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Siblings have special needs too

You may wonder why so much was made of AJ’s weekend in the Blue Mountains.  This was part of our greater plan to take care of her needs as a sibling to someone with a disability.  I think many parents struggle with balancing family life when one child has special needs.  It is difficult to ensure siblings don’t miss out.

I have always been acutely aware of how much time and energy goes into our son BJ.  The assistance he needs with daily living skills, simply requires more of our time.

AJ is a great sibling and quietly accepts most things.  Rarely does she make a fuss or complain and if she does, we know she has really reached her patience limit.

Due to the seven year age gap I was able to give her my full attention when she was younger as BJ was at school. It became more difficult to find that time when she started school.   For the first few years I would let her have a day off once a term to do something special with me. A quick explanation to her teachers and they were fine with her having the time off.  I think it often gave the teacher a greater insight into her life which was beneficial.

Just taking a day off school was exciting by itself even without anything else being planned.  How we spent that day varied greatly.  I would give her a few options and it was sometimes as simple as staying in pyjamas all day, playing board games and doing art and craft.  Other days we would go to a place that was not accessible with a wheelchair or somewhere that BJ wouldn’t like.

Now that she is in the later stages of primary school I don’t feel I can take her out of school each term but she still has the odd day.

Going to the Blue Mountains for a night with her best friend was a huge success.  She is extremely lucky to have a friend who also has a brother with Cerebral Palsy so there is a great understanding between them.

The weekend was structured so the two days were filled with things she would like, or, could not normally do if we were taking into consideration travelling with a wheelchair.

We started the weekend doing a bush walk which is not wheelchair accessible.  I have always wanted to take AJ on the Wentworth Falls walk.  The girls enjoyed it and I learnt that using ramps with the wheelchair has meant that my calf muscles don’t get a work out.  I must do something about that.

The Fairmont Resort is accessible but it was nice for AJ to have someone her own age to participate with  in all the resort activities.  BJ could not manage the playroom for example and those things are always more fun with company.

The weekend consisted of many indulgences, afternoon tea at The Gingerbread House Café, a very elegant high tea at Lilianfels Resort, manicures at Spa Sublime and a lovely hand massage at iKou in Leura Mall.

You don’t have to spend a lot of money to make someone feel special.  Just one of these things on their own would have achieved the same result.  Showing that you know what they love to do is the most important thing.

AJ has very fond memories of days spent in pyjamas playing games and this costs nothing.

It is about spending time with your other child/children, giving them your undivided attention, letting them know that they are special and their needs are important too.

I’d love to hear what others do to take care of their special person.

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6 thoughts on “Siblings have special needs too”

  1. My Son has a hard time at times, he has told me that he thinks I love my daughter more who has Special needs… I do try to plan a “date night” with him when my daughter has respite. I think I need to do more.

    • It sounds like it is very difficult for both your son and yourself. We have been fortunate that my son leaves school about an hour before my daughter and he also goes to bed before my daughter which allows a bit of special time at both ends of the day for her. Maybe try explaining the situation to a close friend or relative and see if they can give you a short amount of time out even if it is just to take your son to a cafe or ice cream shop. Just something he particularly likes that gives you time to chat. I know it is often easier said than done. Doing your best is all you can do and remind him you do give him time when you possibly can. Good luck. Julie

  2. My situation is like yours but a tad bit more complicated. Have have 3 children with special needs. My oldest is adhd bipolar and very high anxiety so there r things we can’t do with him but can the other kids. Then my 4yr old is adhd only and he is a very demanding child when it comes to spending time with me. And my daughter is almost one and was born with laryngomalasia hearing problems and recently started having seizures. We set back on day a week that someone will watch the other 2 and we do something special with each kid one on one. But I also have an hour set aside every night before bed that is mommy cuddle time. We all curl up on couch and they want to play candy crush and tell me what moves to make and the baby trys to steal my tablet. I know it may sound funny but they love it!

    • Hi Anonymous, Your situation definitely sounds more complicated and tough to juggle. It is great you are mindful of giving each child some time out and your evening routine sounds lovely. I don’t really think it matters too much what you do together, it is just about being together. Thanks for sharing. Julie PS> I’ve never ventured to Candy Crush because from what I’ve read it sounds very addictive.

  3. As a special needs sibling I just wanted to say – you rock. My mom and I regularly had just us time and I think it made a huge difference not only in growing up with my brother, but in how I feel about him as an adult. I have other friends that are special need sibs and they bear so much resentment and anger that comes from being the invisible sibling, the glass child. As a parent I know how hard it can be to find the time, but it is so beneficial both short term and long term.

    • Thanks Heather for your kind words and for sharing your experiences. It helps a lot to hear from others that are ahead of where we are and it is good to know that you feel time with your Mom by yourself made a big difference. It is always hard to find the time in any family but as you say I think it is hugely beneficial. If you are on facebook we’d love for you to ‘like’ our page as it sounds as though your input would be very insightful. Thanks again for your comments. Julie


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