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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.

21 lessons learned since cerebral palsy diagnosis
One day old BJ

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

21 lessons since cerebral palsy diagnosis
BJ with his iPad set up

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

21 lessons I've learnt
Home-made travel bed

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.

BJbday

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

21 lessons I've learnt
BJ learning to swipe was an unexpected gain

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

21 lessons since cerebral palsy diagnosis
BJ playing soccer

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

ramp6

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

21 lessons since cerebral palsy diagnosis
Bush walking with the TrailRider

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

21 lessons since cerebral palsy diagnosis.
AJ & BJ

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

21 lessons since cerebral palsy diagnosis
BJ happy at 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

21 lessons since cerebral palsy diagnosis
AJ taking time out

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

Face

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

21 lessons since cerebral palsy diagnosis
BJ cable hang-gliding at Tahune Airwalk Tasmania

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.

You might also like to follow us on Facebook for our daily tips.

 




11 thoughts on “21 LESSONS SINCE CEREBRAL PALSY DIAGNOSIS”

  1. Hi I have a 30 year old sister who was born with cp and as I read your blogs I reflect on the joys and hardships we have endured ! My sister was mentally quite well but unfortunately got in with the wrong crowd and as a result of taking ice and speed she is not the person she was ! It is not an easy feat caring for someone day in day out but at the end of the day I can’t help but feel this has happened because we are in a position to help out.

    Reply
    • Hi Tanya,

      Thanks so much for sharing. I have seen a friend go through ice addiction and it is hard to watch all that is lost and how it takes hold. It must be extremely difficult for you to see your sister go through that.

      Take care and thanks for sharing.

      Julie

      Reply
  2. Darling Julie, I have read every line above and i keep saying the same ….you are truly amazing ….you as a mother is the best of the best and i will never stop admiring you and your efforts

    Reply
  3. Lovely blog. Happy 21st BJ! I also have a 21 year old son with CP. I think your first point to trust your instincts is particularly critical for young parents. In the middle of so much emotion, confusion, information and inexperience it is so hard to trust yourself. Listen well and think about the whole family, but do what you think is right. Because you always are ?

    Reply
  4. Happy Birthday, BJ! And happy birthday Julie, and your husband. What a milestone. I love your blogs always, and this one in particular had so many great points. The ones I most relate to are ‘BJ often surprises me with what he’ll do for others’ – yes! This is one reason why it’s so important for Leo to have opportunities to learn and do things with others, because when I am around he hangs on my apron strings, whereas when my husband and I aren’t there, it’s amazing what he can do! (I’ve seen the photos!) I also love ‘trust your instincts as a parent.’ Also, ‘ waiting on the big goals can sometimes be a long wait.’ I was waiting for Leo to talk for about five years, and it was very good to let this go. Of course we work on communication all the time, but our happiness as a family, and my pride as a parent should not depend on something that may or may not happen. BTW, that’s so great that BJ can swipe! Please wish BJ happy birthday from me.

    Reply
    • Hi Laura,

      So lovely to hear from you. This will sound strange but I was wondering if all was well with your family as I miss our regular ‘likers’ on FB when names don’t pop up for a while.

      I am so glad this blog post resonated with you. Hang in there and keep working towards those goals slowly. I had given up on walking for BJ in one way but we kept working on making him strong. His independent steps at 18 haven’t translated into him walking by himself safely but it gave BJ a thrill and us. It built his confidence and all the work on keeping him strong helps him stay healthy and independent with transfers etc. Sometimes the goal just needs to shift to the left a little and change ever so slightly.

      Thanks for sharing and take care.

      Julie

      Reply
  5. Hello Julie, I did so enjoy reading this and was nodding along silently.

    We have our 19 year old with ASD, and I’m afraid that his siblings are finding him quite hard to live with and don’t seem to be very nurturing at all. I hope this will change as they get older. In retrospect, I wish we had had more time with the other kids over the years… I have minimised the impact on them in my own mind.

    So important to trust your instincts and then to have excellent self care – always so much easier said than done.

    Happy birthday BJ and here’s to the next 21 years.

    Reply
    • Hi Seana,

      I’m not sure how much dynamics are changed by the number of siblings. AJ and BJ only have each other so I guess that in itself gives them a bond. They are the dynamic duo. Whatever you do at the time as a parent I believe you are doing your best. I look back and wish I’d done this or that but at the time I was doing my best and that’s what counts. No time for regrets really.

      Thanks for sharing and take care.

      Julie

      Reply
  6. https://www.facebook.com/groups/KidsNGeneral/ I have created this group if anyone wishes to join. It is a closed group to do with any and everything about KIDS. I started the group to share my story of how the school treated us. My daughter is 9 and born with Down syndrome……

    Also I am running a campaign for a young lady living in VA Beach in a wheelchair. Please check out the campaign. I only need 11 more shirts to be sold and you have six colors to choose from…. I created the design to bring AWARENESS to those that use wheelchairs.
    http://www.booster.com/supportfeliciasabitities?ref=copy-link_social_desktop-campaign-page-share-top-v2&utm_campaign=desktop-campaign-page-share-top-v2&utm_content=supportfeliciasabitities&utm_medium=social&utm_source=copy-link&type=1&side=front

    Reply

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