“You don’t have to come. I understand.” Those words hung in the air and my stomach sunk. I was going to be missing something of hers again because her sister had an appointment. I couldn’t get out of it. It was an all-day assessment at a rehabilitation hospital that we had waited many months to get the call for. And of course, it was on exactly the same day that I was supposed to be taking my middle daughter to something she had been looking forward to. I couldn’t be in two places simultaneously. I was going to choose her younger sister’s appointment. We both knew it. There was nothing fair about it. It just was.
I hate that I’ve had to disappoint my other kids. I hate that they have had a childhood that is marked by so many specialists and meetings and stress. I hate that I can’t fix this for them. But on the other hand, I love that my kids show such grace towards others because they have had to learn to be patient. I love that they understand that just because a person may be different or have additional challenges doesn’t mean they are less worthwhile. I love that I see them reaching out to help strangers and neighbours and friends because of the compassion they have learned from having a sibling with special needs.
One of the most challenging things about being the parent of children with special needs is the guilt I have about my other kids. I often feel like there just isn’t enough “me” to go around. I feel like my kids whose needs aren’t as high get less than their share. It can feel impossible to meet everyone’s needs.
Last year, I shared a letter I wrote to my “other children”. In it, I shared the feelings I have about my kids having to and getting to be siblings to children with special needs. Because on one hand, it makes their lives so much harder and yet, on the other hand, it equips them with character traits and skills that they wouldn’t otherwise have.
5 things all kids with siblings who have challenges need from their parents:
Acknowledge that their sibling’s special needs affect them too. Talk openly and honestly about the ways that they are impacted. There will be times that you will miss their games or be late to their recitals or not be able to tuck them in because of the needs of their sibling. This is disappointing for them. Of course. Acknowledge that.
Some parents think that they are protecting their kids by not sharing with them the truth of a situation, whether that be a sibling’s diagnosis or a sibling’s prognosis or other pertinent information. The parent’s intentions to shield a child are admirable, but the outcome can be that it increases worry and fear.
It is so important to give accurate (but age appropriate) information. Your child likely has worries that they do not want to share with you as they do not want to add to your burden. They may imagine things that are far worse than the reality. It is common for children to do this when they feel that something is being kept from them. They fill in the blanks with the worst case scenario. By providing factual information and letting them know that you are available to answer any questions they may have at that time or in the future, you can help alleviate their worst fears.
Check-in with them about their feelings
Just as parents of special needs children often need time to grieve, siblings need to grieve in their own ways too. Even if they are the younger sibling and have never experienced life any other way, seeing their friends’ lives may cause comparison and feelings of grief as they age. They may realize how much they are missing out on.
Teach them how to talk about their feelings. Do regular check-ins to see how they are coping. This doesn’t have to be complicated. Choose something simple like talking at tuck-in time or when you are in the car together or while they help you do dishes.
One of the traps that parents can fall into is minimizing the stress or difficulties their child faces because in comparison with the challenges of their special needs sibling, they can seem small. But issues with friends, decisions to make, bullying, schoolwork, and other hardships in childhood are very real and deserve to be acknowledged.
Encouragement and Appreciation
It’s hard to find that balance. On the one hand, you don’t want your child to resent their sibling with special needs, so you don’t want to rely on their help too much or have them grow up far too soon. On the other hand, you don’t want to rob them of the opportunity to grow in character and skill from all they have to learn from their sibling and their sibling’s challenges. It’s a fine line to balance, but an important one. One of the ways you can best balance it is to be sure to apply praise and appreciation liberally.
Be sure to also encourage them in their own talents and uniqueness. Show appreciation for who they are and what they contribute to your family. Write short thank you notes on post-its and stick them on their door or pillow. I still stand by my view that the 2 words that can have the biggest effect on your family are “I appreciate”.
The thing you already don’t have enough of is time. I know it. Five of my kids have special needs. Time is already stretched thin. You have to be creative to carve out time with your other child (or children). Make the most of the time you have with them. Here are a few suggestions:
- let them snuggle with you in your bed early in the morning
- if just the two of you are in the car, swing by a drive-thru and pick up ice cream or a special treat and giggle about having ice cream for breakfast (or lunch or supper or late at night)
- let that child stay up late one night a week or a month for some one-on-one time
- have a special ritual like a secret handshake or line dance or signal
- wake them up in the middle of the night to watch the stars or see the Northern Lights – I once woke my daughter up to see the beautiful Northern Lights and when we got outside, they were gone! We laughed and laughed and it’s such a special memory!
- take the long way home just to finish singing the song
- go for a walk with them
- let them see that they are a priority by putting your phone down and making eye contact to ask about their day
- say “yes” more often
- eat supper as a family (if it’s at all possible)
- have a dance party in the kitchen while you clean up
- read to them (even to older kids) – It once took a year for us to get through a book because it didn’t happen often, but it was still worth the effort.
Of course their childhood will be altered and affected and may not look like what you imagined, but let them be kids. Give them breaks from the stress or chaos of home. If there is a grandparent or special friend that they can spend time with, facilitate them having regular breaks and being able to look forward to that time away without guilt.
While you may not be able to give them a childhood full of big events, trips, planned moments, complicated crafts, and cool birthday parties, you can give them small moments of special memories. Grab onto the opportunities that present themselves. Be silly. Be spontaneous. Dance in the rain. Let them stay up late once or twice a year for a special pyjama movie night. Sing in the car. Make up the songs. Invent a secret handshake.
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