Tuesday, August 21, 2018

Advice from Adult Special Needs Siblings

This Little Miggy || Special Needs Siblings
I've been thinking a lot lately about the unique position of being a special needs sibling--that is having a brother or sister with special needs or a disability. Specifically, I've been thinking about my kids--my oldest and youngest--and wondering how we  are completely screwing them up can support them more. Children with special needs tend to get a lot of attention--both positive and negative. Adjusting to and understanding the dynamics of disability can be difficult for new special needs parents, which means it could be near impossible to ask children to understand, yet we often expect them to just "get it" and go with the flow. Or maybe we assume that since extra attention, therapy, medical needs, doctor appointments, become "normal" to us that it will feel "normal" to them. Or sometimes we simply don't know what to do, we don't know how to balance the very real needs of our extra needy kiddos while ensuring that our other children get the attention, love and validation they need as well. 

So I reached out on Instagram and asked to hear from adult special needs siblings, or even older teenagers, about their experience being a special needs sibling. What was it like for THEM? Specifically I asked, 1) What did your parents do well? 2) What do you wish they would have done differently, and 3) Now that you're an adult has your perspective changed over the years? 

I received some wonderful responses (as always) and have compiled them below. Most of the answers have been edited (some significantly) to be more succinct and brief. Most people share what their sibling's diagnosis was/is, but some don't. Also, some people were OK using their real names and sharing their link to social media, but many don't. If you are a special needs parent keep in mind that all of these perspectives are valid and honest but don't necessarily pertain to your specific situation. I wanted to create a post that could be helpful for many of us to see ways we can support our typical children better. I did NOT want to create a post that would riddle us all with guilt and shame for the things we're NOT doing. 

The vast majority of us are doing the best that we can and our best is pretty damn good most days. So please take this post as the helpful, extra insight it is meant to be. 


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Amber
Hi my name is Amber, my sister Megan is 4 years younger then me. She doesn’t have a diagnosis except for hypoplastic left heart. Her charts are a mile high from significant amounts of tests that came without answers. She was supposed to pass away within days but is now 29 years old, and has the mentality of a 3 year old when it comes to reading and writing, but a 7 years old as far as she can make her own pb&j sandwich. 
My mother always taught me to treat her like an equal. Yes, she of course has special needs but she is still my sister and a stinker at that. Seriously, she has been stuck in the terrible twos for far too long now--haha! But when we were in public I always stood up for her and couldn’t understand why people didn’t see her as any other human on the street just like I did. 


I always felt like I was forgotten about, naturally as a child that makes you feel terrible. She always had PT and OT, she had to be treated with much more attention to meet her needs but as a small child I didn’t understand that. I think 1:1 time even just once a week would have made a huge difference. 


Steph
My younger brother was/is mentally disturbed from a young age. Autism, OCD, anorexia and schizophrenia. I grew up very, very resentful of him. Angry, frustrated, disparaging and disgusted. Unfortunately I didn't have the tools to cope with or understand him, because no one told me he was different. My mom was a psychologist and was fully aware of his issues and his background, but for some reason she never spoke to me about why he behaved the way he did. It was treated as though it wouldn't affect me in any way. Wasn't even a consideration. Even when he was left in my care, which was often.

When I was 17 I was furious with him for something and my dad took me aside out of earshot. I screamed and cried about 13 years of frustration and asked WHY does he do these things, what the hell is wrong with him, why is he such an asshole, why doesn't anyone do anything??? My dad very carefully answered that well... he's either going through a difficult stage and he'll grow out of it. Or he is mentally ill. That's literally all he said. And it made all the difference. Someone finally acknowledging that this situation was NOT NORMAL made me feel so much better. O
nce I had even a sliver of information, the clouds parted. 

Kids have to know why their sibling is sick. Why they need more attention or services or patience. Pretending they aren't different was a terrible fit for my childhood. I think parents handle this far better these days, and I often wonder what my relationship with my brother would look like today if it wasn't poisoned by so many years of anger and confusion. 
This Little Miggy || Special Needs Siblings

Chelsea
My younger brother Elliot was born premature with gastroschisis. He was in the hospital for quite a while with heavy medication, and at 6 months old he received a lifesaving liver transplant. He was later diagnosed with severe hearing loss, ADHD, Tourette's, a severe milk and peanut allergy, and developmental disabilities. I was diagnosed with type 1 diabetes and later celiac disease.

My brother's medical needs were much more severe than mine growing up, so I (now) understand that his needs were more important than mine. But as an adult now, I do wonder how my life would be different and how my management of type 1 diabetes would be different had my brother not had his medical conditions, if my parents would have been able to focus more on my needs.

Elliot died 6 years ago at 16 years old because of his immunosuppressant-ness (he got a virus that his body just couldn't fight), so I can't bring myself to ask my parents how they prioritized his health/needs growing up over mine. But it is something that bothers me. I'm in a good position now in that my type 1 is well managed but it took me soooo long to get there.
On top of this, I have an older sister who *just* had sports-induced asthma, so I can't imagine what her experience was like growing up, watching my brother and I get all the (medical) attention from our parents. 

Elliot often got special privileges or treatment, gifts, etc. When my sister and I got upset about it, my mom's reasoning would be, "Well we don't know how long he's going to live [so therefore this xyz is ok/ justified/he's deserving of it.]" While that certainly was true—he was living on borrowed time with his liver transplant—as children, it was difficult for my sister and I to understand and be OK with that reasoning. In our eyes it was just that he was being spoiled and we weren't. In those moments it made my sister and I feel like we could only be special if we had as many disabilities and medical conditions as our brother. As an adult, I'm so glad my brother got to do a bunch of fun stuff in the years he was alive, but I still don't think my mom's reasoning was the greatest. It's such a tricky thing to navigate, though.


Kelley
I was born in 1959 and my sister was born less than 2 years later, with 2 more siblings after that. She had cerebral palsy and the mental ability of on 10 month old her entire life. So my memories of her were always happy ones. Imagine a 10 month old. Always happy, in fact , I never saw her cry. Such a joy to be around. 



One huge thing I took away from this way of life, I know how important it is to greet people who act different or look different. I hated it when people wouldn’t greet my sister or just stare at her. Even though she couldn’t respond with words she would always smile and laugh!  


Audrey
Most of all, I wish there would have been more conversation about disability when we were growing
up. [My sister], Rachel went to a lot of therapy when we were little, and I was always brought along. I remember sometimes feeling jealous of all the "fun" things she got to do while I sat and colored in an activity book. The "computer games" and "obstacle courses" she was doing were hard work for her, but I didn't understand that at the time. 

At the therapy places, I'd see lots of other disabled kids. I'm sure I was curious, but I was a pretty quiet kid, and I don't remember ever asking any questions. I think talking about it would have helped me to understand earlier. It might have caught my incorrect assumptions about Rachel's therapy and helped stave off jealousy. She still made plenty of time for me. I think the important thing was just to communicate about it-- explaining why Rachel needed the extra attention, and listening to my frustrations if I had any. As I got older, I sometimes wished I had another, more typical sibling who I could talk to. When I expressed these feelings to my mom, she never made me feel guilty about them, and that's when we started having conversations about things that were harder for Rachel and why. 

Growing up, Rachel and I spent tons of time together, and so I often felt I knew her better than anybody else. And maybe I did-- but this confidence let me presume things about her experiences and her abilities that I had no real way to know without talking with her. I made the mistake of thinking that I had walked in her shoes, when in fact I had not. And this isn't something that I mean to blame entirely on our mom; I just wonder if, had we been in an environment that encouraged open discussion instead of making assumptions, I would have been quicker to talk with Rachel about her experiences. But again, we never talked about disability. 

The thing that bothered me more than anything else growing up was that some of Rachel's bad behavior was given a pass because Mom was trying to "pick her battles" and not nag on her for every little thing. Mom saw Rachel constantly getting corrected: her speech got corrected, her social skills got corrected, her schoolwork got corrected. All day long at school, and in all her therapy appointments, the focus was on ways Rachel could improve. But to me this sometimes felt like a double standard. As an adult, I can empathize a lot more with Mom's perspective and Rachel's experiences, and honestly, I'm not sure what a better way to handle this would have been. 

Mom emphasized that our experiences are different, not necessarily easier or harder. I never really felt like my achievements or problems were being compared to Rachel's, like I shouldn't complain about my own struggles in light of hers, or like I needed to "make up" for her limitations in some way. Our whole lives, Mom regularly modeled that though Rachel and I often had different challenges, she would be supportive when we needed help, and proud of our accomplishments.

Mom had a tough job. Of course there was no way that she could have done everything perfectly. But both my sister and I always knew that she loves us both tremendously. We both have good relationships with her now that we're adults.
This Little Miggy || Special Needs Siblings
Sibyl
I am now 29 and my sister is 32. Growing up, my parents didn’t stop us from doing anything we wanted to do because of my sister. We still were able to do “regular” family things. Honestly, growing up with a special needs sibling, we don’t really know any different. It is just what we are used to!

I guess I would just say to make sure not to interfere with things the siblings want to do - if the siblings want to go do something with friends, for example, allow them to still be their own person without having the other sibling tag along all the time.


Cara
So growing up I am the oldest of four and my brother has special needs--mostly learning delays, ADD, fine motor difficulties. As a child I don’t really remember anything significant but there were four of us so there was always a lot going on.
That being said I think things could have been different if my parents had talked to us more about my brother and the struggles that he faces. 

As adults my brother has a lot of difficulty navigating systems (ie medical appointments/maintaining employment/“adulting” for a lack of a better word). That being said my parents are both healthy capable people but they have both pretty much stopped parenting. The problem is he still needs so much parenting. My brother is struggling with some health issues and needs help scheduling and attending appointments as well as understanding what the doctors are saying during appointments. Forgive my long response but basically as a sibling I’m frustrated that my parents have stopped parenting and my sisters and I have had to step into that role to make sure that his needs are met.

I am also disappointed in my parents and the school system for not preparing him for life and working to get him disability or extended supportive services and thinking that he was going to graduate high school and just go on his way and live his life independently!


Emilene
So my brother is 26 and has Down syndrome. I’m 27 so we are very close in age. My mom never treated him like he was “better” than us or gave him special treatment besides what he needed for his disability (I.e. therapies, special sport teams, assistance in stores) I don’t have any grudges against her and I don’t feel shafted or anything by how we were raised. I wouldn’t change it.

I think now that he is older and out of school she babies him more. We’ve had lots of talks about this and she says it’s a guilt thing. I’m out of the house and have a 6 year old, our younger sister has moved out as well, so it’s just him and she feels like she needs to give him all this crazy attention and he’s a little spoiled now because of it. I just had him for 2 weeks while she was on vacation and we definitely are going to modify his home routine to make him more independent and self reliant at home since he did so good here with it.
This Little Miggy || Special Needs Siblings
Christina
My twin sister and I grew up with our little brother Michael who has Down syndrome. He is currently 37yrs old. What did my parents do well? When we were younger kids, my parents never made us feel like we had to "take care" of my brother, or give us any responsibility beyond our years. We were allowed to be kids, the three of us together. That was the dynamic. You're all kids and you are only expected to be kids. I remember them going to school board meetings to advocate for his inclusion, and parent teacher conferences, and I remember when they took him out of one school because it wasn't the right fit and moved him to another. But it wasn't until I got older that I realized how much work they put into advocating for him. They aren't the "shout from the rooftops" type of parents, and I absolutely think there is a place for that kind of special needs parent. They made big changes in their own quiet ways and our childhood was very harmonious.


Anna
I am one of 4. I have 3 younger brothers, the eldest of which has a physical disability. I would describe it as a moderate disability though it may get worse at it gets older. He is now 36. I love my brother and my parents dearly and they are all good good people BUT it drives me mad that even in his 30s they don't expect him to stand on his own two feet. I feel like my brother can be a little selfish and I'm sure that is partly because he's never had to think about anyone else and he's used to having things done for him. For example he has stayed with me for several days and he expects to be waited on, he never offers to help out or pay for anything (but he'll buy expensive clothes for himself.) He seems totally oblivious to the fact that he is being self centred. My parents repeatedly bail him out financially and he never pays them back or expresses much gratitude. He has a good job but he is irresponsible with his money and I feel that if they had expected more from him, he would have had to be more sensible and independent. Don't get me wrong, my parents would help any one of us if we needed it but we don't expect it or take it for granted in the same way. The dynamic is just different with this brother. My parents feel that he is vulnerable and has been dealt a bad hand in life I think--which I understand--but I don't think they've done him any favours by over compensating.

I don't judge or blame my parents at all for the way they are towards him and there is no bitterness or resentment, I just wonder if actually my brother would be a slightly better rounded and more independent person if they'd higher expectations of him and been a bit harder with him.


Sarah
What did my parents do well? They encouraged both of us in our strengths. She had lots of therapies and things that she needed, but they spent equal or more time still coming to all of my things at school and beyond--every recital and art show. I was never told anything for her was more important than what I was doing.

What to do better? Spend more time around other people with special needs and get involved so that I didn't feel so isolated. It would have been great to meet other families and their siblings so that we all had a support system.



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A huge thank you to everyone who participated and shared their thoughts and experiences. I want you to know that I've taken your words and experiences to heart as I recently had a heart-to-heart with my oldest and learned that there are many ways I could be doing a better job to support her. So thank you. I'd love to hear from any other special needs siblings who'd like to chime in and share your insights below! XO

8 comments:

  1. This is a wealth of knowledge and wisdom!! I see lots of recurring themes, especially around communication, gratitude and clear expectations.

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    1. I agree. I think a lot of these people pointed to the need for more communication. That one thing--acknowledgement and conversation--can go a long way.

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  2. The photos of your two daughters are just beyond precious.

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    1. Thank you. They are pretty sweet little monsters.

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  3. i wish there was a formula to keep everybody happy and fulfilled. As a mom of a little girl with very low vision, I tried to be balanced... the future will tell ��

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    1. Anonymous6:46 AM

      That's a really good point, anab. I do appreciate the thoughts and lessons from these siblings, but parents already have it so difficult, special needs or not. Plenty of non-special needs adults will have things (good and bad) to say about how Mom and Dad treated them vs. siblings. I'm sure all of these parents were doing their best, navigating a lot of different things, some joyful, some really tough.

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    2. Anab and Anon--I agree. Parenting is difficult no matter what and being a kid can be difficult no matter what and you will have differing levels of sensitivity, effort, etc. on both sides. As I said above, " I wanted to create a post that could be helpful for many of us to see ways we can support our typical children better. I did NOT want to create a post that would riddle us all with guilt and shame for the things we're NOT doing. The vast majority of us are doing the best that we can and our best is pretty damn good most days. So please take this post as the helpful, extra insight it is meant to be"

      My personal belief is that there is always room for improvement WHILE being gentle with ourselves at the same time. XO

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  4. Such useful and real insights about the importance of avoiding assumptions about what children understand and need, but also about extending grace for the incredibly complex and no-easy-answers parenting we've all expereinced.

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