I’ve decided to do a two part series for our blog…mostly because this topic is something that is super important to Breakthrough and needed throughout the community. We need to have the discussion about the very special younger (or older) humans that grow up alongside the child with special needs. Having a child with special needs in the family not only effects the individual, but it obviously effects all members of the family. Routinely, support programs are offered to parents, but it is not typical to see support offered for the siblings. If you really think about it, siblings will likely spend the most time and be in their lives the longest out of anybody, including therapists, parents, and extended family members.
It wasn’t until I was working in home care, being exposed to many different types of family dynamics and situations, that I saw the effects of having a child with special needs had on their siblings. There was a very special mom in a family that I worked with who introduced a formal version of sibling workshops to me – called SibShops. I ended up attending a two day conference with her to learn how to host these workshops to the best benefit of these sibs.
In the conference, I was exposed to so many ideas that I, to be totally honest, hadn’t even considered up until that point – or at least in that level of depth. I was able to gain a new perspective on the unique concerns and unique opportunities they face along their lifespan. Some of their challenges are pretty obvious even if you’ve only ever had your special needs child. These challenges help mold them into the incredibly caring and patient children they are. Even though they may seem obvious to some, that doesn’t mean they are normal challenges that another child their age faces and they could even be things that you or I will never have to face.
We’ve learned a tremendous amount from our sibs so I want to share what we’ve learned from them behind the scenes which could help parents see some things more clearly.
The Challenges They Face…
If you’re a parent reading this, you may be surprised to see that so many of the challenges you feel, are actually directly in line with the challenges your children are undergoing too.
1. Friends not “getting it”.
Boy do we hear this nearly every session. If you can think back to when you were younger, around your child’s age…especially middle school where the start of drama truly began, I bet you can remember it being a little bit of a challenge. It’s that weird time where you’re not really sure who you are yet, but you are certain of all of your insecurities and choose to care a whole lot about things that won’t matter ten years from now. Did I refresh your memory yet?
Finding a group of friends is hard enough already at that age. Then let’s tack on having a sibling with special needs, it can make it really challenging to find true friends. Not only do they have the natural insecurities about themselves, but they have insecurities about their family too. They try bringing friends over who don’t understand why their sibling yells, hits, bites, doesn’t talk, can’t sit up by themselves, the list goes on and on. We’ve heard countless stories just about that.
2. Managing their feelings such as:
A. Frustration: I can’t tell you how many times we’ve heard how frustrating it is for them when they are held to a different set of standards than their sibling. Yes, they realize their sibling can’t help it sometimes but they often get frustrated that if their sibling does something such as get angry, hit, yell, etc., that they don’t receive the same punishment. They often will express that their parents will yell at them for something but if their sibling does it, they don’t receive the same punishment.
B. The Need To Be Perfect: If I had a single dollar for every sibling of a special needs child that I’ve met, that is competitive to be the best or is a classic example of a “perfectionist”, then I would be writing this article from my yacht somewhere in much warmer weather. All joking aside, these kids are extremely special, but they place so much added stress on themselves because of everything they see you as a parent going through. I’m not sure if it is some form of compensation mechanism to “make up” for their siblings deficits in behavior or abilities, or maybe even to be perfect so they don’t add to the stressors on their parents, but it is extremely prevalent amongst these sibs.
C. Fear: Fear typically comes up in every single workshop. It’s the topic that no matter what discussion we facilitate, their fears become exposed. Sometimes it’s fear about not fitting in with their friends. Sometimes it’s fear of being alone. And even sometimes it’s fear of what will happen as their sibling gets older. They’ll often express these fears which are way beyond their years and way beyond what any “typical” sibling will ever have to think about. I often think about it in comparison to my own childhood at their age and how different their reality is no matter how much you are able to keep “normalcy” a part of their every day life.
There are so many other emotions, feelings, and thoughts they share with us on a regular basis. One thing COVID has allowed us the opportunity to do is meet weekly with our sibs on our Virtual Sibshops and remain in contact, feeling supported, and discussing the world outside of them with what they’re going through. It has allowed us to provide a safe space for listening, discussion, and also some fun mixed in!
We are now adding even more to our Sibshops programs involving education, leadership opportunities, and even MORE ways we think we can help support them on their unique journeys of a being a sibling of a child with special needs.
If you think this could benefit your family member or know someone that is a good fit for this program – make sure to reach out via email at info@breakthroughptli.com or give us a call at 631-348-0959 for a free trial!
She discovered her passion for the neurologic pediatric and adult population during her clinical affiliation at a special services school in Cape May, New Jersey. She is an active member of the APTA and continues to take post-graduate course work related to treatment methods for neurological diagnoses.
- Run to Break Through – The Perfect Day - November 17, 2021
- Episode 11: Autism mom and children’s author, Amy McCoy, shares her journey as mom and Advocate for Inclusivity - April 14, 2021
- Episode 10: Living with Cerebral Palsy Part II: Sharing Experiences, Outlook, and Challenges with Irene Dashiell, LCSW - March 16, 2021
