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Published on Mommy Tracked (http://www.mommytracked.com)

Special Social Needs.

I have a friend who used to be an attorney. On Friday nights, the firm went out for drinks. She attended because her husband was available to take the kids so she could participate in this important office bonding activity. These evenings frequently lasted quite late. As she checked her watch, knowing she should get back to her kids, her colleagues laughed off the responsibility. One man kept looking at his vibrating cell phone as he rolled his eyes. His wife had brand-new twins at home.

 

My friend hated that because she missed the “golf outings” she wasn’t in as good a promotion position as those men who spent time networking with the bosses. Although she did the Friday Drinks, she was still an outcast because her social time was minimal compared to other attorneys. She complained to me that many times she’d be in the office diligently finishing her caseload while “the boys” were out having fun, and getting ahead based on social skills. She was productive in the office; they were productive on the links. She eventually quit.

 

Networking is vital in the working world. But working mothers know it isn’t so easy when we have responsibility at home. Similarly, social outings are important from a psychological perspective as well – a time to relax and not think about work.

 

Right after my son was born, my friends wanted to “take me out” and otherwise distract me from my new responsibility. My husband and my parents were game to babysit for a few times, but realistically mothers’ social lives take a hit when they have kids. As my son got older, friends issued invitations that included childcare. (“Hey, my nanny will be around, so you can just bring your kids!”) My husband and I were invited to parties, some of which would have a babysitter present. “No excuse!” they chirped.

 

But inevitably, my son would dart away. The babysitter wouldn’t know how to handle him. She’d have lots of questions or wouldn’t understand his needs. I didn’t get the luxury of relaxing at the party because I had to be on the lookout for him suddenly appearing in the midst of the grown-ups legs, snatching food from the buffet table, or pulling down an expensive Christmas ornament off the tree. Or, if it was a book club with fellow ladies, I’d be on edge because the nanny would eventually come forward in desperation, “He’s not participating” or “He won’t stop crying.”

 

Several times my husband and I went to events where we pooled money with other couples to pay for a sitter (someone trusted by a particular family, not a complete stranger.) But this didn’t work out either. We may have paid, but we didn’t get childcare because the sitter would give up. (And no, we didn't get our money back.)

 

In these cases, not only did we not get a night out to enjoy ourselves, but we’d come home even more stressed out because of the embarrassment over our son’s behavior.

Well-meaning friends used to say “Hey, we need to get you away from it all!” especially during the time when my son was expelled from Kindergarten. But it isn’t a lack of desire to get out, or lack of an invitation to go out, but rather what to do with the child? Eventually, the social invitations stopped because I had to decline them.

 

This is common with parents of special-needs kids. We are isolated socially already because our child’s behavior is outside of the norm. We get funny stares in public, lectures from medical professionals, and exasperated sighs from teachers. We are seen as damaged or lazy. And if we cannot attend social events, we are then seen as not interested. Plus, do you want to go have drinks with That Mother of That Child?

 

The child has special needs socially, but the parents end up devoid of social interaction as well.

 

Not long ago, I received a brochure for an Autistic Spectrum Disorder Respite Center. “Get away!” read the type over a photograph of a sunny, hilly location, “You need a break from your autistic child!”

 

Well, yes, especially during my son's preschool and kindergarten years, respite would have been nice.

 

But the catch was that this “respite center” didn’t actually provide childcare. In other words, the parents would have already needed some sort of caretaker. But if they had a caretaker, they wouldn’t need respite. And even so, I wouldn’t be so quick to trust a childcare option with unfamiliar people anyway. While some aides and therapists are wonderful, many in the field are not experienced or well-trained. There are many misconceptions about autism, and in many cases spending time with someone who isn’t knowledgeable in the field can create a major regression in the child.

 

Furthermore, this center talked about how parents would “learn the newest treatment strategies for autism!” Sorry, but if I’m “getting away,” I don’t want to hear autistic spectrum disorder propaganda. I’d want an actual break.

 

To my friends who roll their eyes when I decline yet another invitation -- Sure, I’d love to “get away” but inviting me out doesn’t mean I can magically go out. It is getting the childcare that is the tough part, not getting the invitations to socialize (although with repeated turn-downs, of course the invites stop too.) I am not trying to be a martyr.

 

I am lucky in that my job is nontraditional, and therefore has nontraditional networking “rules.” I couldn't be an attorney with the need to go to Friday Drinks or Golf Weekends. I already quit a career in neuroscience because research-based medicine is not a family-friendly position. It would have been next to impossible to have handled my son’s two expulsions while working an on-site job.

I know of other mothers with special-needs kids who do have more traditional jobs. But it is unlikely that they can then spend the time to do after-hours networking or socializing. County programs (for which my son did not qualify) close at the end of the traditional business day. Respite hours or childcare reimbursement through regional centers is not as easy as one might believe: these centers do not provide trained professionals for the respite or childcare. The parent is responsible for finding a caretaker, and then submitting that person’s hours for reimbursement. It sounds funny to me, because what I’d want is a pool of qualified individuals who can take care of special-needs kids, not payment for childcare.

 

Although I won’t turn down free money, I find it interesting that the role of the regional center is monetary, not service-based. (We need help with our kids, not a hand-out.) Of course the reimbursement is done on a sliding scale, so many dual-income families don’t qualify anyway. Another catch with the childcare reimbursement is that any working hours must be done outside the home. (I have filled out pounds of paperwork for the regional center, but in the five years my son has been a client, have not qualified for anything. It is not as easy as many people believe.)

 

Working mothers already have challenges juggling their office and home responsibilities. But add in “special needs” to the mix, and the stew is quite malodorous. Socializing is important for networking and for pure social stimulation. But unfortunately, many parents of special-needs kids get neither.

 

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I wrote this to give another side to the typical “working parents” story. The responsibilities required to uphold both a career and a personal life are daunting for anyone. Unfortunately, there are some extra challenges when you can’t just call up the local teenage babysitter or participate in an on-site childcare program (like at a gym) because your child has special needs. I am fortunate that online networking works pretty well for me - I blog at The Karianna Spectum [1] – and have cultivated online friendships with other special-needs parents. But, it would be nice to have more social opportunities not discussing special needs. Nonetheless, I consider myself lucky. There are many parents of special needs kids out there who are essentially “shut ins” despite zipping around town to various therapy appointments and red-tape meetings. It can be very lonely to not have traditional social opportunities – and for those who hope to further their careers, it can be quite limiting.

 

Other Posts in this Series:
Special Childcare Needs [1]
Special Work Needs [1]


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