enjoyed the independence. It was giving him the chance to meet new friends and learn to accept help from others. In turn we learnt that it was okay to have a break. It has also given us time with AJ which is also important. You can read more about my trepidation here.

14. There’s no harm in asking

Sometimes you just have to ask. Whether it is asking for help, asking if someone can provide access or if something is possible. You never know if you don’t ask. Sometimes it starts a conversation or opens other’s eyes to the need for change.

15. People staring isn’t always for the reason you imagine

Most of us will have experienced a stare or comment which has made us feel uncomfortable. Over the years I’ve discovered that it isn’t always for a bad reason. When I’ve smiled or looked approachable I’ve been surprised by the number of people that have come up and said that their relative is a wheelchair user or been recently diagnosed with a disability. Others work in the industry and are interested to make a connection. Obviously there are those that are simply ignorant and there is little that can be done about them but my point is don’t always assume.

16. Prioritise

I used to be like a mouse on a wheel – running non-stop and feeling like I was getting nowhere. I’ve now learnt to prioritise with BJ. There will always be a million goals but we can’t do it all at once. It’s too much for BJ and us. It’s a marathon, not a sprint and it’s okay to stop and take a breather along the way.

17. I can do more than I’d ever imagined

Personally I’ve been challenged in so many ways over the last 21 years. Learning the whole world of cerebral palsy, a new lingo, to trust myself, to trust others and to let BJ have independence. I’ve gone without more sleep than I could have imagined, worried more than I ever thought a person was capable of and experienced more joy from small moments than I would have before. I’m a stronger, more capable person thanks to BJ – still tired mind you!

18. Take care of yourself

The safety announcement on flights tells you as a parent to put on your own oxygen mask before putting one on your child. As a parent or carer it isn’t that easy. When you are looking after a child with additional needs it is hard to take time out for yourself. I find that when I do manage to take time out for me that it reinvigorates me and I return home ready to take on all the challenges. Don’t feel guilty about looking after yourself too.

19. It’s okay to have down times

I’d say I’m generally a positive person but a couple of times a year I have a short period where I feel a bit down. In the beginning I’d fight it and try to force myself out of it. Now I realise it is okay to have a few days where I feel lost or overwhelmed by it all. It IS hard and it IS a long-haul. The forms, appointments and goals are demanding. Knowing that it is short-lived helps and a good cry never goes astray.

20.There’s so many good people trying to make a difference

If there is one thing that I have learnt since having this website is that there are so many people out there trying to make a difference for people living with a disability. People with a passion, drive and determination to make the world more accessible and enjoyable for all. It is amazing what one person’s vision can bring about. We’ve seen example after example of this. You can read Jordan’s story here.

21.Keep your eyes open to opportunity

We hope that Have Wheelchair Will Travel opens up the eyes of our readers to the possibilities out there. We are always looking for opportunities for BJ to participate in life.

I’m sure there are many more things I could add but I limited myself to 21. I’d love you to share your wisdom and lessons too.

If you’ve liked this post you may also like 21 Excellent adventures where I share some of the great inclusive activities we have done as a family.

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