September 14, 2008
Can You Meet ALL Their Special Needs?
Hello, 5 Minutes for Special Needs readers.
For my first ever column post here, I’m going to step outside the box and write about my two kids who don’t have special needs. Because I love those kids…every bit as much and with just as much passion and adoration as I do my daughter with cancer. Yet, I know there are days they feel last in line and second best because the bulk of my attention is focused on whatever critical issue Peyton has.
Am I alone here? Need I go join the team at 5 Minutes for Things That Apply Only To Me?
Peyton was diagnosed with Leukemia at 2 years old. Nathaniel was 8 and Rachael was 5 when our normal life was shaken like a snow globe. I won’t lie or make excuses, they fell to the background in the fallout of Peyton’s diagnosis. I was frantically trying to understand my new role as a nurse to my sick child, grasping wildly for some emotional control over the situation and they suffered for it.
Perhaps they didn’t suffer in any large CRUSH-YOU-LIKE-A-BOULDER ways, but in many small ways that sting like a pinch. The kind that, when repeated over and over again, leave a huge and lingering bruise.
“Can you help me with this?”
“No, I can’t right now, go see if your dad can.”
“Are you coming on my field trip?
“No, I have to take Peyton to the clinic.”
“Can I sleep in your bed tonight?
“No, Peyton had a rough day at the hospital and she’s sleeping in there.”
The No’s far outnumbered the Yes’s in those days. Time and time again, without even realizing it, I reinforced the idea that they weren’t as important, as significant.
The guilt. The hurt. The pain of mistakes made that can’t be undone.
Whenever I talk to parents of a newly diagnosed child, I always make sure to ask if they have other children, I make sure to express my concern for those children and their coping skills. I never want to add more to the overwhelmed feeling that the parents are experiencing, but the subtle reminder of their “other” children sometimes brings new support options.
On my personal site, I’ve gone out of my way to emphasize that although this is something that Peyton is going through, it ripples through our family. Your entire family is diagnosed.
What can you do to emphasize that you’re still there for your other children?
There were times when Peyton would cry for me as I walked out the door, she would be screaming, “Don’t go! Don’t go!” Yet, I would hold the hand of whatever child I was devoting time to, and we would shut the door behind us. My heart would be pounding and everything inside me would be aching to turn around and go comfort her. It was one way that I took back my relationship with my older children, I let them see that although she needed, or wanted me, they were a priority in my life as well.
I made sure to take them out, whether just to a movie or a dinner, but one on one time, dedicated solely to them. We never stayed at home during those times because it was too often that I had to answer Peyton’s call, or she wanted to be involved in whatever we were doing. It HAD to be a singularly THEM moment. I would pull them out of school an hour early so that we could go to the park, I let them stay up an hour later so we could play a game.
I think it helped. If not them, it sure helped me.
What have you done to remind your special needs child’s siblings that they are special too?
You can also find me at Hope4Peyton, come by, it's nice…we have cookies!
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13 Comments on Can You Meet ALL Their Special Needs? »
#1 - Awesome Mom @ 4:53 pm
My special needs child is my eldest, so the shocking earth shattering parts ( most of his heart surgeries and his stroke) all happened while he was an only child. I have been aware of the effect that all of Evan's therapies had on our family and I have kept them to a minimum. We have been lucky that Evan's therapists have been more than happy to include his younger brother in the sessions.
#2 - Katie @ 7:13 pm
I'm a sibling to a special needs child, and I really appreciate this post.
I'm studying to be a speech therapist now and I want to try and include whatever siblings I can get in my therapy sessions!
#3 - Finding Normal @ 7:59 pm
I just blogged about what Noah has lost in being that special needs sibling. I know in my heart that he's gaining a lot, and I know it will shape his character and make him an even more amazing person, but I wrote about the loss today. I try to make him realize how special he is each day, but I do also worry that he feels second best since so much of our time and energy revolves around his sister.
#4 - Melody @ 8:55 pm
My older son is now grown and out of the house, but I still sometimes feel that he feels "second" to his younger, special needs brothers. I make it a point to call and chat, and visit with him w/o his brothers around. But in reality, he is an adult and I know he understands. Now as a teen…we had our struggles with this issue.
The 3 boys who are at home each have special needs. I spend time with each of them alone…away from home as you said…but not often enough.
Thanks for reminding me to love on them individually just a bit more.
#5 - One day, a thousand feelings | Hope4Peyton @ 9:00 pm
[...] can read me here [...]
#6 - Julie @ 11:33 pm
What an awesome mommy you are! I don't have any other kids…but we have a Golden Retriever (ok, don't laugh!). She is THE BEST dog I could ever have hoped for for my son, but she is often kind of pushed aside so we can pay attention to Daniel. I need to give Dixie more attention or at least somehow find the time to walk her more often. I can't imagine how hard it must be for parents with other kids. Hugs and best wishes to all of you.
#7 - Danette @ 12:30 am
This is such a great post and excellent reminder. That one about sleeping in mom and dad's bed hit home, we get that a lot and I hate to say "there's not room" when the reason there's not room is b/c there's already a boy in there with us…
All 3 of my sons have special needs (autism) and when my little one was a baby (before he regressed) I felt guilty about how much of his time was spent tagging along for his brothers' therapy appts, or when I had to put him in his crib and leave him there crying to go deal with one of his brothers' meltdowns. And now it tends to go in the other direction, my little one's autism is more pronounced than his brothers, and his needs can be quite time-consuming.
Just this weekend I made a special "date" with my twins to take them out - just them - so I could spend some time with them without being constantly interrupted or having to chase my youngest around. It was great being able to focus just on them! We have also made it a point to take each of our twins (and now our baby) out individually sometimes too, to get some one-on-one time with them.
#8 - Lori @ 12:59 am
What a great post! I have cried many tears for my oldest daughter who has been pushed to the background at times. My heart hurts for her, especially when I ly in my bed at night and think of the neglect she may have endured that day. I want her to feel important and loved, just as much as Myah. The truth is, my oldest is a special angel in her own right! Thank you for expressing these same thoughts, and thank you for the wonderful ideas and reminders!
#9 - Trish @ 8:46 am
Although I only have one child, I have definitely dealt with the issue of focusing too much attention on my son's needs and neglecting time as a family or as a couple. Sometimes I feel guilty that we haven't had another child, especially when my son is lonely and sad that I can't play with him 24 hours a day.
Thank you for sharing this, Anissa, and welcome to the team!
#10 - Brandi @ 10:03 am
We have 5 children. Our special needs child is the youngest one. This is such a timely post for me. Last week I was in the hospital with Miles all week. We got to be home over the weekend, but we'll be in the hospital again all this week because he's having surgery.
It's so hard to juggle life while at the hospital. This morning I was making the kids breakfast and my girls ages 6 and 5 were gathering up pictures of themselves for me to take to the hospital so I could "remember" them. Oh my gosh that makes me want to cry.
It won't be easy today…but this post has inspired me to get a babysitter for Miles today so I can go eat lunch with my other kids at school before I leave. I knoe that will bless them. I haven't been able to do that this year.
THANK YOU!
#11 - Tamie @ 10:35 am
This is such a good reminder, thank you. Our oldest (almost 5) has autism, and we have two younger girls. One is just a baby, and so the middle one really gets the bad deal, I think. We're either tending to the baby, or to her older brother.
I am trying hard to keep her from feeing TOO left out. When she turned 3, we started her in gymnastics lessons just like her brother. I have a babysitter come just to spend time with her. Usually the babysitter will take her on special outings that I can't because I have to be home while my son is in therapy.
Although I wish *I* were doing some of these things with her, I do know she has jealousy over how many therapists come to our house and work with Jacob. So I think she really enjoys having a special person to come and do things just with her.
We are also starting to look at her educational needs. She just had some testing done and scored very high…a reminder to us that we need to make sure we pay attention to that part of her life as well, and not just Jacob's.
Thanks for this post!
#12 - Meg Beverly @ 11:22 am
This is something I struggle with daily! We do lots of outings and activities as a family, but they are, of course, bounded by what my son can handle. My daughter gets the short end of the stick all too often.
We have long had Friday night be "stay up late night", usually she and her daddy do something special together (or even just veg out in front of the TV). And my mom watches my son on occasional weekend afternoons, so my daughter and I can go roller skating or to a movie.
These special moments are precious to us, but I wish I could find more balance in my everyday life, as well. More patience and attention for her and activities that meet both their needs.
Thank you for reminding me to keep working on this one!
#13 - Stephanie @ 3:38 pm
This has definitely been an issue im our house as well. Since our special needs child is a twin, he has a built-in helper at his side. Although twin 1 is usually very good about doing things for twin 2 if he asks, there have been times when it's more of a demand from twin 2, like it's just expected that twin 1 should do what he says. We have to make a point of reminding twin 2 that his brother is always willing to help if he truly NEEDS it, but he's not a servant. Also, making time for twin 1 to have his own activities that twin 2 cannot encroach on is very important. Thanks for this wonderful, thought-provoking post.