Bertucci's

Due to a Groupon that was about to expire, we had dinner last night at Bertucci’s in Palos Hills.




There was no hostess and there was a small crowd of people waiting to check in or be seated. A man who appeared to be an owner or manager finally came over, seeming very frazzled. We were seated within 20 minutes of our arrival. They have a pretty outdoor area, but we weren’t offered the option of sitting out there. It was probably just as well – during our meal, I saw several people come in from outside, holding their bill and looking around as if they had not been attended to for some time. Our server was excellent. She was managing a sizeable station quite well. She asked if she could bring our soup out prior to the appetizer, as they were about to run out and she wanted to make sure we didn’t miss out on the cream of broccoli, which was yummy. I thought that was a nice touch.



I probably would not bring my autistic kids to this restaurant. The tables are close together, very European in style. There are no booths. When we’re out with our kids, we generally like to sit in a booth as “pinning” them in seems to help in avoiding problems when attempting to dine out. It’s an attractive restaurant, but I think the noisiness would also get my kids worked up.  There isn't a kids menu and there's a fee for splitting entrees.



For an appetizer, we had salami, fontinella and olives, tasty combination.



I had the veal piccata. It was a bit cold when received, but it tasted good, the lemon sauce was very nice, even though it could have used some capers. It was good, not great.



My husband had the breaded steak and rapini. He loved it. I tried some of the rapini, which was delicious and perfectly seasoned – cooked and seasoned just the way bitter greens should be prepared.



There was a sign outside that they are looking for servers. I think the problems we encountered were due to understaffing. I’ve also noticed in past experiences that many people redeem Groupons the day before they expire, so it is better to use the Groupon sooner than that date. I would return to Bertucci’s for dinner on a date night or with a group of friends, but most likely not with the kids. Their menu and prices can be seen at www.bertuccis.net.

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The bad news, then the good news

After being questioned in regard to the alleged vandalism incident, it was obvious which neighbor was the complainant. This neighbor is a renter, but is a relative of the owner of the unit, who is very vocal about what awful parents we are and coincidentally works for our village police department.




The detective I spoke to was incredibly rude. He made me feel like I was a murder suspect on a TV show. He stated he “knew I did it” because I obviously cannot handle my special needs children and “snapped.” He basically said if I admitted to something I didn’t do and paid to fix the car, nothing would happen, but if I told the truth and continued to deny I did this, terrible things would happen to me.



My husband and I went to look at the “vandalized” car, which looked like it had been in an accident. My husband and I suspect the car owner may have been in an accident, fled the scene and was now trying to blame the damage to her car on someone else. Frame us into paying for the damage to the car, intimidate us out of the neighborhood, kill two birds with one stone!  All this because one neighbor finds my special needs children annoying!



Finally, something good happened. I received a phone call from our village police chief. He was very nice and apologetic and wanted to get together and talk about the insensitivity of his officers. The meeting was very positive. I brought printouts through links from Autism Speaks that specifically address autism awareness among first responders. We came home with a bag of toys for the kids and a much higher opinion of the village we live in.



Yesterday, May 29th, I received a phone call from a disability rights specialist at the Attorney General’s office. I told her at this time, I did not want to pursue any action against the police officers who treated me poorly, at least right now. We’ll see what happens. What this taught me was that there are still people out there that feel it’s socially acceptable to mistreat special needs families and that we somehow ask for it. I am even more motivated now to spread awareness and provide support for all special needs individuals and their families!

I haven't written on here in quite some time, but due to recent events, I realize I need to.  Please see the below e-mail I sent out last week to various people in authority in the village where I live.  Follow-ups to this story soon.

I am a mother of two children with autism. My younger son suffers from

hyposensory issues and engages in repetitive behaviors such as kicking and

hitting walls, doors and windows. My son’s teachers and therapists have

taught me methods of redirecting him away from the behavior, but at times,

nothing works. I often apologize to my neighbors for this and am always

assured they understand I am doing my best and that the noise is only heard

minimally and does not bother them.

That said, we have had two autism-related wandering incidents that

thankfully were resolved quickly, but have been reprimanded harshly by our

neighbors, who don’t understand how unfortunately common this is with autism

kids, despite the best efforts of autism parents. We have burglar locks and

alarms on the inside of every window and both our doors have triple locks

that require multiple keys.

On Sunday, May 20, 2012, at around 10:00 a.m., I was sorting laundry and

was startled by a knocking on my bedroom window. When I opened the blinds,

there was a police officer standing there who said he needed to come

inside my condominium. He stated he had rung our doorbell several times. I

suffer from hearing damage, so I often do not hear the doorbell. Friends

and family generally call first so I know to listen for it. The officer

stated there had been a noise complaint. (Pursuant to our condo association

bylaws, noise is prohibited only between 10:00 p.m. and 7:00 a.m.) He also

said, “I’ve been out here before, my partner’s been out here before…” which

is incorrect, as this was the first I had ever heard of any noise complaint.

He asked me many irrelevant questions as to my activities and the activities

of my children that day. While he was there, my son started kicking the

patio door. The officer commented, “see, that’s glass, that could be

dangerous.” Really? He said my neighbors did not want to deal with my

child’s noise and that I should move. (Ironically, I found out later the complainant is a renter. 

I'm an owner.)  I replied that our condo had been on

the market for nearly two years, so we were doing our best to leave. After

he left, my children were crying and very upset by his rude, confrontational

behavior and it took me nearly two hours to calm them both down.

My husband was upset and called the police department. They verified this

was the first time any officer had come out to our home, but many noise

complaints had been made via telephone by the same person. They could not

give him the name of the person for obvious privacy reasons.

On Monday, May 21, 2012, at about 6:30 p.m., we were sitting down for

dinner. My husband said he wanted to check our mailbox before we ate. When

he opened the door, there were three officers blocking his way. They

asked if they could come in as they were barging their way into our condo

anyway. They told us there had been an attempted break-in to our building

and alleged vandalism to a car. We were grilled with questions as to our

activities that day (we were both at work most of the day). My husband saw

the garage door in question was open when he left for work at 3:00 a.m. I

saw the garage door in question was open when I left for work at 8:45 a.m.

and the allegedly vandalized car was not in the garage at 8:45 a.m. I was

reprimanded by an officer, “why didn’t you tell your neighbor her garage

door was open?” My husband was not going to knock on someone’s door at 3:00

a.m. and why would I knock on someone’s door when they weren’t home? If the

vandalism occurred in the garage, why did she wait until dinnertime to

report it? Isn’t it possible the vandalism occurred during the day,

wherever she was?

I didn’t see that anyone else in our building was questioned in regard to

the alleged occurrence. Is the autism family automatically suspect of

criminal activity for some reason? I felt harassed and bullied by the

officers and felt violated the way they barged into my home, interrupting a

family dinner.

Bullying of autistic individuals and their families has been prominent in

the news of late. The Chicago Police Department and several suburban police

departments have participated in autism sensitivity programs. I think this

would be in the best interest of this Police Department to avoid future

litigation regarding harassment.

The Music Station

One of the toughest things about bringing an autistic child out in public (or any small child for that matter) is their inability to sit still for a movie or theatrical performance. Music Station is a fairly new business in the space formerly occupied by World Folk Music Company at 1808 West 103rd Street in Beverly. I received a Facebook message from an old friend about bringing my boys to a Yo Gabba Gabba puppet show at Music Station. Usually bringing my boys anywhere from the Beverly Arts Center to the Shedd Aquarium is a fiasco, but I decided to bring my 5-year-old, figuring the $5 adult/$3 child admission wouldn’t be much of a loss if we had to leave after 10 minutes.

What a pleasant surprise! The show was a perfect experience for my son. There was a lot of audience participation – the kids were given big toothbrushes to brush the teeth of the characters, combs to brush their hair, sponges on sticks to give the characters a bath – very sensory. The kids were not forbidden, but encouraged, to run up and down the aisles during the show. There were balloons and beach balls being volleyed around the whole time and no one gave me a dirty look when my son crawled under several seats to get a wayward balloon. The length was perfect, about an hour.

What a relieving and refreshing afternoon! The experience for the price was fantastic. We will be back!

PANDAS: Strep and OCD

One of the most frustrating things about living with autism is dealing with the unknowns. We don’t know for sure why this happened or how this happened to our child. We know of some things that might help, some things that definitely help (like speech therapy and OT), but we have no idea what our child’s future will be like as far as how much they can recover and function in society.

I listened to an interesting episode of The Autism Podcast recently. The guest was Beth Maloney, author of “Saving Sammy.” When Beth’s son was in middle school, he was diagnosed with OCD and later Tourette’s. Sammy was confined to home and faced being institutionalized for life. Sammy, Beth and their family had to deal with the stigma of a mental disorder, much as those of us who deal with autism do. She made a statement that really struck a chord in me. There are as many kids in the U.S. with OCD as there are with diabetes. Something like diabetes, a physical disorder, is treated with sympathy by society, but a mental disorder like OCD, Tourette’s or autism is treated like an embarrassment. This isn’t to say physical disorders do not deserve sympathy, of course they do, but mental disorders deserve the same compassion.

Long story short, Beth was convinced something else was going on in her son’s body. She had a gut feeling. She hounded the doctors to do more tests and it was ultimately found that he had a strep infection. Apparently there’s an OCD-type disorder caused by strep called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep). What I came away with from this podcast was that it’s amazing what parents can uncover through being relentless.

Beth Maloney has appeared on the “Today” show and “Bonnie Hunt.” “Saving Sammy” is up for an Multiple Sclerosis Society Books for Better Life Award.

www.autismpodcast.org

Pica

The definition of pica according to WebMD is “the persistent eating of non-nutritive substances.” Apparently the name comes from a mythical bird that would eat anything. I’ve also read that pica is the Latin word for magpie, also unpleasant, but then so is pica. I never heard of it until my autistic son started eating non-food items.

It started with chewing on his sleeves & collar, then moved on to upholstery, pillows, carpet, towels. We can’t keep any stuffed animals in his room anymore. He also had a cute talking Elmo chair that we had to put in storage. We couldn’t bring him to the park, or outside at all for that matter, because he would try to eat the dirt, sticks, stones, cigarette butts, you name it.

Then the nastiest of all – his poop. At the advice of his neurologist, I stocked up on one-piece pajamas (luckily it was right before Christmas, so they were readily available at most stores). She felt it was related to sensory-seeking behaviors. As soon as he gets home from school, the jammies go on and he stays in jammies as long as he’s home. The doctor’s theory was that if we prevented the behavior in this way, eventually he would forget about it and the habit would be broken.

My son has a wonderful preschool teacher and therapists at school. Through occupational therapy and re-directing the sensory-seeking, he has gotten better in recent months. We can actually bring him outside without incident and occasionally can let him wear his school clothes for the rest of the day, as well as the occasional two-piece jammies!

I’ve read this is common in children with autism, but I’ve yet to meet another child/parent/family who is living with this. It’s such a disturbing thing to live with. Not only is it strange and odd (and gross), there’s the constant worry of intestinal blockage, poisoning – especially in a non-verbal child who cannot tell you where it hurts or even point to where it hurts. I’d love to meet another family who has lived with this to see how they dealt with it. On the bright side, it has gotten better and I always have hope for his future.

Kindergarten Transition

My older son just turned 5 and will officially be aging out of the early childhood program. I have been surprised by how intimidating the kindergarten transition process is.

I’ve developed a mistrust toward the school district, so prior to this process beginning, I read the entire 234-page PDF from the Illinois State Board of Ed entitled, “Educational Rights and Responsibilities: Understanding Special Education in Illinois.” I received this on a CD from our advocate at Easter Seals. I highly recommend it for any special ed parent. There is a wealth of information.

There’s been an ongoing issue with his difficulty functioning within a blended classroom. Our school district does not have self-contained nor blended special ed classrooms starting at the kindergarten level. I’m within my rights to insist he be admitted to a regular kindergarten classroom with a one-on-one aide as well as speech and occupational therapy, but it needs to be determined if this is best or if a private school would be best. There is a co-op available, but I visited this school and found the kindergarten classroom to be lower-functioning than where my son is at. I don’t believe the answer is to lower the bar simply because he has issues.

The initial transition meeting was positive. The team raved about his intellectual capability despite his behavioral issues. The one-on-one aide was working out beautifully and they seemed very encouraging as to the possibility that Sean could perhaps remain at his current school in a regular classroom with an aide and supports.

Then came the IEP this past week. I was informed the “honeymoon phase” is appearing to be over with his aide and his behavior has been poor. I feel his therapists “get” him, but the teacher this year…I don’t think she understands autism spectrum children. She always tells me how cute she thinks he is, yet in this meeting, I got the impression she was blaming or judging him (and indirectly me). I understand he needs to behave and pay attention, but he’s not just being a brat, this is part of his disorder. A common misconception with autism spectrum children is that they’re just rotten brats and people don’t understand that their outbursts are due to sensory issues, frustration, aspects of their medical problem.

I have appointments this week at two private schools that have autism programs. After feeling so dejected following the IEP, all I can do is hope that maybe one of these schools will be a good fit.