The Denver Autism Wheel

Archive for the ‘Help!’ Category

My original idea for this post that I named two weeks ago got reframed in the last few days.  I got a call last week, from Ian’s speech therapist at school.  She always starts voice mails with ‘Everything’s okay!  Just wanted to talk to you about an opportunity for a peer study.  Please call when you can.”  Unfortunately, I was in a two-day meeting.  As always, thank heavens for email.  Sent a note on one of my breaks letting her know I couldn’t chat during school hours that day but that I was able to come by the school the next morning. 

Walking into school I ran into his teacher who had line duty.  She’d asked if I’d talked to his speech therapist about the peer study.  That she’s excited about it if we decide to do it. 

After his diagnosis, one of the first things we did was get Ian in a playgroup run by a psychologist and an occupational therapist.  It was instrumental in helping both Scott and I understand some of Ian’s behavior and triggers.  We eventually pulled him out when his schedule got to be too much for us – before we hired our after-school help. 

We had Ian and Alexa in a great summer camp last summer that was for socially awkward kids – literally teaching them how to play, how to sit at a lunch table and have conversations, how to brainstorm in a group just to name a few.  It was a stupendous experience.  His teachers and everyone who worked with him last year commented on how much he changed over the summer.  We’re definitely signing them up again this summer.

Ian has had a few friends over…as I write that sentence it seems true, yet not.  Because we work. Because our school has no student directory.  Because I only get to about half of the PTCO meetings…(and other excuses I’m not going to even bother to attempt to write) we’re horrible about ensuring Ian gets people over to the house.  It’s one of my red buttons if you can’t tell.  He’s got a great friend this year and he’s only been over a couple of times. 

But this was new avenue…a peer study.  I got the basics from the speech therapist.  Scott and I are intrigued enough that we’re going to go meet with the professor, teacher, speech therapist and school administration next week. 

 Ian, I promise that we’ll get a few more friends over for a get together in next couple of weeks. 

I will continue to post more here as we learn and progress through this.

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No I am not asking about your social network – your Facebook friends, which are definitely important (as soon as I can convince Kate that Facebook is sometimes worthwhile!)

But who is your network of support?  Not only for your child but for you and your family members? 

Just to set the stage of our day-to-day lives:  My husband Scott and I both work full time jobs.  We would love for one of us to be able to stay at home, but that isn’t our reality.  Ian is in 3rd grade this year.  Alexa is in Pre-Kindergarten at a local day care that is awesome.  Scott’s job has no flexibility in it at all – hours that are set in concrete of when he needs to be in the office.  My job, however, is extremely flexible.  I’ve worked long to get there and now that I have it I wouldn’t give it up for even more $$$.

We learned after a very painful Kindergarten and 1st grade year – that we needed HELP:

  • Help with the school and dealing with IEP and special education needs.
  • Help with after school.
  • Help with pre-teaching Ian concepts.
  • Help with social skills.
  • Help with physical activities and many other things. 

We assessed our major issues.  1.  We needed help in advocating with the school.  2.  We needed help with homework after school and pre-teaching him concepts.  3.  We needed help with social skills. 

We’re extremely lucky that we have most of our family nearby.  My parents, Scott’s parents are both here in town.  My brother and his family.  Scott’s sister and her family were here but just moved to TX…we’re still traumatized by that departure and the fact it was to TX but that’s another post. 🙂

My Mother-in-Law is a force of nature.  If I ever get really sick, she would be the person I would turn to regarding health care services.  Figuring out what’s needed, what’s really necessary etc.  She asks questions that most people don’t think to ask – and sometimes we’re all surprised by the answer.  Because of Scott’s work hours, it seemed natural to ask my MIL to help with advocating with the school for special ed services. 

You need professional help too, however.  We knew it would take years to become experts in Special Education Law.  So we found our ARC (Association for Retarded Citizens – links are on the right-hand side under Advocacy) chapter and found Nancy.  Nancy is a professional education advocate through ARC.  It took lots of meetings with Nancy, then with the three of us (Nancy, MIL and myself) with the school but we got what we felt Ian needed in place.

We also decided that Ian was missing out after school – a prime time for him but not for us.  Since we both work, we had him in the after school program at the school.  Ian was one of 50+ kids they had 8 adults trying to take care of and keep safe – which is ultimately their goal.  They do homework at after school, but Ian needed some extra help and extra prodding so it never worked out well for him.  And by the time we were picking him up and trying to do homework it was a nightly game of frustration for all of us. 

So after much internal debate and much financial juggling, we hired a college student to come pick up Duncan after school.  In 2nd grade, it was three days a week.  In 3rd grade, it is every day.  Our college student picks him up when school gets out, brings him home and they do snack, homework and if he’s fast he can get some play time in too before dinner. 

 We found a professional tutor who specialized in working with kids on the spectrum…we focused on three things – ensuring Ian was up to grade level in his areas of strength (math and reading) and work on a plan to get him up to grade level in his areas of weakness (writing). 

Now in 3rd grade, Ian is at grade level across the board.   

It’s not all about school.  Ian needs to work on his social skills too and we’ve got him in Cub Scouts and in a social skills group during the summers.  (Talk more about that in “Socially Speaking” soon.)

We also have other professionals, doctors, therapists (speech, occupational) in our network but we don’t see them as often.  Which I’m happy to say. 

A key person in my network is Kate and other Autie Moms and Dads.  We talk, IM, email, post and chat about the day to day things.  Ask each other questions through posts on boards ‘does your child do this, have you tried that?  Is this “normal” in our world?  My world would be very different if we didn’t have each other in it.    

So what are your goals for your child?  For yourself?  How can your network help??  

I’d been meaning to visit Beau Jo’s Pizza for one of their Autism Society “pizza nights” for some time. We’ve been plugging them on the blog, and it sounded like a really good idea, but Wednesdays can be kind of busy around our house, what with the tutor finishing up at 6PM and then the rest of the night to contend with. But this time, we made it. And what a great night!

First of all, I must express my gratitude to Beau Jo’s for opening their restaurant to “our people.” Autie Mom Julie brought the clan, too, so there were auties and enties at our table, adults on the Spectrum, kids, adult advocates, probably around 50 people or so, all told, during the evening. The food was great, the company was outstanding. And it all came off without a hitch. How many times can you say you’ve brought your kids (autie or typical) to a restaurant and can come away saying that??

 So: good for Beau Jo’s! We had a great time, the kids played, the grown-ups talked. I got to meet some more advocates…it was like regular going out to dinner. 

I know it can’t have been easy, training a wait staff to handle a crowd of people who are susceptible to bright lights, loud noises, crowds, unfamiliar places…but they did it. I hope they will one day show other restaurants the secret of their success, but for today, I just want to say to them: “Thank you for opening your hearts and your space to my family and my extended circle of friends and fellows. Your generosity of spirit and willingness to welcome us in (and back) is much appreciated.”

If you haven’t had the chance to visit Beau Jo’s for their Autism Society Pizza Night, I heartily recommend it. We went to the location at Colorado Blvd and Yale. It’s the first Wednesday of every month, about 5:30-7:30. It’s well worth the trip: fills the tummies and warms the heart.

Posting this by popular demand.

If you’ve decided your child is not in the right school, you probably have a set of expectations that are not being met. The first thing to do is write those down. It sounds simple, but it’s an important step. If you are really serious about moving to a new school (sometimes it means a physical move), you’ll want to make sure you know your metrics before you call the real estate agent.

When I started researching, I knew that one of my main concerns was that Chris’ SpEd staff communicate collaboratively with Karl and me. That sounds warm, fuzzy and vague, so here are my metrics: I wanted SpEd who were willing to meet with us for status meetings, not just for the annual IEP review or parent/teacher conferences. I wanted their email addresses, so I could send them information, ask questions, check progress on a particular task. I wanted IEP goals that were finite and measurable (picture where the bar was set that writing an IEP properly was a criterion).

I wanted a clear line of communication with the administration and the principal. If I walked into the office, I didn’t want to see secretaries scurrying to bar the door. I’m not a battleaxe (honestly, I’m not!) or an unreasonable parent who wants the moon for a child who can’t achieve. I want to put the tools at his disposal: that’s really the goal of education, isn’t it? To provide a child the tools for success and help him or her master them: math, science, literacy, critical thinking, time management, research…the more tools in the toolbox, the better life he or she can build. Principals in particular aren’t just the folks behind the big desk in the office with doors. They are the pulse of the school; they set the tone among the faculty and staff; they decide what kind of face the school presents to the public. If a principal makes time to sit down and talk to a prospective family, that indicates a genuine interest in engaging with the public, not just established families, not just certain people, not just the ones who don’t make waves.

I wanted to see the school involved in the community. What does that mean? That means I see soccer teams practicing on the field after school, it means I see yard signs for Cub Scouts or fundraisers around the neighborhood, it means I still see cars in the parking lot at 5:30 in the afternoon. In a larger context, what it *means* is that the school is a focal point for the surrounding neighborhoods, not just because traffic gets really bad for 15 minutes in the morning and 15 minutes in the afternoon. It’s a part of the consciousness. It’s a place where Scouts and sports teams meet; it’s a place where kids play and where grownups throw Frisbees with their dogs on Saturday afternoons. It’s a welcoming environment that still draws in families that used to have kids attending the school…it really is a neighborhood institution with its own gravitational pull: people want to be there even when they don’t have to be there.

OK, so now I know what I want. Where do I go with that? Start at greatschools.org. You’re not going to find how many yard signs are in the neighborhood there, but you will find reviews from parents and students. CSAP scores are fine, and you want to see that they’re meeting standards, but keep in mind that CSAP measures *minimum* standards, so it should be a HUGE red flag if CSAP scores are low: that means the academic floor at that school is too low. Look at the reviews. Reviewers tend to be honest. You can spot those with an axe to grind because they will stand out from the rest.

Call the school district. Ask to talk to the Director of Special Education (could also be the “manager” or the “district coordinator,” too, but what you want it the person in charge for the school district). See how long it takes to get a call back.

Call a prospective school and make an appointment with the principal and the SpecEd coordinator. Their interaction together and the way they relate to you will be important. See if they give you a tour of the school, and if they do, see if you get to see your child’s prospective classroom(s).

Talk to other parents. Get on those group lists on our Community page and ask: “Who knows about XXX school?” You’d be surprised how forthcoming, honest and helpful parents with kids at that school can be. We have to stick together, after all…

And when you take tours, keep in mind that public schools don’t have to sell you on their value. They are part of the services we pay taxes to support, and with their shrinking budgets, many school districts have had to make difficult decisions, cut staff and add furlough days to their calendars in the past year (and there’s more to come next year). Having more kids to serve doesn’t mean they make more money. Having more kids with IEPs does mean they receive additional funding from the state, but our kids use the funding the school receives, so it’s not like they have a big incentive to roll out the red carpet for us because SpEd kids bring in the big bucks. Specially trained school staff are not cheap, and the good ones are worth their weight in gold.

Having said that, it’s important to acknowledge that getting a school tour is a gesture of good will on the school’s part. Considering the financial pressure schools have been under to keep producing better results with less funding, the academic scrutiny from lawmakers, the performance metrics they have to meet every year that change every year, a lot of really good schools are doing the best they can, and when you do find the one that fits your child’s needs and your expectations, remember that they need your help, too. Find ways to give back to the school (more on that later).

I had a really great conversation this week with Lorri Park at the Colorado Autism Society. We know that we must approach our auties with compassion and no small amount of patience. But she said that our compassion must extend in all directions. We have to include everyone in our capacity to be patient and understanding. This is going to be a bit of a rant, so bear with me.

We must be patient with our auties. We must understand that, just because they view the world through a different set of glasses, their view is no less valid, nor is their desire to connect with it. We must involve them in the world, provide opportunities for interaction, connection, contact. And, yes, compassion for them includes letting them fail sometimes. Chris still doesn’t have a fantastic facility for maintaining conversations. That doesn’t mean I hide him from them. On the contrary, I try to find honest (and sometimes “safe”) forums for him to practice.

We must be patient with ourselves. The families of autistics are often spectacles. That’s just a fact. Autism can make us want to give up human contact ourselves because it can be so darn difficult to enjoy a nice meal in a restaurant when you have to calm somebody who gets anxious and has outbursts in unfamiliar places. What’s the solution? Go out more…not less. Start in safe places, like Beau Jo’s pizza. The Autism Society of Colorado has a Beau Jo’s night the first Wednesday of every month. They expect families with autism. It’s safe, and it’s a way to start making connections (you included) with people in a safe environment. And we must realize that, just because we do what we have to do because this is our beloved child/sibling/spouse, we are not saints, perfect or robots. As much as we love them, we’re not specialists in intervention therapies. We’re parents, siblings, caregivers. We are human. We have a list of people and facilities in the sidebar to the right who can help provide a sanity check. Use them: the Autism Society, the ARC, Club 4 Kids. If you have others and want to share, leave a comment and let us know! It’s OK not to know everything, it’s OK to lose your patience, it’s OK to lose your marbles for a minute or two. No, seriously. Think about what you’re up against. It’s OK. Check out the Gimme a Break program at the Autism Society. Have a movie night while somebody trained in autism respite care watches the kids. I promise, the house will still be standing when you come back. Or bring them to Club 4 Kids (they’ve made it plain to me that they welcome kids on the Spectrum). Let them enjoy a safe evening with other kids while you recenter yourself. It’s OK. Nobody should expect to be able to hold back the floodwaters 24/7/365.

We must be patient with teachers and special ed staff. Think about what they’re up against: increasing class sizes, job insecurity, parents yelling on one side and the principal yelling on the other, low wages, long hours of teaching and planning and grading and conferences and field trips and meetings and ongoing training. Yet somehow, we all remember at least one teacher whose dedication sparked for us the love of a subject we never thought we’d love. They have a gift, a passion to reach out and touch the minds of their students. With shrinking education budgets, they often buy their own paper, chalk and tissues for the classroom (on a teacher’s salary, mind you). They work tremendously hard to make a difference in our kids’ lives.

We must be patient with strangers. We’ve all seen the air quotes around autism. We’ve seen the rolling eyes, heard the indignant humphs and the “why can’t you control your own child?” comments. Yes, it’s shortsighted, thoughtless and inconsiderate, but if you think about it for a minute, how much of their outbursts are just as socially inappropriate, reactionary and fearful as the stuff your child does? They don’t understand, either. There’s still a lot of misunderstanding about autism, what it looks like and what it means. Unfriendly strangers deserve the same patience and understanding we extend to other people. Remember, we must expose people to our kids with autism as much as we must expose our kids with autism to people. We have to get used to each other. The learning opportunities abound (she says, waving her arms). Change is scary, but that doesn’t mean it must be avoided. Everybody has to learn to live together. It’s a small planet.

I can’t believe school starts in a week…sure, you’ve heard that before, and we’re here again. I’m back in preparation mode now that we’re back from vacation. Kate’s posted about her packet. I’ve used it for the last two school years – the first one was pretty much ignored. The second year used, it was highly successful.

What was the difference? The teacher.

The Teacher is the scion of the classroom. They are the person who makes or breaks your child’s experience at the school. When you’ve got a not-so-great-one, you know it. But when you’ve got a good one…it’s as if the skies have parted and the angels are singing. And you never want to go back to the not-so-great ever again.

But you can influence teacher selection only so much…

Here are a few things you can do regardless if you are a working parent or a stay at home parent:

  1.  Autism packet for classroom teacher, specials teachers, any therapies received at school and all paras (paraprofessionals that are the in the classroom to support your kid and any others who need additional help).
  2. If you can, set a meet and greet with teacher, one on one. Come with child, packet and a little bit of time. Your main goal is this: find out how the teacher would prefer to communicate: via email, a phone call once a week or…fill in the blank.
  3. Ask the teacher and anyone else who works with your child how you can help them be successful this year. You might be surprised by the answers.
  4. Talk up school to your child: Why it’s important. Why it’s fun.
  5. Get involved where you can.

I’m trying something new this year. It could be because I’m a control freak. It could be because I’ve realized that we’re too isolated. I’ve joined the PTCO board at our Elementary School. I’ll keep you apprised of how that’s working 🙂

That said, there are so many other things that we’ve had to put in place to make Ian successful at school. With two working parents, it was hard to finish homework when we picked him up from the After School program – which was usually around 5:30 – 6 p.m. We would end up spending an hour or two doing homework. Sometimes it was easy and other times it was a huge struggle. Once that was done, then it was time for bed for Ian.

We knew we were losing vital hours but that the homework program at After School wouldn’t work for Ian. He needed that extra support.

We hired two people. The first one was a tutor who came from the same place we’d been using for a social skills group. She picked him up from  After School two times a week (about an hour and a half after school got out) and worked with him on homework, but a big part of what she did was preteach items, work with him on executive processing skills and just good general school skills. Her hour and a half would be done when one of us got home from work.

The second person was a college student who would pick him up from school directly the other three days a week. She’d work with him on homework, and once he got that done, they’d play. It was about 15-18 hours a week, perfect for someone going to school. We look for someone who’s a natural with Ian.

They don’t have to be Psychology or Special Education students. So far, we’ve had one woman who was studying Dance (who’s started her second degree in Special Education over the summer). Our second is a marketing major just finishing up her last semester. The third, who we hired this summer, is our first Psychology major.

We’ve had to sacrifice to do this. No major vacations (which is hard for two travel buffs); much less eating out and other items that you “want” but don’t “need.”  It has been worth every penny.

Ian is working at grade level academically. He’s much more confident at school. And every night hasn’t been a fight over doing homework. We get some homework and some family time. It is a great place to be and I hope you can find a way there.  Oh yeah, and school starts in a week!  Sigh, summer is over…again.

By now it’s a cliché that the summer’s just flown by, and it’s hard to believe school starts soon. Time for the obligatory trip to the office supply store for pencils, erasers, notebooks and whatnot. If you haven’t had a chance to meet the new teachers, now’s the time! Most schools have a teacher list online, including emails, so take a minute to drop him or her a line and introduce yourself and your child.

Speaking of which, do you have your Autism packet ready? I can hear it now: “My what??” you say…

I created an autism packet that I’ve been using for going on three years. I give it to new teachers and paras to give them a head start on what Chris’ autism looks like, how to have more good days than bad days with him, to introduce Karl and me. It’s a set of explanations that I hope answers a lot of the common questions new teachers might have about having a child with autism in the classroom for the year. I’m attaching it here. It’s a Word Doc, and I’ve inserted some fields for your child’s name, your name, contact numbers and other bureaucracy. Feel free to use or modify for any specifics you think your child’s teacher should know going into the new school year!

An Autism Packet


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