How to Include your Extended Family in your Disability Household.

Extended Family Special Needs grandpa standing looking at animals with grandkids

Extended Family

Special Needs Grandparenting? That’s a phrase you never heard even 20 years ago. Now, grandparents want to know. It’s their nature to want to help. So how do you involve your extended family in disability parenting?

Extended Family disability

Paying attention to grandparents and other extended family members, as it pertains to having a special needs child, is, unfortunately, a relatively new phenomenon. Support groups for Grandparents are still few and far between. Heck, there still aren’t enough support groups and resources for siblings as far as I’m concerned. Let alone aunts, uncles, and cousins. And, as special needs parents, sometimes when we’re just in survival mode and trying to keep our own nuclear unit running smoothly. We neglect the relationships that are beyond our immediate household. Here are some ideas and tips that I’ve read and tried along the way.

We all need a support net, we’re not super-parents.

Extended Family Support

  1. Be honest with extended family without using scare tactics or worst-case scenarios. I’ve seen a lot of parents hit their Facebook walls with some pretty crappy stories and posts. If you want your family to “get it” as far as what you’re living with day to day, there are ways to effectively do so without scaring them off. Save the scary stuff for the support groups and appropriate audiences. I’ve done this in the past myself, I find it happens more often with the newly diagnosed families. During that difficult time–stay away from the internet and Facebook. You can educate and inform without using worst-case scenarios and intimidating people.
  2. Recognize that they are experiencing a loss too. My stepbrother’s children spend many overnights at my parents’ house, without their parents. I don’t know that this is ever something that will be appropriate for my older son to do. Even though we had K’s diagnosis, but before we knew the extent of his disabilities, my dad said “I can’t wait until he’s old enough to spend the night!” This is  a loss for him. His relationship with his grandson has been altered just as my mother/son relationship has been altered. If you’re in a family that still utilizes and honors the roles of grandparents, they may be experiencing loss. Experiences that they thought they were going to share may never happen. Help them adjust to new and different expectations just as you have had to. Different, not less. Help them learn new ways to enjoy their grandchildren.
  3. Recognize that for many in older generations, mainstreaming was not the thing. Even being exposed to a child with disabilities on a regular basis may be new to them. Allow them time and gently teach them along the way. Old dogs can be taught new tricks, it just sometimes may take longer to break down stereotypes and older ways of thinking. I graduated high school in 1988, which really isn’t that long ago. But I’m surprised at how different things are compared to when I went to school. Lots of therapies, teaching methods, how we view and treat the kids with disabilities–that has come a long way in just one generation, and not everyone may be up to par.
  4. Find your teachable moments and use them. For cousins, especially those not in school yet, this is probably their very first upfront and personal experience with a child with different needs. Explain things on their level–why the child is acting out, why the child may not be held to the same standards for some behaviors and so on. Find common ground between your special needs child as his typical cousins, whether it be a favorite toy or favorite food. When you find common interests, it’s amazing how they can relate. It is fun and exciting to me as I am watching my youngest son develop this knowledge. I can see that he really is treating everyone the same and he’s not afraid to approach those with disabilities, or who look, act or sound different from him.
  5. When it comes to family gatherings, especially loud and noisy ones, be honest and plan ahead. Take two cars and bring special food if necessary. Ask your hosts about expectations you are unclear about. If you are not attending, tell them why. Remind them that you want to be invited again. Repeated refused invitations may result in fewer invitations. Even if you’re not feeling up to going, go. Unless you are predicting a complete disaster (and moms can predict them–listen to us!) at least go for a little bit. Remind yourself that this may be one of the few interactions with “typicals” that your child gets. It also helps you to feel like you are a part of the family and not alienated all the time.
  6. Invite family members to events. I picked an aunt in our family and I invited her to K’s Grandparents/Special Someone Day at K’s preschool when he attended, and to the big Huddle Up for Autism Day with the Philadelphia Eagles. It did wonders for enhancing our relationship and she learned so much. At K’s school, they went over all of the different disciplines and what they do. And you know what–at the Eagles event, she commented to me “It seems like there are so many more boys here than girls.” Duh! What an “A-ha!” moment! I mean, those of us that are embedded in this–we know the stats in our sleep-1:110 kids, 1:70 boys. But she didn’t know. What else don’t they know that is seemingly obvious to us? Educate them, they want to know more but may feel awkward asking questions.
  7. Recognize that there are just going to be some events and gatherings that are too much for your child. If it’s something you really want to do, this is the time that you trade off with your spouse or reach out for help in terms of a babysitter or respite.
  8. Be approachable. Consider opening a Caring Bridge website (it’s free!) or some other form of communication for sharing. Encourage family members to ask questions, even if they seem like rude questions to you. Only by asking can they get honest answers and develop an understanding. You open the door to communication–this may be new and awkward for them, so instead of saying the wrong thing, they’ll choose to say nothing. That in turn just creates a huge gap that can become difficult to close. You reach out to them first. At the same time, when you’ve done all you can to build a relationship, recognize that in rare cases, there are just some people in this world that for whatever reason, are not going to be a good support for you. If you recognize and accept this, you’ll be less disappointed later.
  9. In educating, make sure that your family members are aware of when you’re venting. Even if you let loose, add a “Sorry, I’m just venting, I’m so frustrated!” and explain how you’re solving the problem. Let me explain-I was at an event recently and there was a grandmother there. It became obvious that daughter was having IEP struggles and in their opinion, granddaughter was not getting the services she needs. The problem is–grandmother came to said event with an agenda–she wanted to get those services for her granddaughter. And it was really an inappropriate venue. Believe me–I get it. I have a very strong Mama Bear instinct, and I get the desire to want to secure services for a daughter and granddaughter, and to want to help. That energy, directed appropriately, could do wonders for that family. Which brings me to the next tip….
  10. Direct their energies if they want to help. If they want to volunteer, give them some ideas on how they can help. If they are intimidated at the prospect of babysitting, provide training and only have them do it for short increments of time if they’re willing. Even 90 minutes for a dinner out is welcomed! Solicit small donations, even gifts in kind, for schools or organizations. Do a charity walk, or a few hours of phone work. The possibilities are endless.
  11. Recognize that everyone learns and develops their comfort level at their own pace. People learn at adapt at different rates. Some people may show their true colors and really come through for you. And others…may not. You have to decide what is worth the extra effort and when to cut your losses.

Relationships with extended family don’t have to disintegrate just because you have a child with special needs. But if left neglected, they often do. There are going to be times when you’re just doing all you can to keep your feet underneath you and not have time to nurture the relationship. But be aware of this and get back to it when you can. One of my favorite women on the planet coined the term “It takes a village…” and it’s true. You and your special needs child need your extended family as a part of your support network. It’s a fact–the families that have better support networks just fare better overall. Keep stringing your support net, and it will be there to catch you when you need it.

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