Archive for the ‘special needs children’ Category

Our New Math   1 comment

Monthly Master’s Conservatory tuition for two= $90

Gas money for a season of driving to practice and tech week(s) =not sure but maybe a couple hundred

Costume rental= $75

Odds and ends from Amazon to add to costumes= $30

Time compiling costume components= 10 hours

Time spent ironing costume components= 1 hour

Time kids spent at rehearsal between May 15 and May 29=
50 hours

Time mom and kids spent in the car or carpooling last two weeks= 12 hours

Free time for kids during two tech weeks= a few hours each morning

Free time for mom during two tech weeks= free time?

Last minute costume changes and additional details= at least five

Tech week meltdowns= one

Seeing my husband not recognize his own son for a few seconds after he appeared on stage. Make-up and costume can do wonders= magical.

Watching the story of Beauty and the Beast brought to life= magical. Don’t need any CG here, people.

Seeing my 13-year-old son and 16-year-old daughter waltzing with each other in “Human Again”= priceless

Tech week meltdown defused by older sister with experience, advice and hugs= priceless

Over months of practice, observing my daughter make peace with the role she was given, make it her own, and make it amazing= priceless

Seeing my gentle, peaceful daughter doing all her own stunts as the enchantress, a silly girl and the wolf who leaps on Belle= priceless

Hearing my 13-year-old son on the autism spectrum “put on” the bad guy and dance and sing his very own musical lines as Monsieur D’Arque= totally and completely priceless

A Compliment About my Son with Asperger’s   Leave a comment

Someone gave feedback about something creative my child did.  It was positive.

I hope she didn’t notice my jaw hitting the floor.

In the past, what my son has had to contribute to group situations has been aggravation and argumentation.  I really don’t expect any positive feedback when we go out and about.

So when she said in response to something he did, “I love that.  What a great kid,” it completely made my day.

We were at a STEM class at a local science venue, and the students were supposed to be looking at various types of rock.  It was a class in earth systems and one of the topics was the varying density of different types of rocks.  We had spent some time examining different specimens and having fun identifying them, but my eleven year old wasn’t particularly interested in submerging rocks into water, measuring how much displacement occurs, and calculating density based on that information.

He’s more into space and things that involve explosions.

So I wasn’t surprised, but just chuckled to myself, when he picked up not one, but two of the hand-held magnifiers we were supposed to be using for examining specimens and started running around the room with them on his face like bug eyes.

What was refreshing was the way someone else’s kid picked them up and had fun doing the same.

And how low key the lesson facilitator was about redirecting them.

And then the positive comment from another parent.

I’m so glad she took the time to mention it.

Posted November 19, 2015 by swanatbagend in autism, special needs children

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That’s What Friends Do   1 comment

We’ve really never done trick or treating.  We live in the country and never get trick or treaters, and being homeschooled we aren’t in the mainstream where other kids are talking about costumes and candy all the time.  Plus, I really did not want to get into it with my youngest being extremely susceptible to the effects of food coloring, high fructose corn syrup and too much sugar!

Not to mention the work of creating costumes–blah.

However, this year friends asked us to join them at Ridgecrest Avenue to see the amazing decorations, and my son had been doing much better dealing with the ingestion of sweets.  Despite his general dislike of being around people he doesn’t know, the draw of cool decorations and candy was too appealing–so I told the kids if they were entirely responsible for their own costumes, they could go. I would drive them there and walk up and down with them to see the sights and mingle with the throng.

Large crowds, uncontrolled situations, and Halloween have never been my cup of tea, so this was definitely putting myself out there.

The night of Halloween all started off well.  The kids had their costumes taken care of and when we arrived in the neighborhood we had no trouble finding a parking place. Waiting for our friends to arrive, those who were already there talked and laughed.

Once all gathered, smallers corralled in strollers, we made our way to the desired thoroughfare.

It was jammed with people.

So far so good–but then my son discovered the classic problem with a ghost costume (one that I had not thought to check for, since after all, the costumes were not my problem): eye hole size creates visibility problems.

Avoided a face plant but he did fall down when he tripped over sidewalk stairs he couldn’t see.

He’s back at my side after getting the candy, and somewhat tearfully says, “I think I’m done, Mom. I can’t do this.”

Internally I’m sighing and cringing, thinking, “Please Lord, let my child on the autism spectrum have a normal, positive, standard childhood experience,” while not at all sure there is a way for that to happen.

However, I have an idea that we can hold the sheet back so the eye holes are easier to see out of, with the same masking tape that has already repaired a shattered sword for one of our friends.

And, friends to the rescue.   Mom of six has, among other things, scissors and a safety pin with her…thank you Lord.

I tell my son, “I have an idea for how to modify your costume, so you can see out better.  Can I try that?”

“OK,” he accedes, and I pull the sheet off briskly, and proceed to cut the eye holes larger.  My son is ill at ease at first, as he notices that he is delaying his sister and four other children.

But, thank you Lord again, my friend tells him, “It’s all right; this is no problem.  They’ll wait for you.  That’s what friends do.”

Eye holes widened, the costume is re-applied to his head, and we safety pin it back.

“How does that seem?”


“You want to try it?  I’ll be right behind you to start out with.”

Off he goes, reassured, with his sister and friends.

They walked the entire circuit, up Ridgecrest and all the way back, and my son kept his ghost costume on until maybe the last 1/5th of the journey.  He had a wonderful time, collected a delightful amount of candy, and was so pleased with his experience and all the creepy or funny decorations.

Who knew something so blessed, friendship, could shine so brightly on a dark night?

Why Special Needs Childrens’ Parents Need to be able to Serve   3 comments

Odd title–I know.  Why would I need to convince anyone the parents of special needs children need one more thing to do?

Another question: why does the average person serve?

There are any number of ways and places to serve.  One of the most common is at one’s church or place of worship.  Often, churches are either in need of people to volunteer or the whole body is structured so that laypeople are essential.  I don’t know of any church that can operate without greeters, ushers, nursery workers and the like.  Most churches routinely ask–nay sometimes beg–their members and regular attenders to step up and serve the body.

So churches need the help.

And, most people want to help.  They want to do something that’s not for themselves.  They want to be part of a movement that’s making a difference in other people’s lives. They want to know they’re serving God and not just staying in their own little selfish worlds.

Even though special needs parents have plenty to do already…they want those things too.

They want to contribute to the wider world, so that their lives include more than doctor appointments, therapies, homework, medication dosing, travel to specialists, cooking and preparing special food, research on their child’s health situation, and the like.

They want to spend time with other people, serving together, for the joy in that and the opportunity to develop friendships.

They want to feel that they are known and valued in their church family.

They desperately need inclusion.  By nature of their family’s differences, they are already sidelined from the mainstream of whatever is going on in the body.

Among the many things churches can do to extend love to special needs families is to make it possible for the parents to volunteer.

I’m not saying that all parents of kids with disabilities must or should be volunteering.  Maybe it’s truly just not the right time.

But what I am saying is remove any obstacles and roadblocks.

Value the contribution the person can make, even if it is not one that is easy to see.  Value the sacrifice the family makes and the other parent (assuming there is one) makes just so the volunteer can play in the band or be a part of the hospitality team.  That parent is already serving his child with a disability, so adding something extra in is a big deal.

Be aware that these parents may not be able to serve in the ways you are asking them to.  They may not be able to commit to two Sundays per month.  You may think that is a reasonable commitment to ask of any person, maybe because the particular job is not that labor intensive.  But what about the work the person does just to get to the church, all the re-shuffling that went on at home to make their service happen?  What if they can only manage to serve once a month?  Or less?  Must they be excluded from serving?

Perhaps if some ministries have regular guidelines for service that the family cannot follow, it would make sense to have other ministries that could accommodate the need for flexible schedules or less frequent service.

Perhaps the leader of a ministry could meet with the parent to brainstorm about how they can contribute while taking into account their other life variables.

Not everyone is not serving just because they’re too busy to bother.  There can be many reasons why people cannot serve as requested.

Here’s one you can help dismantle.