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Autism and restoring a mom’s trust in public schools

Thursday, November 4th, 2010

I’m afraid to believe that my son’s 4th grade in his new school is going so well. Connor is in a gen ed class 93% of the time; he is making As and Bs (albeit with modified programs for reading and writing); he even participated in an after-school creative writing class with 12 other students without his para. His teachers are great, and they understand that despite his language delays, he is a very bright little boy who can handle high expectations if given the chance. The kids at the school are also wonderful, and Connor has made three new friends. The administrators and the special ed team are outstanding. I take Connor to school, so I don’t worry about bullying on the bus (if there would be any – this seems to be a very nice bunch of kids, perhaps due in part to the school administrators’ emphasis on character education and zero tolerance for bullying).

So what am I so $%@! afraid of?

The simple answer is that I’m afraid to trust that everything really is going so well. So I find myself over-reacting to the tiniest things – Connor got a D on his math test yesterday (Is he falling behind?); Connor had a tantrum at the end of the school day (Oh no! That hasn’t happened in ages–do we need to bring in a specialist? Are the other kids being mean to him? Will the teachers label him as a trouble-maker?). And then, I find myself emailing the teacher and resource manager every day and googling every single person in the school to check up on their qualifications and to make sure they don’t have a criminal record.

Honestly, I’m wound so tight that I could give a woodpecker a headache. Even I am embarrassed by my behavior.

I can’t say my fears are completely unwarranted. When my child was strapped into a chair in pres-school or when he was left languishing in 100 degree heat during ’special ed’ summer school or when his his present level of performance was deliberately understated to keep him under the Phase II label (even though he was never in a Phase II classroom)…it put a scar on my very soul…and goodness only knows what harm it did to my son. So, I kinda feel justified for being so hyper-vigilant …especially since almost all of our issues occurred with the people who were supposed to be helping him – his special education team!

So, I am forcing myself to let up a little, to see what happens this year, and above all, to learn to trust in the much-maligned, but more-often-heroic public school system. It takes time and effort to let go of that suspicion, distrust and unhealthy paranoia. But I’m working on it, and am taking a little bit of time to work on me. Maybe I’ll even get a new haircut, start exercising, and reach out to old friends..wouldn’t that be something different!

Tags: autism education, autism public school education, autism special education
Posted in Advocacy, Education, Family Support, General Parenting, Uncategorized | 3 Comments »

Autism Ups and Downs: When Parents Lose Their Way

Monday, September 20th, 2010

Losing our way as parents happens. Typically, it begins with the nagging doubt that we aren’t doing something quite right, but we cannot for the life of us figure out what it is. Sometimes the realization is a false alarm generated by other stressors in our lives. Other times, the doubt is based in reality, but the underlying issue is easily identified and corrected by advice from other parents, professionals or the ever-helpful Google search engine.

But other times, we parents do come to a point where we don’t know what to do, and all of the advice, research and theory just won’t cut it. We need hands-on training.

That’s where Steve and I are now, and that’s when I know it’s time to call in the in-home parent trainer.

I do not like in-home parent trainers. I don’t dislike them; they just scare me with their common sense and practicality. In fact, it’s always been my experience that our parent training is similar to the “Nanny” TV shows (except there aren’t any cameras, thank goodness). In those programs, the trainer patiently and quietly observes the family as they go through their day-today routines. The trainer then comes back to reveal parenting errors that were obvious to everyone watching, except the oblivious parents.

We know, we’ve been clueless parents, too. Some suggestions that we’ve fielded from our trainers are: ”Connor might walk better if you’d let his feet hit the ground once in awhile.” (We were carrying him too much) or “So what do you think he’s feeling right now?” (Reinforcing the idea that Connor has the right to provide input into his own care and treatment options).

So as painful as it can be, in-home parent education is well worth the time, trouble and less-than-flattering view of ourselves as parents. But I dread it, even as nice as the trainers are, and even though the cost is covered by the State.

But wouldn’t it be even nicer if we had access to parent training on a continuous basis? I, for one, believe that the Parents as Teachers/First Steps parent education we enjoyed when Connor was an infant should extend through at least middle school. In Missouri, the Parents as Teachers training program ends when the child begins pre-school. The trainers, usually ex-teachers who prefer to work part-time, show up at the parent’s doorstep every month or so to check on the child’s progress and to give parents useful and fun activities to assist his/her development. Now that Connor is 9, and is officially in the ‘tween’ stage, we could use that help now.

Tags: Advocacy, autism, autism advisors, autism caregivers, autism parenting, Education, family, parenting, parenting a child with autism, special education
Posted in Advocacy, General Parenting | No Comments »

Autism and the Hobgoblin of Comparisons

Wednesday, July 7th, 2010

‘Comparison, a great teacher told me, is the cardinal sin of modern life. It traps us in a game we can’t win. Once we define ourselves in terms of others we lose the freedom to shape our own lives.’ Jim Collins, Author ‘Built to Last’

Comparisons are my weakness. I compare everything and everyone. I compare my son to his typically developing peers, his high-achieving cousins and other children on the autism spectrum. What am I looking for? Any clue to demonstrate that “Our son is making progress” or “Connor is rapidly closing the achievement gap.” Of course Connor is making progress! Every day and in every way he learns something new, just like everyone else. How silly I am to think like this, and yet my heart sinks to my toes when I see a group of children talking comfortably with each other as though they were already adults or throwing a baseball back and forth with ease. I also compare myself to other parents. What might I be missing? A new therapy? A new therapist, school or doctor? A new diet? Am I spending enough time with Connor? Do I have the right balance of focusing on his strengths and interests while working on/making accommodations for the areas that are most difficult for him?

Another comparison I frequently engage in is to search for things not to do. Much of this is also rooted in my own insecurity, such as “There is no way I’m going to act like that with my kid. Those are really bad parents who didn’t even care to get their child the help she needed, and now she’s a mess.” Really, who am I to judge?

Most of the time, I stay fairly level -headed, but a little self-doubting part of me wonders if there is more I could be doing to help prepare Connor for adulthood, and how to avoid the problems I’ve witnessed with other families who deal with drugs, alcoholism, neglect or abdication of their roles as parents. The specter of those children who grow up without having good choices haunts me. But comparison is much easier than the very difficult task of figuring out precisely what my child needs and how to balance those interventions with the same [and very real] quality of life and acceptance issues that our society- schools, law enforcement, employers - need to overcome on behalf of the thousands of individuals with autism…including my son.

Posted in Advocacy, General Parenting, Uncategorized | No Comments »

Goodbye, Mrs. Barnes. We’ll never forget all the good that you’ve done for our son.

Tuesday, June 1st, 2010

I was standing in the jewelry store during the last day of the school year, when the salesperson asked me politely, “May I help you?” I answered, “I am looking for a special gift for a special teacher, and it can’t be too fancy or she won’t accept it.” And then I burst into tears.

How could I possibly thank the woman who had been my son’s aide and academic lifeline for the past four years? How could a necklace or a locket or a cameo pin ever express our gratitude for her sweet and loving attention? Mrs. Barnes always seemed to know when to help Connor and when to fade back. She had the respect of both her general education peers and school administrators.

But most of all, she believed in our son.

She fought with us to have Connor spend 90% of his time in a gen ed class. She knew that with a little 1-to-1 tutoring he could participate in the same testing as his academic peers. She saw his gifts instead of his delays. She helped him course-correct when he was off-track, off-kilter or off-and-running in full-blown meltdown mode. She also encouraged him to give school his best effort, and she listened to what he had to say instead of telling him what to do.

And now that Connor will be going into fourth grade next year, she realized that it was important to break the bond that they had shared for so long. It was time. With tears in her eyes, she said, ” I can’t imagine my life without him. I love him so much, but it is time for him to move on.” And we agreed.

But it will never be the same without her. Thank you, thank you, thank you.

We wish you health, happiness and most of all, the opportunity for her to help yet another special little boy or girl the way she has helped ours.

Posted in Education, General Parenting | 1 Comment »

Autism and the Many Kindnesses of Others

Monday, March 22nd, 2010

We have become alarmingly accustomed to hearing the awful news about the mean and rotten things – bullying, discrimination and other abuses – that happen to autistic children. Yet, we don’t often talk about the many kindnesses – some big and some small – that go unrecognized and occur every single day in our children’s lives. Here are a few of my favorites:

- The school nurse. When Connor spilled something on his pants, he was taken to the nurse’s office for a temporary pair. Of course, the only thing that suited him were a pair of girls’ leggings. The nurse called me to tell me that she allowed Connor to wear girls’ clothing, not out of punishment, but because those were the ones he preferred. Connor has a lot of tactile sensory issues, so I wasn’t the least surprised that he would prefer soft, knitted pants. As it turned out, the girls’ leggings were gray in color and looked like sweatpants on our skinny little son, so it wasn’t at all as I had imagined — that my son was walking around his school in pink tights!

- Connor’s para. What an angel. She’s been with Connor for four years now, and understands him probably better than anyone, Steve and I included. There are far too many of her kindnesses to mention here, but the one thing that really touched us was how hard she worked with Connor to make sure he could perform with his classmates at his school concert. There were at least five new songs to learn, and many pauses and transitions within the skit-based program. In St. Louis, paras are not paid for after-school work, but she came to the concert to see how he did and to cheer him on. Of course Connor stood on the second row, hopped up and down on the riser (very cute, actually) and kept up with all of the other students.

- The lady on the rental car bus. We had just disembarked from a long flight, and were sitting on a crowed bus going to the rental car counter. Connor was having a very hard time, and I was fighting for patience. The woman sitting next to me leaned over to me and said, “I have been listening to people say that autism is a gift, and I would tend to agree with them. Still, it must be hard as a parent to reconcile those unique gifts with the parenting responsibility of overcoming a child’s social and sensory challenges.” Instantly, I became re-centered and balanced. I’m still not sure how she know Connor had autism, but her words were at once comforting and directive. Perhaps it’s no small wonder that this lady was also a Minister.

There are many stories like these, but I didn’t want to dilute their impact by writing too many at one time, so more to follow…and please feel free to send some of your own.

Tags: autism and kindness of others
Posted in Advocacy, Education, General Parenting | 1 Comment »

Autism and the Search for the Perfect Valentine

Friday, February 12th, 2010

It was time to prepare for the big third grade ‘Friendship Party.’ a nice euphemism for the elementary school version of the Valentine’s Day card/candy exchange. We only had a mere two days to go before the big event. So, having a half an hour to spare between the after-school pick-up and an important call with my agent, I decided to take Connor to the local pharmacy to look for the perfect classroom Valentine.

We started in the candy section. I pointed to some chocolate candy hearts. “How about these, Connor?” I asked.

“No. Those are not healthy,” said Connor.

Okay, no problem.

We continued along the candy aisle. “How about these candy-filled bags with hearts on the outside?” I suggested hopefully, looking at my watch and noticing that time was running short. Connor shook his head. And suggestion after suggestion, the answer was the same –no, no, no! We were both beginning to get frustrated. I had to get home for my call.

After another half an hour, we both had had it. Connor had begun to cry, and I was seething. I said, “Connor what DO you want in the perfect Valentine?”

He responded quite emphatically, ” I DON’T WANT TO SHOCK PEOPLE!”

Thinking that he didn’t want to give a Valentine that might cause him to be teased, I took him home and asked him to think about it.

Later that evening, while I was rummaging through his backpack, I found a note advising parents not to include any Valentine’s gifts with peanuts because there was a student in his class with severe peanut allergies. At last I understood what Connor was trying to tell me. Connor didn’t want to buy candy that had peanuts or was made in a factory that made peanut products — those could cause his classmate to go into anaphylactic ’shock.’

The next morning before school, we went to our local big-box discount store, and found Valentine’s Day cards and some lovely Valentine’s themed lollipops that were made in a peanut-free factory. Good job, Connor.

(Who says that children with autism are not considerate of others??!!! )

Happy Valentines Day, everyone!

Tags: autism and valentines, valentines day
Posted in Education, General Parenting | 1 Comment »

Autism and Sleeping through the Night

Tuesday, January 26th, 2010

My son slept through the night last night…in his own bed. He also slept in his own bed the night before and the night before that and a whole six nights before that. That’s now TEN nights in a row that Connor has slept in his own bed. At eight and a half years old, he is finally sleeping on his own. How did we pull it off? I have no idea.

It isn’t as though we haven’t been trying for the past eight years or so. On the contrary, we’ve attempted just about every sleeping technique with Connor (but please let let me know if I missed anything): letting him cry it out, medication, bed time routines, sleeping beside him, fairy lights, bedside lamps, sleeping on the floor, story time, snack time, sleeping in the hallway, special pillows, a new bed, weighted blankets, special superhero pajamas, sleeping in a tent, threats, tears, sleeping in a chair and bribes. Finally, a kindly social worker told us, “Forget it for now. Let him sleep with one of you. All of you need your sleep, too.”

That was four years ago, and since then, Connor has been sleeping with either my husband or me (usually my husband, because I tend to make rather loud sleepy noises). And so, Steve and I became used to little feet at our backs, in our sides and occasionally in an ear. We have hugged the three inches of mattress left over from our little one’s creeping snuggle-attempts and have shivered in the cold when our special someone has decided to monopolize the blankets.

But we always kept offering, “Connor, would you like to sleep in your own bed this evening?” And ten nights ago, he finally said YES. And he hasn’t changed his mind so far.

One of the greatest parenting mysteries of all times is when to push and when to let a child develop on his own. I wish I knew the answer, but thank goodness Connor has appeared to have figured this one out by himself.

Posted in General Parenting, Sleep | 8 Comments »

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