What do you do when your family doesn’t accept your special needs child?

by Janis



                               

I have been very lucky that my immediate family is very loving and accepting of Austin. At home he is not treated any different than any of the other grandkids. When we venture out into the world well, there it is a different story. But home is our soft place to fall.

Maybe it’s because, as a family, we’ve had a lot of practice. You see, Austin was not the first baby born in our family with special needs, although he has significantly upped the ante and wins the award for Most Intense Medical Care.

While there are a few family members that don’t quite “get it” and cause me to roll my eyes on occasion, they are few and far between.

Still we are lucky.

Lucky that the majority of our family is close-knit and caring. Not all families raising children with special needs are so lucky.

Often I am contacted by mothers who feel very alone, because they are.

Their families don’t understand the dedication it takes to raise a child with special needs. Sometimes they stop calling or coming around and often times they blame it entirely on the “needy” child.

So these moms can pretty much forget even trying to get someone to learn the intricacies of tube feeding, suctioning or seizure meds and get some much needed help or a break at home.

In the beginning of our journey, I lived a 1400 miles away from my family so I can understand being alone. But again, I was lucky. My mom packed her bags and came to help me care for Austin for a few months until we could move.  Not everyone is in a situation where that type of cross country move is possible.

When its physical distance that separates you it is hard to handle, but much easier to understand. When your family members live 2 miles away and refuse to see you because they cannot handle seizures, your child drooling or needing a diaper change at age 7…well that is just heartbreaking.

I often find myself at a loss for practical advice in these situations because it is foreign to me. My heart goes out to these parents, it truly does because I would be so lost without my family’s help.

So I need your help. I need some advice for these moms.

What would you tell them when they ask  ‘how do I get my family to love or accept my child?’

Janis chronicles her son’s medical journey at Sneak Peek At Me. She is an advocate for medically fragile children and families living with a rare disease diagnosis.

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1 Mandy July 8, 2010 at 1:32 am

Gosh, I can’t even imagine that kind of environment, where your family doesn’t love and accept your child just the way he or she is. I’m an outsider to your world, Janis, but I think the key is education.

Although everybody feels uncomfortable at first when they have to adapt to a difference, I think it’s rooted in lack of exposure. The more I read this blog or experience kids special needs in person, the more I know about what’s appropriate to say and do with parents of kids with special needs.

And yeah, you’re going to screw up and say the wrong thing, but my guess is that you’d rather have me accept Austin and love him as he is and say something stupid along the way and learn from it than to ignore him and treat you guys like he’s not a person.

I hope the families of the people who asked that question will get out of their comfort zones. Educate themselves (or allow that family member to educate them). Understand that this child is so precious and deserves all the love in the world.

2 Donkey burger July 8, 2010 at 2:17 am

Well, it would depend on rather they are naive, or ignorant.

If they are naive, often, like Mandy says, education helps. Those who need the help won’t ask for it, however, so it’s the parents’ or kids’ responsibility to initiate this.

Ignorance, however, is deliberate and needs insight to correct. An ignorant person with insight is rare. Unfortunately, the last thing you need in your support system is an ignorant person without insight. If such people are in your family, you need to look elsewhere for support.

3 kristenkj July 8, 2010 at 6:03 am

I think, as the others have said, you can start with education. There are some people that just don’t understand, and if you help them to understand, maybe it will get better. And then, there are some people that are extremely uncomfortable with a child with needs, and I consider that a form of insecurity or lack of confidence…they are afraid they can’t handle something different. I guess, to be honest, I would say that with this type of person, you don’t get them to love and accept the child. And unfortunately, that relationship kind of dies. And it will hurt. But I think it will hurt less than trying and trying and trying, over and over, and being rejected over and over and over. You don’t need that, and neither does your child.

I learned a long time ago that there are people in the world that will be there for you when you have trouble. And there are those that disappear. And most of the time, neither one of those types of people are going to change. It’s a very tough way to find out who your friends are.

4 Jen July 8, 2010 at 6:57 am

Education and time does help, but some families will never come around. Develop a good support system of friends who are willing to accept your child- one of the good things about being an adult is that you do get to choose who your ‘family’ really is.

5 Ashley July 8, 2010 at 9:07 am

I agree that often in this situation education is a great course. Often I think a negative reaction by family can be rooted in fear. They may not have been exposed before and therefore have a fear of what they don’t understand about the childs condition. They may be afraid of doing something wrong or offensive and therefore they choose to ignore the child or just stay away. I think in this sitution that said person may just need some open direction/encouragement as to how to proceed from parent. Once they feel more confident in the situation they might be more open/ willing to learn.

6 Holly July 8, 2010 at 12:25 pm

I have experienced both family who desperately love all my children (special needs included)but cannot live close…and also other family who can’t handle the reality of our struggles and so choose to remain distant. My advice for the latter group is don’t amputate them, but don’t depend on them either. Even though they cannot be the support they should be you don’t have to give up on a relationship with them. Include them in your child’s successes and update them with the joys…just don’t expect too much from them. Lean on those you can trust with your struggles and don’t try to make those who can’t handle it fill a roll they are not capable of. Our pain comes largely from our expectation that our family should be there for us and understand because they are family…but the reality is some people just won’t get it, whether they are related to us or not. Some friendships are naturally closer than others whether you have children or not, special needs or not; and the same is true of family.

Food for thought: all of my family live 1000 miles or more away… so I’ve pondered this Proverb a lot, though I can’t say I’ve totally got it figured out: “Proverbs 27:10 Do not forsake your friend and the friend of your father, and do not go to your brother’s house when disaster strikes you – better a neighbor nearby than a brother far away.”

7 kadiera July 8, 2010 at 1:20 pm

We’ve taken to making friends who are willing to be involved with our son, rather than trying to figure out how to get the family to be involved.

Don’t get me wrong – all his grandparents love him dearly, but one set is out of state (and has their own issues), and the other is just not capable (emotionally) of dealing with the day to day reality of caring for our son – they won’t change diapers, they won’t help clean up when he vomits, so asking them to suction a trach or even hold a g-tube feeding syringe is asking too much.

We haven’t cut them off, but we also haven’t put forth any effort to involve them in a long time.

8 Maggie Jane Besterman July 8, 2010 at 1:34 pm

You’ve said exactly what I would have, so I won’t post something redundant. The hard truth is that some people don’t want to learn; they are willfully ignorant, and happy to be so. Very sad, but true.

9 staying afloat July 8, 2010 at 5:05 pm

I would just like to add that there are a lot of people who are just plain freaked out by our kids. Maybe they wish they could handle them, but they don’t know how, no matter how much you tell them. They don’t know that they are capable of handling it.

So you handle them as “Special Needs Relatives” and implement a behavioral program: you start slow with progressing steps. A five minute visit, then fifteen in a setting in which your child does well, then half an hour, etc.

Of course, they have to be on board for this. But you’d be surprised how many people are just scared, and appreciate the acknowledgement that it’s normal to need help with dealing with our kids.

And yes, neighbors are who I depend on day to day. It’s a geography thing, but I still think my neighbors who see my son every day are often better with him.

10 Nancy Brown July 8, 2010 at 6:33 pm

We moved away when our child was one. We moved to a different state. I found a support system. As we staarted struggling with infertility we decided we should move back. We went through 2 very difficult brain sugeries for shunts and we really wanted our family support. That support was there when we told them we wanted to come back. Everyone offered their support. EVERYONE.

We live 15 minutes from 2 of my DH’s family. We have yet to have any of them come when we have had a surgery. ( we JUST did ten days ago) not ONE of them called. No one brought a dinner. WE have and they don’t have any special needs, but had a need.

We have found that others DON”T get it. that when we opened our home to a sister she realized his life was different and she was happy to help. The others NOPE

in fact 2 times during sunday dinner we heard the R word. It makes me sick. My mom and dad live 2 hours away and not close enough to a childrens hospital or I would be there neighbor. They drive up all the time.

It is sad that others dont’ get it. Especially family. there are no great words for them… Sad…. but true

11 KDL July 9, 2010 at 12:00 am

I guess the only other thing I would add is show them some progress, if possible. When we first figured out what was going on with my daughter my mother told me flat out that she couldn’t handle her alone. At that time she would bolt, throw tantrums, hit, kick, scream, you name it. Slowly WE figured out the right supports to *help* keep her on track, and as we have shown my parents these tools they have seen her become a charming, if challenging, little girl. In a few months they’re going to come stay with our kids so we can take a short trip away…and they are totally on board. My in-laws are a different story. They’re pretty much in denial. When she misbehaves we’re bad parents, when she behaves we’re good parents, and somehow the contradiction never enters their thinking. So as others have said we don’t rely on them for support at all – just share the family news and move on. Gaining the progress (especially in cases of medical needs) would be the hard part, so I agree that support should be found in other sources.

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