My father once told me “Expect nothing and you will never be disappointed”. I can’t say I agree with that but I do agree that expectations can cause a lot of stress and anxiety. That feeling or belief about how successful, good, or positive someone or something will be often sets us up for failure.
Of course we need to have goals but I think we need to always ask ourselves ….. these expectations ….. who are they for?
When thinking about expectations there is no slope as slippery as the one parents with special needs children are on and of those, the parents of children with invisible disabilities have it the hardest.
As we approach the family gatherings, school celebrations and other Christmas festivities, what seems effortless for parents with neurotypical children is anything but to those with children with special needs. We need to plan and be proactive to assure that not only our special needs child but our other children are able to have a fun and uneventful (yes you know what I mean) experience. As enlightened, compassionate and educated as we are in our children’s disorders we still get that kick in the stomach feeling when our children melt down or become disregulated in social situations. Being embarrassed does not make you a terrible parent but if we honestly look at why we are embarrassed it comes back to expectations, not ours but others.
A child (or teen for that matter) who has not yet acquired age appropriate social skills or struggles with facets of their disorder may easily become over stimulated or overwhelmed in social situations. What may seem like fun to you or your other children may in fact be torture for them. I think it’s important to keep in mind their expectations for the big gathering with cousins and other kids. Do they expect to have a blast but not think of all the obstacles that so easily derail them? Do they often make the same social mistakes over and over yet expect a different outcome? So how can you ensure that everything goes smoothly ….. you can’t …… but there are things you can do to that will “up’ your odds.
No one knows your child like you do so anticipate and prepare for the usual pitfalls and focus on your child’s comfort zone. Does your child have a favorite toy? Does he like sharing it? Having a talk with them about what they want to bring gives them the opportunity to collaborate and create a scenario they may encounter. Yes, it is important to teach children to share but as with anything else there is a time and a place for everything and this may not be the time. Do plan on bringing toys or games to keep them busy but keep in mind that toys can be broken or frustrating to play with when interacting with others. Talk to your child about where you are going and who will be there giving them the opportunity to share with you their excitement, and for some, fears. If your child gets easily overwhelmed and uses a quiet place or alone time to self calm at home, brainstorm on how you can accommodate that in some way at the location you are going to.
I’ve done over three hundred interviews and off the top of my head I cannot think of one disorder or disability I have covered that did not have sensory issues as a feature. Sensory issues are HUGE! Lights, sounds, smells, textures are land mines for some of these kids. Over all other issues I think sensory triggers are by far the hardest to deal with and the hardest to avoid. If you have not already, start a sensory tool box for your child. Find what works for them, some kids do well with lightly shaded sun glasses for fluorescent or bright lighting, chewables like Kid Companions Chewelry for those who chew on sleeve cuffs or collars when anxious, seamless socks or soft clothing for those who have issues with different textures. Fidgets like stress balls or squeeze toys that keep hands busy can be very helpful in helping a child self sooth. An Ipod with music that regulates them (and it may not be Mozart by the way) for those with sound sensitivities gives them a chance to cancel out some of the audio that not only over stimulates them but may physically hurt them. Is it rude to have your child or teen wearing ear buds at a gathering, well it’s not optimal but whats really rude is knowing that your child may meltdown or rage and not taking measures to avoid it. Whatever helps them will help you.
Some children with obsessive compulsive disorder or autism do not like being touched or hugged. Kids with OCD often feel “uneven” if touched on one side and not the other making them very uncomfortable. If old enough, let them participate in finding a solution to those aunts and grandmas hugs and pinches. Let them be your guide and do not dismiss what you may not be able to feel. Children with Tourette Syndrome often have discomfort when suppressing their tics, it was explained to me by a 12 year old boy that it is like an itch you just cant scratch and it distracts you from being able to focus in school or have fun at parties. Here is another time to discuss finding a place to release some of the tics if they are suppressing them. Often when kids know they have an “out” they are less anxious and less anxiety helps to decrease obsessive rituals and thoughts as well as tics. Kids with ADHD and hyperactivity are just that, hyper active, this can be a great thing on a warm summer or spring day running around the park or someones backyard but at an indoor holiday party they may not make the perfect guest. Consider a little exercise before you go, maybe a quick run or jumping jacks to work off some of that energy and get the calming endorphins going.
Special needs kids who are taking medications need to stay on schedule. Plan meals and snacks around medication times to avoid the crash that often accompanies stimulants or irritability that accompanies a missed antidepressant time. Ask your host what time they plan on serving meals and what they are serving so you can plan accordingly. Better you be a little forward than your kid be very miserable.
If your kid is one of those that hits the wall as they say, the ones that quite clearly have that cut off point where they have had enough, consider taking two cars if you can. There is nothing harder on everyone than an overwhelmed, tired and stick a fork in me because Im done kid. It is not fair to the siblings and it is not fair to the child. Having two cars gives the child the option (again when they know they have an out they often don’t need to use it) to go home when they need to. Yes, it is inconvenient for one parent to have to leave but it is better for everyone. Going home should not be a punishment it should be a compassionate way of letting them know that you “get them” and you understand that for many possible reasons they may be tired or overwhelmed or just plain done. We need to remember that children with neurobiological disorders can be exhausted by their symptoms and are not always capable of long outings the same as others are. Offering them an option of going home to watch a movie or rest is not indulging or spoiling, it is compassionate parenting. If your child “hits the wall” talk to them about it, ask them how they would like to handle it. As I said, this is not a punishment, this is an act of kindness and a way of teaching your child to self advocate and express their feelings, it is also an opportunity to build trust.
Now we get to the biggie —- the buttinskies!
Rarely is there a time that a parent with a special needs child enjoys parenting advice from those who are not …. just sayin. It really is up to you how you handle discussing your child’s needs and how much you want to divulge. It also depends on who you are talking to. Let’s face it, some people just do not get it and can be judgmental of your parenting and choices. A gathering is not the place to advocate or educate those who may be uninformed. There are of course very understanding and accepting people too but for those who are not, unless they have a child with differences or teach children with differences chances are they are just not going to sit, listen and not be buttinskies. Deciding on how forthcoming you will be really depends on the needs of the child. Being forthcoming and being an open book are two different things. You do not need to go into every nuance of your journey, the diagnosis, medications if there are any or therapies, they are not an appropriate dinner topic. If your child struggles to the point where you would need to put the above plans into affect then perhaps it may be best to let your host know ahead of time that you may need to leave early or ask if there is a quiet place to sit for a few minutes if needed. Being proactive does not just apply to the kids, being proactive with those who may pose a problem is important too. It is your responsibility to ensure that your child, your family and yourself are treated with kindness and respect. The only way to do that is to educate those who simply may not understand through no fault of their own. It took you a long time to educate yourself on your child’s behaviors and you cannot expect others to simply understand. Unfortunately we also may need to come to the realization that there are some people, that for no lack of effort on your part, are just never going to get it. In a lot of ways its like politics, a touchy subject that no matter how rational or articulate you are, nobody is changing their minds. For those so rigid in their opinions if not major people in your child’s life, let it go. Advocate, educate but know who matters and who does not and do not base your parenting or goal setting on other peoples expectations of your child or you.
So when dealing with “expectations” for yourself or your child think about who the expectations are for and if they are realistic. Yes, there are social norms and yes your child does need to learn them but to do so you need to set attainable goals with safety nets in place to reduce failure. Use these gatherings as teaching tools for building future social skills. Take time to point out everything they did right before you approach where they may have gotten it wrong. Find out how they thought the gathering went instead of telling them, you may be surprised at how different your perceptions are which may lead you to better understanding their actions and pinpointed areas of weakness.
These kids deal with enough disappointment and failure in their lives, plan ahead and give them the chance to have fun and shine.
LISTEN TO THE INTERVIEW WITH DR. LYNNE KENNEY DISCUSSING – EXPECTATIONS WHO ARE THEY FOR