Challenging Conversations with Family: A Child with Special Needs

During a recent chat with an aunt, she asked me if I ever regret adopting our five year old son.

The question caught me off guard.

She had not seen T in over a year and I was updating her on some recent challenges, including being confronted by an angry parent.

I told her without hesitation, “No. T is the best thing that’s happened to the hubby and I.”

And I meant it. Sure, he has challenging moments – almost on a daily basis – but there is so much love and joy we get back in return.

The question made me pause because it seemed so inappropriate.

But I didn’t make a fuss, because I know my aunt loves T. Her frankness is just part of age and the Asian bluntness.

Then I told my aunt T has recently developed a wonderful friendship with a 7-year-old boy and they’ve been playing together every day after daycare in the playground.

Surprised, she asked, “Is there something wrong with the boy too? Or is he normal?”

Again, if it wasn’t for me being used to Asian bluntness, I would’ve called out the inappropriate comment. I simply replied he seemed normal and added, “By the way, T is a normal child.”

Like, what does normal even mean?!

The conversation reminded me about the challenges that parents often have with helping their families understand the reality of raising a child with special needs.

First off, the hubby and I are very blessed to have families that love T. They may not fully understand the reality of raising a child with great potential but a prognosis of at-risk FASD but the love is undoubtable.

The hubby and I are very honest about T’s challenges. We don’t hide or sugarcoat things.

One area that was challenging in the beginning was making family members understand his challenging behaviour is a result of a brain-based disorder and not because he is a bad kid and that traditional types of discipline do not work.

I can’t count the number of times when our parents or uncles and aunts have tried to discipline or call T out for his behaviour.

One time another aunt tried to lecture T when he was having a meltdown and hit her. She later sent me an email saying that we needed to be on top of T’s behaviour or it’s going to get worse. She even bought me a book on parenting!

I responded in a lengthy email explaining T’s prognosis, explained the strategies we use – including riding out a meltdown instead of throwing fuel in the fire – and asked her to take our lead in the future.

My aunt is well intentioned and has raised a daughter with Down syndrome. So she understands special needs. What helped was giving her more information about T’s specific prognosis and once she understood more about it, she now takes our lead.

It’s important to set boundaries with family.

I am always grateful for the love that our family provides T, but the hubby and I are clear that we are T’s parents, so leave the parenting to us.

We tune out unsolicited parenting advice, parenting articles, and yes, parenting books too!

We focus our efforts instead on educating family – and friends, colleagues, school staff and others – about his needs and challenges.

We keep it real, because that’s important.

We also try to challenge stereotypes and labels about “special needs.”

T is a bright, funny and caring child. He has a tremendous spirit for adventure and he’s had many amazing life experiences already.

So many positives to celebrate. I want to remind people – not just family – to focus on these while keeping a proactive eye on the areas of need.

So when I think back to my recent conversation with my aunt, it reminds me that educating family is an important part of being the parent of a child with special needs.

These conversations may be tricky and sometimes cringe-worthy awkward, but they are worth the investment in time.

12 thoughts on “Challenging Conversations with Family: A Child with Special Needs

  1. I enjoyed and appreciate the refreshing, genuine honesty and golden parenting wisdom in your story. Elderlies, friends and extended family tend to intervene and say things that hurts or offends us whether they mean it or just being themselves. I agree, boundaries should be made because unfiltered , repetitive intrusion to how we raise our kids and how our lives should be lived can create friction and even break relationships. I understand and relate to the Asian Culture thing both of the old and the middle age. When I go to the Philippines, I hear comments and recommendations left and right without asking. It’s too much. I have 5 opinionated siblings who like to give parenting advice without asking how I feel about it. Funny part, I don’t say anything about how they are raising their kids. I just observe. It’s not my place to say anything because I don’t know their struggles and circumstances raising them or what their hopes and dreams are. I just wish they would do the same for me but I guess it’s harder for adults to change. They also intervene in my marriage which made me decide, “enough.” Boundaries are so vital for healthy family and relatives relationships. Thank you for the inspiration and motivation. You and your Hubby are awesome parents and T an awesome kid. 🙏

    Liked by 1 person

    1. Thank you for the kind and understanding words. I can understand how you can relate because it definitely is a part of the Asian culture, the unsolicited family and parenting advice. 😆 I just hope I learn to bite my tongue when T is a parent one day. 🤣🤣🤣 I say that jokingly and with hope. Take good care and hope you and your family enjoy your weekend!!!

      Liked by 1 person

  2. I find it fascinating your Aunt could ask if you have any regrets adopting T. My clients with children with developmental disabilities had parents leave the family, one or both parents. Others have been abused in many ways by their family yet I had two other families like you two. They are still married and have done anything they could to see their child grow. All but one of my clients now lives away from home with staff. One of my clients, that was adopted, you would never have known it by the love they give her. So I guess my point is, whether adopted or not, they can be born with developmental disabilities. So if you gave life to T naturally and he had these disabilities would she ask do you regret giving life to T? That had to hurt even though I’m sure you love her. I’m sorry for being so blunt but I have heard and seen so much over the years it still makes my heart ache.

    Liked by 1 person

    1. I definitely found the comment inappropriate. I’d be lying if I said I was not bothered by it but I brushed it off afterwards because it’s the way some of my family are – blunt and sometimes a lack of social sense. Hahaha.

      I can only imagine the things that you have seen in your work. I often think that those who provide social services are such miracle workers. You provide so much care for others and you also have to shoulder the emotional burden and impact of the work.

      We consider ourselves fortunate with T because he is doing fairly well despite the challenges. We know there’ll be many bumps along the way but just gotta hang in there.

      A former manager told me once to not adopt children with FASD as it destroys marriages per her other friends’ experiences. Those words always stuck with me. And I can understand why now. It really really tests you to the core as an individual and as a couple!

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  3. Thanks for this post Ab. I can totally relate. Friends and family though perhaps they don’t mean it can say things that really hurt us or question what we are doing wrong when in reality we are doing it right. When my son was younger, friends told as he has ADHD, or his speech delayed. His teacher on his first day of school kindergarten even told us as he handed him to us at the school exit, “You child has issues.” It affected us very much for awhile until we realize there was nothing wrong with him or us but it’s the people around us. My son has been the sweetest, kindest, smartest, most generous. He makes me see things I already forgotten or given up. Staying away from the pessimist and critics was one of the best decisions we made through the years. Best regards to your family.

    Liked by 1 person

    1. Thank you for sharing your insightful experience as always. I remember you previously sharing the kindergarten story. The judgment and criticism – whether unintentional or well-intentioned or purely ignorant – do have a way of burrowing into your mind, don’t they?

      One important lesson this year I learned is to just focus on the prize and your own personal journey as a family and as parents and to tune out the excessive noise. Best decision ever! 🙂

      I’m glad to hear about your son’s story. Everything I’ve read on your blog this year has shown me that you and your wife have done a great job on keeping it positive. So thanks for helping spread the inspiration around too.

      And hope you all enjoyed a wonderful Thanksgiving this year!

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  4. I can relate to this! Bob’s mom STILL tries to handle challenging behaviors the way she feels they should be handled and not the way we ask. It is very frustrating. It has gotten better over time. Telling family how we handle behaviors has helped and also, with age, Declan himself has worked though certain behaviors as well. But we sometimes still face, “No – this is the RIGHT way to handle this behavior” with Bob’s mom. It’s tough!

    Liked by 1 person

    1. It definitely is tough. And I know it all comes from a good place. But nonetheless so irritating to deal with. 🙂 I am lucky that the majority of family get it now and I just remind myself it all comes from a well intentioned place.

      Liked by 1 person

  5. Setting boundaries and expectations with family is always important, even if that means having awkward conversations. And even then, some people are just incapable of listening. Everyone has a different style and approach to parenting, but at the end of the day, as T’s parents, it’s your decision. And you’re doing all the right things by being patient, open and transparent. They should respect that. I certainly do 🙂

    Liked by 1 person

    1. Thank you! I’m pretty lucky that my family is supportive and loving of T. Setting boundaries was definitely more challenging in the beginning but it’s mostly ok now. The ongoing challenge is still making them understand these challenges will be lifelong – but hopefully also get much better as we’re already seeing.

      Hope you have a nice weekend. Am I ever glad it’s here again!

      Liked by 1 person

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