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.

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. 

Trust Issues

I have been off the writing grid since early January. I have popped in from time to time to check comments and reply, but my heart hasn't been into writing.  I have been feeling pretty low and not really sure what to write. So, here it goes:

Shortly after my last post, we decided to take Matt out of  his Early Intervention charter preschool permanently. This was not a rash decision and everyone who initially questioned our decision now agrees we did the right thing. I know we did the right thing.

We should have taken him out much earlier than we did, instead we trusted those who should have had his best interests at heart. They know why we removed him and they couldn't even argue our decision. My biggest regret was not approaching administration when the situations arose. Although given their attitude and suggestions on how to handle this situation, I know nothing would have changed and I would have been a nervous wreck leaving him at that school every day.

I have been working with him at home on activities that he was doing in school and he is now doing things that even they couldn't get him to do--like propped sitting and taking steps in a gait trainer. He can sleep as late as he likes since he has been having trouble staying asleep at night,he has an Early Intervention therapists coming to our home to work with him, he has had less Salaam spasms and seizures, and is generally a much happier little man.

Just when things are finally settling down and I have gotten him into a routine, it is now time for us to make the transition from an IFSP to an IEP and for him to start attending preschool at a one of our local public schools. And I'm a nervous wreck.

I don't trust anyone with Matt now. I don't know how I am going to leave him with anyone-- he can't tell me if someone is mean to him, if someone hurts him, or if someone neglects him. I was involved with the other school. I showed up at unexpected times to check in on him and to pick him up for doctor's appointments. If he can be treated poorly when I was doing all of that, it can happen anywhere.

Thanks to our pitiful health insurance, the only way he can receive speech therapy and any help with communication technology training is through the public school system. If money and insurance weren't a factor, I would rather have him home with me, but it's out of my hands at this point in time.

If any of you have non-verbal children, have you had any situations arise in school where your child wasn't treated properly? How did you trust others to care for your non-verbal child?

Thankful Thursday: A Sibling's Love-- Guest Post by Team Aidan

Today is our very first guest post and I am so excited. On Sunday I shared an article with you via Team Aidan, one of my favorite blogs, written by Heather's older son Liam. It is important that we remember that having a child with special health issues does affect the entire family. Please read, comment, share, and send Liam some love.

My son Aidan is 11 years old and has an undiagnosed developmental disability. He is non-verbal, uses a power chair for mobility, and requires total care for tasks of daily living. As many of you moms of kids with with special powers know, disability effects the entire family. My 13 year old son Liam is a wonderful big brother and gifted writer. He recently published an article in Pediatric Nursing about living with a sibling with a disability. Below, Liam describes his experience of Aidan going to the hospital for a VEEG (video-EEG test to diagnose seizures). This is Liam's story; it's very different from my perspective and that's important for all of us to remember. His voice matters too.

This was one of the scariest times of my life. It felt like a giant hippopotamus was about to fall on me. My mom and Aidan went up to Portland for the test. It was an overnight study and they were only supposed to stay for a night. My dad went to work like normal that morning and I went to school. When I came home from school, my friend’s dad was there to pick me up. The plan was that I would go to his house and stay the night while my dad stayed at the hospital with my brother and my mom. After dinner I got a phone call from my mom saying that she loved me and that everything was going smoothly and she was having dinner. I went to sleep knowing that tomorrow when I came home everyone would be home and we would know if it was epilepsy or not.

In the morning I got up, had breakfast, put on my coat (it was January), and got in my friend’s dad’s truck to go to school. When I got home that’s when things started to go wrong. Instead of my parents being there, nobody was there. It was as quiet as a ghost. I was used to being home alone and I figured they were just running a little late. After about fifteen minutes my dad’s car pulled into the driveway. I ran out to meet him, a little nervous about what I was going to hear.

“Hi Dad, where are Mom and Aidan?” I asked.

“It turns out they need to do more tests,” he replied, “You are going to have to come up and stay the night and miss school tomorrow.”

I went into the house to pack a bag for the night; clothes, toothbrush, toothpaste; all accounted for. As we were about to leave, my friend’s dad pulled into the driveway and told us that they were able to take me for another night. When my dad offered me a choice of where to go, I instantly chose my friend’s house.

That night I was glad I chose my friend’s house because it was fondue night. The chocolate bananas tasted like heaven. I ate a little bit too much and at three in the morning I puked. Fortunately, I made it to the bathroom in time. However, I decided to stay home that day. It turns out that I didn’t need to for two reasons; one, I was better in the afternoon and out sledding, and two, school was cancelled. I didn’t find out until the next day that school was cancelled so it was all good.

My dad called later that day to say that he was going to come back home the next day and that my Mom and Aidan would have to stay for two or three more days. I went to school the next day and when I got home my dad was there. I was flooded with relief. The next two days were mostly spent waiting for any important news. My dad went up to visit on one of those days. Finally, on Sunday, Aidan and my Mom came home. I was so relieved. We still didn’t have the results though. We had to wait another few days before they came in and then it was confirmed that it was epilepsy. The diagnosis did not effect me as much the anxiety of waiting for Aidan and my Mom to come home. I knew that he would still have seizures no matter how he was diagnosed. To this day I have never liked when relatives stay at the hospital for extended periods of time.

When Heather is not juggling the myriad tasks involved in raising a child with special powers, she can be found singing in her kitchen using a spatula for a microphone or blogging at Team Aidan.

Seven Saturday Snippets: January 12, 2013

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The first week of following a blog schedule has been a relatively big success for this little site. I kept up with most of my planned days, with the exception of Thankful Thursday, which got derailed thanks to fighting insurance companies over therapies, a post for another day.  Thanks to link ups with Ellen Stumbo, Andi at Bringing the Sunshine, and Ellen at Love That Max, I have had over 600 page views and gained some new followers. I am so excited! If you like what I'm doing, please subscribe.  I also have a Facebook page, a Twitter account, and I'm also on Pinterest. Please stop by and join :)

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I cannot tell you enough how much I am looking forward to starting the Mommies of Miracles/Different Dream Book Study this week called You Have Time to Read? This inaugural book study, A Different Dream for My Child  by Jolene Philo, will be spread out over a 12 week online course. For more information, please visit the Mommies for Miracles page at http://www.mommiesofmiracles.com/resources/book-study/.

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Thank you so much to Heather at Team Aidan for sharing a wonderful post about her older son Liam. Liam became a published writer last week when his editorial for Pediatric Nursing Journal about life as an older brother to a child with special needs hit the stands. This post was especially touching to me, mostly because I wonder what Matthew's life would be like if he had a sibling and how having a sibling with special needs would impact them. Please stop by Heather's blog and read Liam's editorial, not only will you will be touched by his love and devotion to his brother Aidan, but you will also get to meet a young man who is wise beyond his years. I am also very excited to say that Liam will be doing a guest post here in the very near future.

--- 4 ---

For the first time since 1995 when Heather Whitestone won the title, I am motivated to watch The Miss American Pageant. Why? Because for the first time in pageant history a contest with Autism will be competing.  Alexis Wineman, Miss Montana, was diagnosed with PDD-NOS at the age of 11 and faced taunting and bullying due to her condition. Her pageant platform is "Normal Is Just a Dryer Setting" which I LOVE. She didn't make it to the crown, but she did get picked for the top 16 and raised a lot of awareness for Autism.

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One of my favorite stories of the week is about Evan Moss, an 8 year old with Tuberous Sclerosis and Epilepsy, who wrote a book to raise money for his own service dog. Evan raised  $42,000, enough to fund his service dog Mindy and to help 7 other families. You can visit Evan's blog Dog 4 Evan to learn more about the service dog placement process



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I just saw this post tonight on one of my new favorite blogs, As We Seek, So We Shall Find, and I love it so much. In the beginning of our journey into "Special Needs World", I have never felt more alone and out of sync with life than I did at that time. And sometimes still do, but it's much better than it was then because I have people I can turn to and talk to who understand what we're going through.  I wish I had been given this post, that I had known someone who could have sat down and talked to me, someone who would have listened and let me break down and get all of the ugly thoughts out of my system. I hope that by sharing Mags' post, someone who needs this letter will see it.



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This week the biggest news in our house is that Matthew finally got his gait trainer! He has been using one in therapy for a couple of months now and is definitely not a big fan. Needless to say he was not thrilled when our favorite mobility man, Sam, came in with one yesterday morning. The first time getting in the harness went as well as expected, but the second time magic happened. He realized he could move and took two steps back and started dragging his feet to move to the side. It will be so much easier when he gets his knee immobilizers, but his journey to movement has started and with more than a single step.

For more Seven Snippets, visit Bringing the Sunshine!

Wordless Wednesday: 1/9/2013

The picture below was taken a few days before Christmas at Matthew's school. It is a mural honoring the children who lost their lives at Sandyhook Elementary School. There is an angel for each of those 20 precious lives.

Even almost a month after this unbelievable tragedy, I still have no words.

Why I Write

I write because I have a voice and things to say. I write because my little boy cannot speak for himself.

I write because I was so alone when he became sick and our world turned upside down.

I write to not hold things in. I write to make myself strong for him.

I write so that maybe someone will see this and maybe not feel so isolated and reach out. I write because words are powerful and can build community.

I write because I survived dark times, survived hearing the worst possible scenarios from doctors laid out on tables like a losing hand of cards. I write because he proved them wrong.

I write to fight, to advocate, to challenge and to dispel myths. I fight his dragons with words and actions rather than swords.

I write because I want to make a difference.