Tips to Help on the Home Front - From a Parent’s Perspective
A diagnosis of autism spectrum disorder will impact your whole family. Daily life with a child on the autism spectrum presents unique challenges and affects everyone in the house. You and your spouse will now have to focus much of your energy on the needs of the child with ASD, which can take a huge toll on your relationship, your work, your relationship with your other children, and your well-being. Your other children may sense the stress, and may feel they need to compete for your attention. Relatives won’t always understand what you’re going through, and can unknowingly add extra pressure, when they’re trying to help.
As you navigate the changes your child’s diagnosis brings, there are a few key things you can do to help everyone in your family cope.
Siblings
Siblings will experience a range of emotions related to their brother or sister with autism. It can be hard when their brother or sister doesn’t want to play with them, throws tantrums or demands a great deal of Mom and Dad’s attention. Even from an early age, siblings can sense that their brother or sister is different, and they may be afraid to ask what’s wrong. Siblings may get jealous of all the extra attention going towards the child with ASD, and this could cause them to act out.
- Experts advise telling siblings about ASD and the challenges that come with it. Keep your explanation simple and age appropriate. And make it an ongoing dialogue.
- Encourage siblings to talk about their feelings. Be patient and show compassion. Seek out sibling support groups (e.g., “sibshops”)
- Teach siblings appropriate ways to play or interact with their brother or sister. They can even participate in your child’s therapy sessions by demonstrating play and social skills. This is a great way for siblings to feel included, and helping can be a big boost to their self-esteem.
- Don’t turn siblings into “little parents”. While it’s okay for them to help out the way any brother or sister would, don’t set them up in a role where they are overly responsible for taking care of or disciplining their sibling with ASD. This could make them resent him or her.
- Carve out alone time with your other children. As difficult as this may seem amidst all the demands on your time and energy, alone time can be as simple as reading them a bedtime story, or taking only one child with you to the grocery store. What’s important here is not the activity, but the fact that you’re spending time with your child, listening to him, and giving him your undivided attention.
Occasionally, you may want to plan family activities that don’t involve your child with ASD. This is perfectly okay. Typically, families don’t do everything together, and your child with ASD may be more comfortable staying home with a caregiver than going to a crowded amusement park, or having to sit through a loud movie. Consult with a qualified professional to help you integrate your child into family activities.
For more helpful information about siblings see:
Siblings of Children with Autism: A Guide for Families
by Sandra L. Harris, Beth A. Glasberg
Your Partner
In most families with children, there’s a lot of focus on the kids, but when a child has special needs, it’s even more so. Days can go by where you don’t even think to ask your partner how he or she is doing. The stress of searching and paying for treatment, dealing with your child’s behaviors and trying to juggle the needs of the family can be all consuming. But, you need to work as a team and keep your relationship strong.
- Respect your partner’s feelings. Everyone deals with the diagnosis of ASD differently, and at a different pace. You might be further along in the coping process, but that’s okay. Your partner will get there in his or her own time.
- Nurture your partner and yourself. Make the effort to listen to and show love for your spouse. A little hug or handholding can go a long way.
- Allow your partner to be involved in your child’s care. Often, one parent carries more of the load, and resentment can build, or one partner feels left out. Ask your other half to share in the responsibility.
- When possible, spend time alone together, talking about something other than autism. Putting the kids to bed at a decent hour is a great way to give you both a breather. If you can, call on a sitter, relative, or respite care so you can get out and enjoy a movie or meal together.
Once your child’s treatment is up and running, you’ll find even more time to do the things you used to. Eventually, things will get easier, and you will be able to plan date nights or enjoy more alone time as a couple.
You
Most important, don’t forget to take care of you. Eat right, get your sleep, and do what it takes to nurture yourself, both physically and emotionally. Your family needs you to be healthy and optimistic.
- Shift priorities and manage expectations. Maybe the house is not as clean as you’d like, or you don’t have the time to cook every night. Maybe you can’t volunteer at your child’s school right now. It’s okay. Focus on the things that will help your family most in the long run, and relax the expectations you have of yourself, and of them. Accept it, and put your energy where it’s really needed.
- Consider joining a support group or online forum to deal with emotions you’ve put on the backburner. They’re a great place to share your feelings with people who really understand. Other parents can tell you about specialists and treatment options in your area, give you parenting advice, and you could even make lasting friendships.
Tell Your Family and Friends
- Explain your child’s disorder to loved ones (or send them links to websites like this one) and let them know what your family is going through. Help relatives help you. Often, grandparents, aunts and uncles want to be there for you, but they don’t know what to do or say. When people ask if they can help, tell them yes, and tell them how. Be specific. Ask them to cook you meals, run errands, babysit or spend special time with your other children. Remember, your child with ASD is also a grandchild, niece or nephew. Everyone who loves him would love to help make it better if they could. Don’t be afraid to ask.