A Special Needs Family

When a child has special needs, the bumpy ride of growing up can pose an additional challenge, not only for a child but also for the whole family: Siblings are jealous for the extra attention the child in need is getting but also worried about their brother or sister; each parent is thrown into a sea of professional jargon, assessments, diagnoses and labels they've never heard of; and a couple's relationship dissolves into what needs to be done for the child's needs.

My daughter, Jaimie, has Sensory Processing Disorder (SPD). Jaimie's level of sensory sensitivity is rather high so we've had to make many adjustments in our household to help her cope better. Each of us has been touched by, and has learned to deal with, her needs in different ways. No matter what, though, we've always tried to maintain a strong closeness among us.

Here are some the things a family can do to build, nurture and maintain their bonds, even in the toughest of times:

For the Family:

(1) Encourage open and honest communication: Each person has a unique perspective is affected by the child's special needs differently. A great idea is having daily or weekly family meetings where everyone has the chance to express his or her concerns. Each person should be encouraged to talk about his or her feelings and concerns. Good communication helps to keep stress levels down and negative feelings at bay.

(2)Acceptance: The major drawback to not accepting or even acknowledging a child's special needs is that it can be confusing for siblings. Children are perceptive. Even if parents don't talk about what's going on, they'll still know something is wrong. Of course, what you tell siblings is age appropriate because too much information can cause more worry or anxiety. Tell them what they need to know and can understand for their age level then answer questions as they come up.

(3) You are the most powerful teacher: Basically this follows the psychological theory that modeling is important and effective. Children watch our every move. Show your child that it's okay to be worried, upset or frustrated but we must try to use effective methods for dealing with it. Once when Jaimie had been having a sensory-overload triggered fit for almost an hour, Jordhan went up to her and said, "It okay, Jaimie. I still love you." (That's what I always say to Jaimie when she isn't responding to me.) Kids are amazing.

(4) Remind siblings they're appreciated too: One day after I'd worked with Jaimie on her sensory exercises, I found Jordy on our stairs sobbing. Because Jordy was usually a happy-go-lucky girl, I was concerned. I drew her close and asked, "What's wrong with my little Jordy?" She looked up at me and whined, "You love Jordy too, Mama?" It was then I realized each person in the family needs to be reminded how important they are too. This helps each person know they are still loved and appreciated even if the focus is on one person temporarily.

(5) Focus on the quality of time, not quantity: It is essential for each parent to give each child his or her special time. This is especially important with younger siblings who don't understand the extra time the parents have to spend with their brother or sister is actually work. Older children may understand but their feelings may still be hurt when Mom and Dad can't do things with them because of an appointment, sensory exercise time or other such things.

Play a game, go to the park, read a book, tell a silly story or joke, run around in the basement, or just sit and cuddle. It doesn't matter to them if it's for ten minutes or a few hours. All they want is their own time.

(6) Being fair: We try very hard to be fair with discipline and attention. Everyone, even Jaimie, gets a time out when rules are broken. After all, she's still a typical six-year old in many ways: She's defiant, tests her boundaries and fights with her sisters and brother. She's not excluded from discipline just because she doesn't understand things the same way Jordhan does. We just explain it to her in a way she'll understand.

When inequities have to happen, such as when Jaimie needed a special ball to exercise her tactile sense, siblings need to understand. Something we've tried in our house is keeping some of Jordhan's toys separate from her regular toys. That way, when Jaimie does need something new, we take a toy out for Jordhan that's been out of sight for a few weeks. Then she thinks she's gotten something new too. This, of course, is also age appropriate. You can adjust the method as the child gets older.

For the Siblings:

(1) Feelings are natural: All children need to express and talk about their feelings but it's especially important in a household with a special needs child. For the longest time, Jordhan wouldn't speak for several hours after Jaimie had a meltdown. It wasn't until she learned to speak better that she told us she was worried about her big sister and didn't know how to help her. Encourage siblings to talk so bad feelings are not displaced on the wrong people or things.

(2) Gimme the Facts: It's important for siblings to have accurate responses to the questions they may have about their sister or brother. It eases their worry. For younger children, it may be easiest to focus on feelings ("Jaimie is scared.") or present it in a way they'll understand ("It hurts Jaimie to hug.") They also need to understand their sibling is reacting to something else and isn't angry with them. They love their brothers and sisters so much and it can be just as painful to watch their hero suffer.

Jordhan became quite fearful of Jaimie because one minute she seemed fine, the next Jordhan accidentally touched her or did something out of turn and Jaimie exploded. Jaimie used to get very violent during her fits and frequently took it out on Jordhan, who never understood why. In the end, it's better to give as much information the child will understand than to say nothing at all.

(3) Let siblings visit the therapy or school programs: The point of this exercise is to meet some of the "special people" that work with their brother or sister. They'll get to see what exercises are done, what therapies are used and, maybe, even learn how they can help too. It's all a part of learning and understanding about their sibling's disorder. Plus the sibling may even benefit from being able to join in.

For example, Jordhan comes to Jaimie's Play Therapy sessions with Jaimie. It taught the girls how to play together. I've also found having Jordhan around gives Jaimie the courage to try things she didn't before. She sees Jordy having fun and thinks, "Hey, that doesn't look so bad."

(4) Welcome and encourage the sibling's friends to visit: For the longest time, we didn't entertain in our home. Not because we were embarrassed by Jaimie's behavior but because we never knew whether someone would be a trigger for her fits. Once Jordhan came into the picture, we realized it wouldn't be fair to do the same thing to her. She should be allowed to enjoy the company of her friends and feel she can bring them to our house, even if her sister may not like it.

It's important for siblings to be around--I don't like to use this word, but...--"normal" children. They need to see not all kids they'll be around will be as sensitive/sick/needy as their brother or sister. So do encourage friendships and playdates in your home.

If need be following a few simple rules will keep everyone happy (this is targeted more for younger children): only have one friend over at a time; have activities to do inside and outside, in case the child with SPD becomes unnerved; try to keep an "inside" voice rule; and, wherever possible, include the child with SPD. After all, it's important for them to make friends with "normal" kids too. And what better way to practice than with their siblings' friends-they've already been screened out by Mom!

(6) Wherever possible, let siblings resolve their own differences: Special needs or not, all children need to learn how to get along with other children and to resolve their differences peacefully. One of the more difficult things for an SPD child to do is to remain calm. They have a tendency to fly off the handle rather quickly. But they still must learn how to get along with others.

In our house, it's hard for Jaimie to allow Jordhan to be first, or do things a different way than she's used to. But we've tried teaching her to stop, breath, then talk instead of freaking out right off the bat. Try to get them to put themselves into the other person's shoes. It takes a great deal of patience and repetition but eventually it will catch on.

The awesome thing about SID children is they learn by continuous repetition and by working things into their own routine. When play first starts, and everyone is happy, just make a short remark in passing like, "Okay, you guys. Now, what are the rules about the markers?"

For Couples:

In all the madness surrounding caring for our wonderful but needy family, we can forget to nurture our relationship with our partner or spouse. This relationship is the backbone of the family and if it's not strong, the rest of the family suffers too. Steve and I have found two things very important and helpful ways to stay connected even in the most stressful times.

First, see if there's a community support group you can join, this is especially helpful for the primary caregiver. The love, concern and support of family and friends are helpful but, unfortunately, these people may not completely understand what you're going through on a daily basis. What a relief it is to talk with those who truly understand what you're feeling, thinking and dealing with. Such groups can allow you to release any pent up frustration or anger or simply provide a source for helpful tips from other parents who've been there. The best part is you can leave those worrisome feelings with your group and go home refreshed.

Second, parents need to have their time to be a couple. Go out on a date or, if you aren't able to get a sitter, just sit in the back yard (or balcony) and enjoy a sunset or cuddle on the couch. Be together with no discussion of children, assessments or treatments. It's so important to take this time as, sadly, the strain of caring for special needs children often breaks up couples who lose their connection. Happy parents make a happy family.

All in all, strengthening the family core from the inside out is an empowering thing. We may not be able to control what's happening to our child but we can pull together as a team and do what we can to help them.