IEP Review – To Ask or Not to Ask

When I received the letter that it was time for Bryce’s IEP meeting, I knew I had some decisions to make. This was the year of Bryce’s three-year review. In addition to just reviewing Bryce’s goals for the year, a decision would be made if additional tests or questions needed to be answered in order to adequately “program” for Bryce’s education.

An IEP, or Individualized Education Program, is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services. A mental illness, learning disability or autism all can be considered a disability under the law. When you already have an IEP , each year at the review meeting, a large team of people sit around a table and discus the student’s progress and goals for the upcoming school year.img_5237

An IEP meeting can sometimes be confrontational or difficult since the parties involved do not always agree or what is in the best interest of the student. Often the parents want something different than the county or school officials want. At times, educational consultants and attorneys are needed. Luckily, ever since Bryce has been at The Frost School, our meetings have been non- confrontational and everyone has been on the same page.

As I mentioned, every three years, there is a question at the meeting to determine if there is a need for a full review.

Since Bryce’s school – The Frost School -actively participates in drafting the IEP, prior to the meeting, they called me to ask if I had any questions or what I thought about the three year review. They stated that the knew Bryce well and felt they could program for him adequately. I thought about it.

Bryce already gets full Special Education services, Occupational Therapy and Speech therapy. – all fully paid for by our county. He pretty much gets the maximum. Social skills and equestrian therapy are included. He is in a class with a 4:2 ratio. There is a social worker for his program and a behavior teacher. They teach life skills like hygiene and landscaping. I really can’t ask for more.

Or can I?

It took a long time to get Bryces IEP. When Bryce was evaluated years ago and initially qualified for Special Education services, the only disability he qualified under was Emotionally Disabled.

Just like Bryce’s diagnosis of Bipolar Disorder – an IEP coding of Emotionally Disabled has limitations and a stigma attached to it. In fact – in Maryland it is called Emotionally Disabled, but the federal law still uses the term “Emotionally Disturbed.” Talk about stigma! The ED Coding also limits the schools that Bryce can attend. Many schools are not certified to accept children with the ED coding although children with an ED coding may exhibit the same behaviors, symptoms, challenges, difficulties and learning differences as other disabled children. They may also need the same services.

Bryce has changed a lot over the past three years – a lot in part due to the services he has received, as well as due to maturity and medication. His emotional disability no longer seems to be the driving force behind the challenges he faces in school. So, although he gets an excellent education fully paid for by Montgomery County and is doing well, when asked the question, do I think that Bryce needs a full re-evaluation – clearly my answer is yes.

I know that Frost can write adequate goals for him and give him an education and the services that he needs. But I do not think that the tests that were given to Bryce three years ago are an accurate picture of Bryce and his abilities and learning differences currently. I am not convinced that Emotionally Disabled is the correct disability for Bryce at the present moment. His moods are mostly stable. He does not read, write or do math at grade level however. He clearly has a learning disability, but I do not think that at the current time it is his emotions that are keeping him from learning. It is something else.

Testing takes time and money. It is frustrating. It is not a perfect science. It might show something different.
So of course I want to go through with the testing. I want the time taken, the expense taken. I want to put Bryce through the tests. I want to fill out the parent questionnaire. I want to make sure that Bryce gets the right services, is in the right classroom and is taught using the appropriate methods and given the right accommodations.

As a parent of a child with special needs, that is my obligation – my job to fight for my child. To ask the questions, to request the testing, to ask for everything that is possible. It is legally required of the school and it is Bryce’s right to an education that is in his best interest.

Many parents do not want their child labeled as disabled or different or special needs. I encourage you – if your child is struggling or needs help – get them the help that is legally out there for them. It can truly help them grow into the person that they have the potential to become.

Maybe the test will not provide any additional answers – but I want to know that to. I owe that to my child.

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Dear Parent of a Child Diagnosed with a Mental Illness

Dear Parent of a child who was just diagnosed with a mental illness,

I know how you are feeling. I remember when I first got my son’s official diagnosis – ADHD and Mood Disorder – NOS. There were other words. I remember it said Bryce would not be able to attend kindergarten without medication. I was sad, scared and worried. I am sure you are feeling all of these emotions and others.IMG_0173

Your expectations for your child may change, but this is not the end of the world. No matter what diagnosis your child was given, nothing about your child has changed. You still have the same child who you love, laugh with and cry with. Your child will still make you smile and still piss you off a lot.

Hearing or Reading the words – whatever they are – Depression, Bipolar Disorder, ADHD, etc. is hard, but they are just words. Do not worry so much about the exact diagnosis. It can change. It will change. Bryce’s has changed several times. It will probably change again. Unfortunately, mental illness is not an exact science.

Having been through this, I can offer some advice. Hopefully you find something here that’s helpful.

  • Find professionals that you like. If you are not comfortable with the psychiatrist, social worker or therapist you are using, change. You have every right to do that. Ask for recommendations from people you know and trust. Each time you change, you tell your story again so it can be tiring, but if it is to find a good fit, it is worth it.
  • Ask for help at your child’s school. Ask the school for an evaluation so your child can get accommodations – a 504 plan or an Individual Education Plan (IEP). Even if you do not think your child needs help academically, there may come a time where they need breaks, social skills support or other accommodations. They deserve this. They may also qualify for OT, Speech Therapy, etc. There are so many resources out there that you may not be aware of. If you can afford it, hire an Educational Consultant. You will get more services quicker because the school systems will know you mean business.
  • Understand the diagnosis, but do not worry so much about it. Make sure that the professionals working with you are treating the behaviors and symptoms – the impulses, the depression, the hyperactivity, psychosis, anger, etc. The diagnosis may matter, however, for certain services and resources. For example, in some circumstances. if you get an autism diagnosis, there may be more resources available to your child.
  • Research all you can. Find out what programs are offered in your area for support, therapy, social skills, etc. For example, are there any organizations that offer after-school activities for children with special needs.
  • Join a support group. If you want to talk to other parents going through the same thing, look for a support group in your area. Most NAMI chapters offer one. NAMI also offers classes that teach the basics of supporting a family member with a mental illness. If you join an online support group, DO NOT listen to everyone on the Internet. Everyone’s situation is different and some people only want to complain. Find what helps you, take breaks when it seems tough, and find the support that is helpful to you.
  • Take care of yourself. Don’t forget to take care of yourself. Self care is crucial in order to be a good parent.
  • Try not to worry and think too much about the future. This is incredibly hard to do, but you have to try and take things day by day. Sometimes even hour by hour. Things will change. A few years ago, I was told to prepare for the fact that my son would most likely have to live in a Residential Treatment Center. He was that unstable. He had five hospitalizations, including one that lasted for 45 days. I was not wanting to accept that. I worked hard to get him into a Therapeutic Day School. We changed his medications. We changed his behavior plan. We worked on his self-esteem. It took time, but we worked hard to make things better.  Things have changed – the diagnosis – now it is Bipolar, PDD, Anxiety, ADHD. He has sensory processing disorder as well and language delays.images

    But with all of those words, Bryce is also doing better. He is now mostly stable, has been stable for a few years and is doing well. There are bumps in the road, but that is ok. Right now my son has a friend from school over and they are going to the Trampoline place tonight, together. Typical teenage Friday night behavior.

So, what do I tell you as a parent? There is hope. There will be ups and downs.

Just do your best, whatever that best is on any given day. That is what I was told, and that is what I pass on to you.

What you don’t see on Facebook

Facebook. Instragram. Twitter. Snapchat. We have all gotten used to sharing our lives with our friends on Social Media. And it all looks so nice.

Everything looks great in those moments. You can even “filter” things so that they look even better. Some people are experts at how to take the best selfies.

I love how my family looks in those moments. Everyone is smiling. My family looks perfect.

A lot of these moments happen when we are on vacation. These “perfect” family moments.

When you have a child with anxiety, a mood disorder, developmental delays, etc., vacations are not always easy. When you have a child with a mental illness, things do not always go as planned. Don’t get me wrong, I love vacation and I love being on vacation with my family. I post a lot of great family photos from our vacations.

Here are some things from our vacations that did not make Facebook –

1. West Coast Road Trip – Last summer went took a road trip from Seattle to LA. We had a great time. This was a fabulous trip. And a long one. We did a lot, including Yosemite. Our pictures are amazing. The trip was amazing. We did not take any pictures of Bryce screaming at us throughout Yosemite, “I hate you all. I hate my family.” Our pictures do not show Bryce threatening to jump from a bridge at the waterfalls in Oregon. I can’t even tell you why he was screaming or why he got mad during any of the trip. I can tell you that Bryce loved Chinatown in San Francisco because he got a stuffed animal and he loved LA because he met my friend Ashley. That is all he remembers from our trip. That’s it. But that is ok. That is all he needs to remember.

2. Spring Break in the Shenandoah. Wait. That vacation never happened. We had to cancel it because Bryce was in the hospital. Instead we spent everyday driving back and forth to Towson to spend our one hour a day visiting our son (Did you know when your loved one is in a psychiatric hospital that you can only see them for one hour a day at a designated time?) There should have been pictures of staying in a cool cabin, hiking, etc. Nope. The pictures from our drives back and forth to Towson did not make Facebook.

3. Deep Creek SummerIMG_0384Here is a picture that did make Facebook. But right before this Bryce hit me and threatened to jump off the mountain. He was upset about something I cannot even remember and it escalated. We had to calm him down and make him safe. So, we did what any parents would do. We bought him ice cream. The pictures of him screaming and hitting me didn’t make Facebook. Neither did any pictures of parents telling us what we should have done instead. I cannot tell you the amount of times other people have tried to give me advice because they do not understand – I have learned to just politely nod or ignore them. Maybe I will take a picture next time. People also speak to Bryce directly – “Don’t talk to your mom like that, young man.” That isn’t really a good idea. When in a rage, Bryce tends to spout out some not so nice words.

4. Trip to Dutch Wonderland – One of our least thought out decisions was to stay at a quaint family farm in Pennsylvania near Dutch Wonderland. It was a family friendly farm that had tours, a trampoline, breakfast, etc. They had kittens. Bryce didn’t exactly know how to play with the kittens. He didn’t exactly know how to act at all. We basically left in the middle of the night. It’s a long story. It was a failed vacation. There are no pictures on Facebook.

5. Float Trip – Let’s just say one of my kids wound up in the water because the kids were fighting too much. That’s all I will say about that. Not on Facebook.

Basically I will just sum up and say that most of our vacations have good moments and bad. I didn’t even mention our cruise from last December. Bryce had an amazing time for 85% of the cruise. The first night, however Bryce had a meltdown and we had to restrain him. He was screaming and threatening to jump off the balcony.

I say all of this tongue in cheek and jokingly. But all of these stories are true and were terrible, scary moments. We got through them all and we managed to have great vacations. We show you the good and not the bad.

So if you are a parent of a child with mental illness or a disability, and you are struggling – Don’t worry. Relax. You might think everyone else is having more fun or having a “perfect” vacation, but just realize – they are only showing you their best moments.

We don’t know what goes on in other people’s lives. We only see the good and we all project that our lives are wonderful.

No one’s life is perfect. Some of us struggle more than others, but everyone has their struggles.

Life will not always be perfect, but it will be wonderful.

By the way, there are great places to go on vacation with kids that have special needs, especially all inclusive resorts. I will save that for another blog post!

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Our West Coast Road Trip – Bryce is smiling at Yosemite.  But this is before we are hiking. We drove to this spot! 

The Other Child

Since my blog focuses mostly on Bryce, I was asked if I struggle to make sure my other son doesn’t feel left out. It is an interesting question because I actually more often worry if Bryce feels left out because I think we pay a lot of attention to Cole. I try and pay attention to both of my kids.

What I think is an important question is how Bryce’s illness affects Cole. Mental illness

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Cole spending quality time with Terry on vacation

affects a whole family for a wide variety of reasons. Luckily, our family is strong and I think has become strong in spite of or at times because of what we have been through.

As for Cole, when we were interviewed for the Sheppard Pratt Heal magazine in 2014, I asked Cole how Bryce’s illness affected him. He said, “it effected me emotionally when he went to the hospital because I did not have a brother at home to play with. I felt lonely.”

When Cole talks about when Bryce was in the hospital, those were the times when our family was in crisis. Things were bad for a long time. When Bryce was younger and truly unstable, he was violent- not towards Cole, but towards himself and towards me as his mother. Bryce had no impulse control, no frustration tolerance, and he could not handle his moods. Anything could trigger him and we never knew what was coming. He would be fine one minute, and then he would explode. These outbursts would result in physical attacks, objects being thrown, and Bryce wanting to hurt himself – banging his head against the wall, trying to jump from the balcony, running around the neighborhood trying to get hit by cars, and so on.

As a parent, my job was to keep my kids safe. Bryce was so unpredictable that was hard to do for him. I also had to worry about Cole’s safety – emotionally and physically. I did not want Bryce’s behavior and illness to affect him negatively. I needed to have a safety plan. When things were at their worst, I usually had another adult home with me. I hired someone to be here with me during the hours that the kids were home from school but Terry was at work. If there were times when we were alone and Bryce was having a tantrum, I had a code word that Cole knew. Cole knew to lock himself in the basement or go to a friends house.

There were times Cole would get upset that we were giving more attention to Bryce or that Bryce did not get a consequence. This is common in families with children with special needs. I actually think this is common in a lot of families. Bryce does not handle consequences well, especially when in crisis. We would explain to Cole that life for Bryce is not easy and so while it might seem unfair that he isn’t getting the same types of punishments as Cole or that we are having to spend time dealing with a situation, life is not always fair for Bryce either.

We always made sure we explained things to Cole in ways and with words that he could understand. For example, when Bryce had to go to the hospital, we’d explain to Cole that Bryce’s brain was sick.

While life might not be easy for Bryce, it is not always easy to live with Bryce either. And it does take up a lot of time and attention. For this reason, we would make sure that Cole got his special attention as well – special trips with Terry, special time with Mom. He deserved it. Family vacations were always hectic, including a Spring Break trip that got canceled because Bryce was in the hospital.

For now, our crisis has passed and Bryce is stable. Cole seems to have come through crisis pretty well. He is thriving. Cole is strong, kindhearted and caring. I hope it continues.

If you have a child with special needs and other children as well, I have these tips

1. Have a safety plan – If your child is known to be violent, make sure your other children know what to do to be safe. This can mean locking themselves in a room, calling someone, leaving the house and going to a neighbors or anything else reasonable and age appropriate that you come up with. You need to make sure that they know when to act on the safety plan and that they feel safe. I strongly recommend having an aide. The person does not have to be trained to deal with special needs children, they just need to be there for your other child or to help you when needed.

2. Spend special time with the child not in crisis – A child with special needs takes up a lot of time and energy, especially when that child is in crisis. Make sure you plan some alone time if possible with your other children. This could be a special night out, but it can also be as simple as reading a book at night or cooking a favorite meal.

3. Explain in simple terms why you “parent” each child differently – Many times children with special needs do not respond to traditional consequences and this can be hard for other children to understand and comes across as unfair. Explain to your other children in age appropriate terms why you are parenting differently, that each child is special in their own way and your other child is not just “getting away with it.”

4. Allow the child to talk to someone – Don’t think that just because someone doesn’t have special needs or a mental illness they don’t need to talk to a therapist or other professional. If there is violence or a crisis going on in your house, it might be a good idea for your child to speak to a professional.

For additional help and resources, check out these links:

Supporting Children with Special-Needs Siblings

The Other Kid