Wednesday, March 20, 2013

The Not-So Scary Pre-K IEP Meeting

The day I have been dreading for the past two and a half years came last week: the dreaded Pre-K IEP meeting. I have never heard of one positive IEP meeting. There are whole threads of warnings to bring an advocate and not to sign it if we were concerned about the terms of the IEP. There are tons of horror stories on Facebook. Before Matthew was born I ran a school clinic, so I was on the other side of the table in these meetings. Now I am a mom to a little guy who has a very specific set of needs. How would I know if I made the right decisions for Matthew? What if I accepted the terms and I should have asked for more services?

A week before the placement meeting, I took Matthew in for an evaluation with his Vision Impairment teacher, a Deaf/Hard of Hearing specialist, a physical therapist, an occupational therapist, a speech therapist and a placement specialist. We went over his entire birth and health history--super easy with the cheat sheets I have made up listing diagnoses, medications, doctors, and his allergies. While we were talking Matthew was in his wheelchair flirting and jabbering with all the ladies in the room and batting at the toys they put in front of him trying to gauge his actions and responses. My take on these evaluations is that you want your kid to show what they can and cannot do so that they qualify for school based services, but not do it so well that they get less services or no services at all. If I'm wrong, that's just my impression.

In the end he knocked their socks off. He was happy for the most part, but did get to see a tiny taste of one of his meltdowns. He smiled and palmed and batted at toys. He played with some of his OT apps on his iPad. He rolled around on an exercise mat on the floor for the physical therapist. He even mimicked sounds to his vision impairment teacher for the first time ever. They took their piles of notes and said that we could reconvene in a week to decide where he would be going to school.

I was so nervous the morning of the placement meeting, I told Joe the wrong time and we showed up an hour early. We sat there playing blocks with Matthew while other parents and kids came and went, all the while waiting to determine Matthew's fate. We had been told there were two possible schools that could accommodate his level of needs: one about 20 minutes from home, the other over an hour away. We have refused bus transportation so I will be driving him and picking him up from his half day sessions.There was no doubt we wanted the closer school. Even more than that, after our last school experience, I wanted a place that I could trust with Matthew. The closer school has a few more pluses going for it, Joe is on good terms with the assistant Principal because his kids used to go to Joe's after school program. Also, Matthew's deaf/hard of hearing instructor goes there to work with kids once a week, so I know she would watch out for him.

We went over everything we had talked about in the evaluation and they gave us their recommendations for services. He was approved for vision services once a week for 30 minutes, deaf/hard of hearing services once a week for 30 minutes, language services twice a week for 30 minutes a session, occupational and physical therapy services twice a week for 30 minutes a session. Best of all we got the school we were hoping to get and Matthew will be able to attend the morning session so that we can keep our outside therapies going.

Was this a good meeting? Could we have gotten more services? I don't know. I do know this was more than he was getting at his previous school and I have been trying my best to do at home since he left the other school in January.  I am feeling a little more at ease at sending him back to school after Spring Break. All I can do at this point is have faith and stay involved.

Sunday, March 3, 2013

At A Loss for Words...But Not Anymore

Saturday morning I couldn't wait to get out the house. I have been sick with the flu and then bronchitis for three weeks and on a ton of meds. I have not left the house except for Matthew's therapy appointments, preschool evaluation and side trips to Wal-Mart to restock on tissues, tea and Mucinex. To say I had a serious case of cabin fever would be an understatement.

A certain little boy will be turning three in the next couple of weeks and I am so behind on party planning and shopping. Armed with my always present list, we were off to our local mall to tackle the hardest item--buying Matthew's birthday gift. I was a girl on a mission.

The trip was pretty much a bust so we decided to leave and shop for the party supplies instead. Matthew was having a great day out--he was smiling, looking around and baby babbling away. All was right in our little world.

When walking through the food court to our exit, a kiosk worker stepped out and attempted to lure us over to check out the toy he was selling. I politely told him no thanks and kept pushing Matt toward the exit. He stepped out and blocked the path where I was pushing Matthew's wheelchair and dropped this bomb on me:

"Come on lady, your kid is autistic and you won't even let him look at my stuff?"

I froze stiff. Did I just hear him say what I thought he said?  Was he implying I was a bad mother? When in the world did it become acceptable to target a disabled person as a sales pitch?

I spun around and looked him, ready to lose it big time, all while Joe was pulling me by the arm to the car. The only thing I could get out of my mouth was to keep asking if he really said what I thought he said. I think he was equally in shock. He has heard me complain before about how people treat those with disabilities, adults always being far worse than kids. I am used to people staring at Matthew, usually I just stare back. I have never experienced such coldness and horrible treatment as this. Joe got Matthew and I into the car and went back into the mall and filed a complaint with guest services and requested a follow up call to find out what steps will be taken in disciplining this person. I will write a follow up post about what comes next.

I came home, still in shock, and posted the encounter on my private Facebook for family and friends. Not really surprising, the responses ranged from outrage, those who wanted to pay the guy a visit to show him what they thought he could do with his comments and generally a lot of love for Matthew. What was surprising to me were the amount of comments telling me to just ignore what happened and comments like that. Well, that isn't going to happen. I'm only getting started in finding my voice in advocating for Matthew.

**As of 3/5 we have received a phone call from the owner of the kiosk, who received our 
  complaint from the mall manager. She apologized profusely and stated that he will be
  removed from his position. We didn't ask for his dismissal, it was the owner's decision.