Tuesday, May 28, 2013

Perspectives of a Big Brother to a Special Needs Child

JC is a lucky child because he has the most wonderful big brother imaginable. BB is 7 and is the most kind-hearted, fun-loving, sweet child I have ever known (yep, mommy bias). But I realize that God had a plan when he sent JC to our family. He knew that even though it would be difficult at times, and even though my patience wears thin, BB is always there to make JC laugh. He understands that JC has a difficult time with daily life sometimes and he tries so hard to be a guide through the rough spots. He mimics my actions and words "First put your shoes on Bubba, then you can go outside".  He is selfless in his giving and sharing because he knows that JC doesn't yet understand fully the art of social give and take. And he thinks of his own ideas for therapy for JC.  He does all of this without my guidance most of the time.  It seems to be intuitive. He just "gets it" and JC is lucky to have such a wonderful big brother.

But, I often wonder how difficult this must be on BB. I know its hard on me and on our family, but from the perspective of a child, what impact is it having?

"Mom, I'm glad I go to school all day so I don't have to be here to listen to Bubba scream all day"

"I never had therapy, because I wasn't bad, right?"

"Was I a lot smarter than Bubba when I was his age?"

These are all things that BB has said over the past few months. Each time, I was heartbroken by the reality of what BB must be feeling. It paints a picture of what his perspective must be. JC is an unruly child who misbehaves and isn't smart because he can't speak well, he doesn't know colors or numbers and won't sit still to read a book.  Of course I explain that JC just learns differently or just has problems with speech, but that doesn't mean he isn't smart. I explain that he doesn't go to therapy because he is "bad" but because he needs extra help with how he understands the world. And the screaming, well... That's something that we all just have to be patient with while helping him find the words to use instead.

Beyond that perspective, the past 2 years have been difficult on our family as a whole. My cancer diagnosis threw everything into survival mode... We just had to make it from one day to the next. Everything was so unstable and there was no such thing as routine.  Is no surprise that JC's symptoms peaked during that time. So once, I was healthy again, the focus turned to JC.  We needed to help him meet developmental goals and settle his anxiety level a bit. I always thought BB handled everything so well that we didn't need to worry about him. He is a "go with the flow" kind of kid, but what happens when that flow turns into a tidal pool and he is caught in the middle.  The anxiety level of our household is through the roof because of the stress of JC's daily issues. It affects, all of us, but I hate to say that I didn't realize the effects it was having on BB until recently.

BB was required to be more mature than most to cope with what we went through. Now he he seems to feel expected to be the responsible child, even beyond his years. He seems to inherently understand that JC has certain needs and tries not to take it personally when JC screams at him, or when I am overwhelmed by the situation. But the look on his face when he is trying to help or play and JC reacts in such a volatile way, breaks my heart. I can explain it away as much as possible, but it still doesn't change the fact that it hurts him or that it increases his anxiety level just like it does for me. Click HERE to see what I mean.

BB doesn't have friends over very often because of JC's outbursts. He most recent experience with a friend visiting involved JC yelling at this poor child because he sat in the seat that JC had apparently claimed as his own for all time. And how do you explain to another 7 year old who isn't used to having a special needs brother?  What has become second nature to BB seems uncomfortable and intrusive for other children. So he is relegated to play dates of outside or away from home. It isn't fair, and it isn't easy... but he takes it like a trooper and he never complains. He enjoys the good times when JC is being silly or wrestling with him, and he tries to lift our moods on the bad days. Which is why he is the perfect big brother for JC. He will grow up with a wealth of understanding and compassion and will be better for the experience. But for now, we all learn from day to day hoping that the day will come when we can live a life without turmoil.


  1. Wow, way to neglect BB and have let JC devolve into an ill-behaved monster. Because its totally responsible to just decide a 7 yr old can be mature beyond his years.

    JC may well be autistic - but he also sounds like a loud, obnoxious, undisciplined brat that takes up all your and daddy's attention and destroys stuff for sport.

    Hey, I wonder why BB feels neglected (cuz he is), stressed (parents that ignore him, the brattiest kid brother on earth) and parents that can't even stop lil bro from being a terror on the odd occasion he invites a friend over.

    I'm sure you don't intend to raise bb to loathe his parents and resent his brother, but you're doing a great job if it!!

    1. Wow is right. I wish you knew my family better because only then could you even come close to knowing enough to speak this way. Your opinion is just that... Your opinion. I have taken BB to a psychologist who had confirmed that he is a wonderfully well rounded child who is succeeding in every way inspite of having a mother with cancer and a brother with autism. I think that is quite an accomplishment. And to refer to my 2 year old as a "brat" is beyond ignorant. If you even knew half of what he deals with on a daily basis you would see how far he has come. I hope you live your life beyond reproach because to pass judgement like this, you must be perfect.

  2. OMG, Kate! Way to judge what you don't know. You obviously do not have anyone close to you that has autism (or at least not in one of its more severe forms) because JC is NOT a brat! He has sensory issues and yes, at times life does revolve around him. He isn't destroying things "for sport" he is doing it because he feels overwhelmed by his sensory needs -- oh and he's TWO!!! It is incredibly hard to figure out what someone wants when they cannot talk to you.

    Hugs to you mom. Your life is difficult enough without the uninformed judging you. Here's hoping you beat your cancer. I sometimes feel like I have it hard with two special needs kiddos but I don't have as much guilt as you do with trying to balance life for BB. Try to make special accommodations sometimes (maybe have BB's friend over when someone is taking JC to therapy) but know that you are doing everything in your power to make life as fair as possible. No, life isn't fair and it is NEVER equal.

    Extra hugs for dealing with idiots like Kate.

    1. Thanks Julie! Now that we are beginning to understand JC more and more each day, we are figuring out ways to accommodate his needs as well as BBs. I have since spoken to the child's mother (who was at our house) and explained the situation so that we could all be more prepared for future playdates. It is certainly a battle to attend to the needs of siblings equally even if special needs aren't involved - but especially when they are. This post was meant to highlight how wonderful BB is and how even despite my shortcomings as a mom and my daily battle to juggle both of their needs - he has still thrived. That says a lot about him! <3
      (Oh, and I am coming up on my 1 year "cancerversary"... hoping scans are still clear!)

  3. Both of your sons are awesome individuals, probably because they have awesome parents. I don't know you guys, personally, but from your posts it sounds like you're dealing with everything that comes your way, splendidly. Isn't it great how blessed we are. Your son, DD will grow up to be more compassionate and who know how many lives he will touch. I think its even better that he can have friends who can come over and then they will be educated about being around special needs kids. Keep up the good work.

    1. Thanks so much Doris!!! That is certainly our hope!