There are still some groups of people, types of disorders, or general nuances that “OK” to make fun of, and Ridicule, all in the name of “It’s only a Joke”.
I bring this up because lately, it seems, many are using the
ending “tard” with an explicative in front of it to make a joke or refer to someone or some thing that is beyond the obvious. And I wonder how many know what they are truly saying or inferring.
The Word “Retarded”, when used in it’s true and unbiased meaning, has never bothered me. It is when it is used to insult, or to demean, that it is unacceptable in my world. So to use it’s suffix with a swear in front of it, well, that could possibly be the worst. It is like adding insult to injury, almost literally. I am hoping that this new-ish word grouping will loose its popularity, as did the once accepted use of the word “gay” in the same instance, and become just a blip in our society’s misjudgment of each other.
As my Grandmother always told us when she heard someone cussing, “There is always a better word, Show them how Smart you are.”
The crazy, cold, dreary winter is here, and spring is no where to be seen. In our neck of the woods, good ole’ New England, the frigid, bleak weather can last until April, which starts our rainy spring. Typical children and adults as well, can become depressed, and in the children’s cases’, behavioral. Now add Autism to that equation, and it’s no wonder that most occurrences of meltdowns, tantrums, and overall bad attitude, happen during this time of year.
So how do you survive this time of year with an Autistic child?? It takes a little creativity, some pre-planning, and a whole lot of patience. Think ahead of the game. February vacation will be here soon enough-do you have some respite and activities set up yet? Make calls to all your back up help, respite providers, and capable family members, and book actual days and times for them to help out. Put it on the calender. A few hours off a day can make all the difference to an exhausted caretaker.
Think of fun, unusual things to do. Get a 6’x6′ tent, typically on clearance this time of year, and camp out in your living room, or the child’s bedroom. I also get an area rug for underneath it , as I have hardwood floors. With a plastic bin for books, flashlights, Legos, and music headsets, and you have a brand new playground.
Rotate the child’s toy. Put some that they have become bored with, away until summer vacation. Bring out some of the new items from Christmas, along with things you have most likely stored in closets and toy boxes. Forgotten toys become new ones. This is best done before hand, with no kids around, as little ones can become attached to certain items, and stress out when they are put away. It’s a good time for a new puzzle, a classic children’s movie and nothing beats a coloring book with a fresh box of crayons.
And, of course, take the child outside to play any time weather permits. Exersize of any kind, up until an hour or two before bed time, will make them happier in general, and easier to get to sleep.
So start thinking of people (helpers), places (indoors and outside activities), and things (rotated and new toys and items), that will make the long Hum-drum winter go by. And above all, remember to take a deep breath, a step back, and take a little time off for yourself. Because even adults can have a meltdown, when they are stressed out.
The Holidays are now over and the New Year has begun. Now what. Time to get out all those goals you have been reciting to yourself once January came around. Diets. Organization. Frugalness. Great Hope, for you and your family, until normality re-sets in. Back to old habits, with maybe a few new good ones thrown in.
For me, none of this take place until the snow is gone. My true renewal. When my garden starts to tell me it’s time to be reborn. Only then can I start to think of the new year’s goals. I need to see the birds return, the trees start to bud and the daffodils poke their heads up towards the sunshine. Here in New England, that’s going to be a while, as we have just begun our deep freeze.
So it looks like I still have some time for comfort foods, warm blankets and old movies. Still a few months before I need to re-design my life and body, with labeled bins and low carb meals. Still a little time before I need to start what I truly do every spring-Procrastinate
What do you get a child that does not play with toys or just breaks the toys he does have, and everything else, for that matter. This can be a tough problem not only for the parents of these children, but the friends and extended family that rarely sees them but once a year. Welcome to the holiday frustration of having an Autistic Child.
There are a few basics to keep in mind when attempting this exasperating task. Function level of the child, and what the child enjoys doing-right now. The function level of the child, can be the hardest to figure out,especially if you are part of the extended family,or a friend, and hardly see the child. Age appropriateness won’t work here as most of these kids are either developmentaly or socially delayed or both. So what a typical 10 year old boy would love, would be inappropriate and even harmful to the Autistic child. It never hearts to ask, “What kinds of things is Mattie into these days?”. This would be a much nicer question than, “is Mattie still using baby toys?”. If you can’t ask the parent direct, ask someone who is close to the child-just make sure they give you an accurate picture, and not well meaning misinformation.
Now the big question: What to give?? It’s ALWAYS good to go with the KISS method- Keep It Simple Stupid. Keeping in mind the child’s function and social level, a higher functioning child that has social skills trouble, would benefit from things that his peers could relate to, and even interact with the child with. A hand help game with a game at his level could inspire peers to interact with the child and promote socializing. I once heard of a family that’s Autistic son only wanted a Nintendo for Christmas, that’s all he ever asked for. So every year the family bought him the latest Nintendo and donated the old one to charity. The child was thrilled every year, and another, less fortunate child, got a great gift as well.
If the child likes books but only a certain kind, and has them all, replace the worn out ones and again, donate the used ones. Same goes with DVDs, but before I wrap Mattie’s new DVDs I take the DVD out of the package and put it aside as Mattie will ALWAYS scratch the brand new one even before it gets played.
My favorite thing to tell people to get Autistic children, is an indoor swing. A few great companies for these are: http://www.southpawenterprises.com/Default.aspx, http://www.abilitations.com/, http://www.flaghouse.com/ Living in the North East, where we can have days,even weeks of bad weather, it’s great to have an activity for the kids to do that will keep them entertained. And you really don’t need a lot of room. Mattie’s swing is in our family room, with a 10 foot clearance all around. It is hung from a perminate weight bearing o ring that we had a licensed carpenter attach to the ceiling joist, with an adaptor kit from the swing company. If you are thinking of doing this, a licensed carpenter is a must, and instillation should be done before the holidays. There is nothing worse than a child unwrapping a swing and not being able to use it because the carpenter wasn’t available before Christmas. These types of swings can usually be funded by allocated funds by the ARC or Family Services of DDS, formally DMR. The ARC can be reached at http://www.thearc.org/NetCommunity/Page.aspx?pid=183
Just remember, most Autistic children have no idea how much you paid for something, so this gift TRULY needs to come from the heart, and with a little research before hand, you should be able to make the child’s Chrismas a happy one. But, as always with Autistic kids, you just never know how things will effect them-so just go with the flow, and enjoy what you can!!
The Holiday Season officially begins with Thanksgiving. The time of year, you can see the visible shudders of parents and grandparents of children with Autism.
While your child’s social awkwardness spotlighted, so is the ignorance of those not normally around an Autistic child. Every cliche that has ever been said about Autism will be said over, and over again, during the Holidays. Relatives seen only annually will have great expectations of the Autistic child from a year ago. By now, the child should be speaking, toilet trained, reading, sitting quietly at the dinner table, etc. And why aren’t they?? Don’t you have them in the right school or Program? Well, you will be told, “Don’t Worry, My friend’s cousin’s daughter’s best friend’s son started talking magically at 13.” There, You see! Everything will be all right. Your child just needs more time, that’s all. It’s as if the more it is recited, the truer it becomes. You will be given the names of books to read, websites to look at, and yes, the name Jenny McCarthy will come up, and how she “cured” her child.
What it comes down to is tolerance. Not towards your child’s behavior, this time, but towards those who truly do not understand, and perhaps only ever remotely try to, for a few days out of the year. It is brain numbing enough for them to endure Autism for Holiday season, or God forbid, year round. The best way to deal with these people?? Nod, and say nothing. Things are too hectic to truly teach them anything this time of year, and frankly, they really don’t want the specifics of all the ABA and Hippotherapy that your child is getting, nor do they want all the updated statistic regarding autism and it’s diagnosis.
What they really want, deep down is to show, in their own awkward way, that they care. Because, family is family. So, just nod, pass the gravy and take a deep breath. Soon enough, they will be gone, you will be doing the dishes, and life will be back to normal. At Least, your kind of normal.
Get to a Support Group. And not for the reasons-initially- you may think.
First, obviously you’ll need to find one. A great resource for this is The ARC http://www.thearc.org/NetCommunity/Page.aspx?pid=183, and the Northeast Arc http://www.ne-arc.org/index.htm. Which is, in general, for all Developmentally Disabled people. Also ASC -Autism Support Center in the Northeast http://www2.shore.net/~nsarc/, can be a great help.
Many would believe that when you go to a support group, everyone sits around and cries while others console them. Once in a great while, this does in fact happen, but mostly it is an exchange of ideas on how to cope with your child and his/her unique problems. And many times there are some great ideas for resources-funding- for your child’s needs.
THIS could be some of the BEST information you will ever receive regarding your child. There are resources out there that you need to tap into. Being in a support group can show you the way to these, and also towards great workshops, lending libraries, PCA help (Personal Care Attendants), RESPIT help and funding, and “allocated Funds”-the magic wording for monies given to you to be spent appropriately on your child.
So if you are not in a GREAT Support group, like mine,with amazing staff moderating-“Hello to Maria and Nicole”- find one. And quickly.
And yes, in the end, you will find friends who will join you on your journey to find well being, for both you and your child.
Don’t wait in Waiting rooms. Doctors Appointments, Dentist Exams, and other frequent visits that require a wait before being seen, can be a deal breaker for how well the actual visit goes, with an Autistic child. Call ahead before you get to the office of the appointment, ask them if they are running on time, and tell them your child is Autistic and doesn’t wait well. Ask them to take your cell number and call you when they are ready for you to be seen. Assure them you will be right outside their door, and just want to keep your child calm and get the most from your visit. I even have popped my head in my Pediatrician’s office to tell them “We’re here!” and then Mattie and I do laps in their nice big building, till they call me that the nurse is ready for us. It NEVER hurts to ask for this kind of help, they would rather have your child calm than tantruming in their waiting room!!
Mattie did SO well this Halloween, thanks to his on going ABA training, and his PECS “Trick or Treat” card his teacher made him. We went to about 15 houses with my twin Godsons (one of which is also Special Needs), and everyone was in a great mood and VERY well behaved!! Remind me to bring that card again next year, because that was the key. Not only did Mattie use it PECS appropriately,meaning he handed it to each person opening the door, and then pointed to each word as he has been taught, but now my neighbors are more aware of Autism and it’s impact on not just one child, but the entire community! Win, Win, for everyone this year!! (Oh, and I scored a few Reese Cups as well!!)
Autism in the family can be a harsh teacher.
You acquire skills, that never, in your wildest dreams did you think, you would ever need to know. Like how to defuse a potential tantrum, with calming gestures and a gentleness in your voice. How to get a ten year old to take foul tasting meds, day after day. And the ever un-popular, how to change the diaper of an older child.
You are asked questions, that no one would ever ask a parent of a typical child. How are you going to “handle” him, when he gets bigger? Are going to put him in Residential Housing soon? Why is he not potty trained yet?
You are expected to be an expert on Autism from the day the child is diagnosed. What causes autism?, someone will ask. Have you tried the Gluten-free diet yet? What medications do you recommend for autism? What Sensory issues does your child have?
You face a society, that does not know what to do with your child, or even you. An outburst in the local Target store, can bring a drove of Security personal. Neighbors will-and one did, call DMR or, God forbid, DSS to report you, because your child runs into their yard,(even though you are running as fast as you can behind them). People openly stare at your child’s apparent lack of public behavior skills, until you say, quite loudly, “He has Autism, thanks for the concern!”.
So, what HAVE I learned from Autism? That other people can say and act more rudely than my son ever will in public. That no matter what the Doctor ever writes in his Evaluation, my son is still the same little boy he was before I read the report. It’s just a piece of paper. People will always stare, ask dumb questions, and invade our privacy, as if they have a right to.
But, most importantly, I have learned that, a little boy named Mattie has changed me, and my family, for the better. Autism, or not.