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.

Mall of America - Bloomington, Minnesota

We took a last-minute family mini-vacation to Minnesota. The main purpose of the trip was to see the Mall of America and its Nickelodeon theme park.

The flight from Chicago to Minneapolis-St. Paul is about 51 minutes, nice and short for my 4-year-old and 3-year-old, who are both autism spectrum on top of being preschoolers. My 4-year-old could have spent the whole day just at the airport. He loved watching the planes through the window and running up and down the lines of seats in empty gate areas.

We booked a one-bedroom suite at the Country Inn & Suites across the street from the mall. It wasn't that expensive ($95 with tax on hotels.com) and that bit of extra personal space made all the difference. The couch in the main room pulled out into a bed for the kids and they had their own TV in that main room. My husband and I had our own TV in the separate bedroom. There was a microwave and refrigerator in the space between the two rooms. We were close enough to look in on the kids and close enough for them to get us quickly if they needed us, yet the extra space kept us from getting on each other's nerves, as we normally do in a standard two-queen-bed room.

The staff at Country Inn & Suites were exceptional. We arrived a few hours prior to check-in time and asked the front desk clerk if we could leave our bags somewhere until check-in and he let us check into our room early. They have a complimentary breakfast buffet that was good with just enough variety. The exercise room is small, but I was able to get on an elliptical machine in the morning without waiting my turn.

Country Inn & Suites offers a complimentary shuttle to and from the airport, as well as to and from the Mall of America. I found the latter to be odd since the hotel is across the street from the Mall, but upon arriving, I saw how complicated it is to get to the main entrance, so the shuttle was handy. I believe in the summer months it would be fine to walk to the mall, but in January, I appreciated the shuttle. The mall shuttle leaves the hotel at the top of each hour. The airport shuttle needs to be scheduled in advance.

The mall is huge. The stores were pretty much all the stores you can go to in Chicago, except all in one spot. The one downside of the mall are the kiosk vendors. They are very aggressive and if you try to ignore them, they shout insults after you! I've encountered aggressive kiosk vendors at Orland Square Mall in Illinois, but this was ridiculous.

I would not recommend the Nickelodeon store. We forgot to bring a sippie for my 3-year-old and had to buy a cheap plastic one there for $10. I saw items in the store that I had previously seen at Walmart, Target and Kmart over the holidays for much cheaper. If you're looking for a collector's item that is only available at Mall of America, I would only recommend it then.

The Nickelodeon theme park was very cute. The whole way on the plane I kept telling my 4-year-old that we were bringing him to see Sponge Bob, Dora, Diego and the Backyardigans. He was incredulous when he saw this was true! I liked the fact that there is not a standard admission price for the whole day. Some of the rides are for bigger kids and some rides are not appropriate for kids with sensory issues. There's a vending machine where you can buy “points.” Each ride costs so many points. Another nice feature is that parents are not charged points if you go on the ride with your child.

On the lower level of the mall, there is an aquarium. With your admission, you get a bracelet that grants you access to the aquarium for the day. We went through twice, the kids loved it. There's a glass tunnel you go through where the sharks, turtles, etc. are above you, on either side of you, all around. The Atlantis resort on Paradise Island in the Bahamas has something similar. There's also an area where children can touch starfish and other creatures. My 3-year-old almost killed a starfish and my 4-year-old splashed water all over the place, but the staff were very nice and it was a good sensory experience for the kids.

That night, we ordered room service which is off the menu and delivered from the TGI Friday's in the building. Our meal came in 15 minutes and we fed 4 people for about $35, including tax and tip. The convenience and the kid-friendly menu were worth it. There's also an IHOP in the building with many meals under $5.

Our experience with Country Inn & Suites was so positive I became a Gold Points Plus member upon check-out and was able to get points for this particular stay.

All in all, Minnesota proved to be a good close-to-home family getaway. We'll be coming back!

Biting

Received a call from the acting principal of my 3-year-old's school today.  Todd bit a substitute teacher through her jeans and broke the skin because he wasn't getting what he wanted. About 2 weeks ago, the same thing happened where Todd bit his cousin because she was preventing him from doing something he wasn't supposed to be doing.  He never bites myself, my husband or his brother aggressively, or at all, for that matter.

This is an unfortunate aspect of autism.  Sometimes autistic kids bite for a reaction, if they are overwhelmed, on sensory overload, or are unable to communicate another way. Todd is non-verbal.  It's often hard to tell if he understands what's being communicated to him.

When the principal called, he asked my husband "is something going on at home." I know that's a standard question for school administration to ask parents, but it implies the incident must be our fault.  I understand aggressive behavior is inappropriate and must be addressed.  I understand schools need to report significant incidents to parents.

I was called to meet with the IEP team.  It appears we're all on the same page and through behavioral analysis and occupational therapy, hopefully the aggressive behavior can be avoided in the future.

Easter Seals - an autism parent's best friend

Easter Seals has been a godsend of a resource for me ever since my older son's speech delay became apparent in 2007.

I initially contacted our local site and an evaluation was set up to take place in our home. Speech therapy, developmental therapy and occupational therapy were then arranged to take place in our home, at our convenience. They helped set up hearing and vision evaluations, as well as an appointment with a neurologist, who diagnosed him with PDD, or pervasive developmental disorder. (My family physician brother tells me this is a catch-all diagnosis when it's apparent that something is wrong, but the child doesn't exhibit enough symptoms of any one specific disorder to justify a diagnosis of autism, Asperger's, etc.)

When my younger son showed signs of speech delay at 18 months, I immediately called Easter Seals to have him evaluated. Our Easter Seals social worker arranged for him to be seen by one of the country's best pediatric neurologists at University of Illinois-Chicago, who diagnosed him with autism.

The therapies for both boys continued in our home until they each turned 3. Our therapists and Easter Seals advocate assisted with the transition to our local school district preschool.

We recently were informed by our school district (District 126 in Cook County, Illinois) that there is no self-contained special ed at the kindergarten level (my oldest is about to turn 5) and it was strongly suggested that both my boys attend a co-op in Midlothian, Illinois, effective as soon as possible. I was told I could see the school prior to my children attending. I was appalled at what I was shown. I was shown a kindergarten classroom with much lower-functioning children. (It was never explained to me why my preschooler would need to leave the special ed classroom in our neighborhood.) I understand my son has issues that need to be addressed, but where would the intellectual challenges be for his strengths? In tears, I called Easter Seals that day. Our social worker was more than happy to help me. She told me about several websites, most importantly one that shows the legal rights of special ed parents. A few weeks later I also heard from a parents' advocate from Easter Seals who gave me a wealth information over the phone, then sent me even more information through the mail.

I now have appointments in early March to look at some private schools that may be appropriate for my sons to attend. I requested a one-on-one aide for my 4-year-old for this semester and the special ed assistant director raved to me how much that is helping my son pay attention in class. (Side note: So why did it have to be my idea? It's sad it's all about the budget.) I also have the option to keep my 4-year-old at his current school once he becomes kindergarten age (5) with a one-on-one aide. I was never informed of these options until I got upset. Why does it have to come to that?

The most important bit of wisdom passed on to me from the parents' advocate at Easter Seals was this: It is the job of your doctor, therapists, social worker to look out for the best interests of your child. It's the school administration's job to look out for the best interests of their budget, so keep that in mind when suggestions are being made.