No More IEP Meetings!

Today Mike and I attended our last IEP meeting. Yippee!  I counted 47 IEP meetings, at least, since 1997.  Two of our younger four boys had varying disabilities, ranging from speech impairment to autism.  Both of them, Stuart and Cameron, have sufficiently progressed to function as neuro-typical kids!  The other two, Ryan and Nick, still have autism, but their progress is no less remarkable!

So what is an IEP?  Basically, it's a written contract in which educational goals are written for the individual with special needs.  Its focus is to educate the individual person, geared towards the issues and abilities of said person.  IEP stands for individual educational program.

These meetings can be stressful and grueling, or they can be uplifting and reassuring. HA.  They are usually grueling.

The participants are comprised of teachers, a psychologist, therapists, parents, and student, called the TEAM. Frequently, the school staff discuss the goals of the student before the meeting, though I don't think anyone would really admit to that.  When the meeting commences, the goals are already written.  If the parents agree with those goals, there is no problem.  If the parent disagrees, then PROBLEM.  It can become a battle or a downright WAR.

Sometimes our meetings would last three hours, and we'd have to postpone any conclusion.  Those were horrific.  Our child's needs were not being addressed appropriately, and as parents, we had to ensure they were.

And the paperwork!  I have four binders full.

Over the years, I learned that certain vocabulary terms were necessary to get what my child needed.  Also, what one school could do was different from what another school could do, even in the same district.  Some special ed classes were offered only at select schools.  The staff, depending how dedicated to the student, may or may not want to implement other goals.

Quite often, I felt like an intruder rather than a team member.  I always had someone else accompany if possible.  Whether it was my husband or father, having an advocate helped streamline the meeting.

Not all meetings were terrible.  Some could be pleasant, especially if I knew the staff.  Getting to know the principal, secretary, and teachers helped to get my children what they needed.  I volunteered a lot.  That made a huge difference, and my boys prospered.

So with this last IEP, all my boys are moving toward adulthood.  As they transition into the "real" world, my life also adjusts.  There are no contracts with employers or colleges.  I am concerned how my boys will progress, but as always, it's one day at a time.  Seeing how they have succeeded thus far, I am confident they will find their way, and I will find mine.

GOOD BYE, IEPs!

Three Teenagers--And Then There Were Two!

Nick, Cam, Ryan

Today is the last day I will have three teenagers in my home.  Tomorrow Ryan turns 20.  Talk about him growing up within the blink of the eye, but then I think of all the tears and joys along the way of his 20 years.  Quite a life he has lived so far.

For the first couple of years of his life, Ryan was fearless.  He knew no boundaries.  It was scary.  He met all his milestones early, such as walking when he was nine months.  As he developed sensory issues, he lost communication skills.  We went to doctors and specialists for several years.  He was diagnosed with several ABCs, 123s, meaning PDD-NOS, ADD, OCD, and speech delay.  Ultimately he was seven when he was diagnosed with autism.  His brothers were diagnosed the same year with autism too.

Our world was rocked.  We brought in lots of therapists to work with them.  None of the boys liked strangers.  Until Meredith.  The boys took to her.  Ryan was the fastest to respond because he liked her baby.  Meredith and Baby brought Ryan out of his world.  We loved her immediately.  She also worked well with Nick and Cam, but most people had the hardest time establishing a rapport with Ryan.  Unfortunately, Meredith moved, and Ryan had to adapt.  That didn't work so well, but that relationship showed us that Ryan could connect with people outside the family. That was 12 years ago.

Ryan showing Dad his photos

Ryan has had many therapists since, and he has moved beyond what any doctors thought possible.  He continues to grow beyond our initial hopes after the diagnosis.  In fact, he finding his way in the world slower than his peers, but he is succeeding.  For example, we have been surprised by his maturity in the last year, especially as illustrated in his photo shop class.  He was quiet and shy, and now he is assisting beginners.

I can't wait to see what this decade will bring Ryan!

Second photo credit:  RMG Imaging Artists

Prepping for Surgery

I tried to describe this experience to a friend:  The "something that may be cause for concern" is a "nothing to worry about" that "needs surgery".

I've seen a few healthcare professionals recently.  At every appointment, I'd hear the same tip-toe dance.  As the medical visit progressed, the doctor or nurse became very reluctant to speak.  The above quotes were uttered by these medical professionals, just not how I have strung them together.

This reminds me of all the testing Ryan went through before being accurately diagnosed with autism.  Ryan was two years old when we started seeking medical help.  At the age of 5, he was initially diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified), meaning there was something going on, but the docs didn't have a clue.  As the years passed, ADD, ADHD, OCD,  and speech delay were added to the list.  Doctors couldn't agree.  Just for humor, I added ABC and XYZ to the list.  When Ryan turned 7, he was finally diagnosed with autism.

I have since learned that medical and educational professionals like to "ease" parents into a potential diagnosis.  They seem to think that is acceptable, and we parents appreciate the steps leading to a devastating reality.  NOT TRUE.  At least, in my case, I'd prefer to be told the worst case scenario, and then ease up if necessary.  Each diagnosis that Ryan endured broke my heart more and more until it was finally shattered with the diagnosis of autism.

So now it comes to me and a lump.  Each nurse or doctor initially told me not to worry.  However, when each heard my family history of "lumps", the demeanor changed.

My father has survived several types of skin cancer, including melanoma.  He has also survived lung cancer.  Twice.   The last time he was given 4 months to live.  That was 13 years ago, and he is alive and well.  I call him a walking miracle.

So out will come this lump.  I told my sons individually.  Each reacted differently.  Stu freaked.  Ryan and Nick accepted it quietly. Cam was on the phone, telling his friend all about it. They understand that, as of now, it's just a lump.  When it comes out, it will be sent to the lab, we'll find out if it is something more serious.

I am still not worried about me.  I am concerned about my sons and being to progress without guidance, so the focus this summer will be to give them opportunities to problem solve and be independent.  Of course, all parents strive to teach their children to be independent.  It will just take a little longer for my boys with autism.  With or without me.

Getting Through The End Of The Quarter Workload

Nearing the end of the quarter is not fun for teachers or students.  For an autistic teenager, it's an anxious-ridden, turbulent time.  If autism is coupled with OCD (Obsessive Compulsive Disorder), it's a nightmare for the family. 

This last weekend Nicholas presented me with the work he had to accomplish.  He had a huge project due on Monday.  He also had a major test in that same class on Monday.  He had another project due later in the week.  This particular project required drawing and writing:  the two weaknesses of Nicholas.  There were other assignments and tests, also due on Monday.

Monday Morning Blues awaited, but we could lessen that impact with hard work.  The trick was to not let Nicholas feel anxiety.  Once that hits, game over.  That means he can't focus anymore.  Literally.

I spent the weekend working with Nick.  We prioritized.  What had to be done immediately?  What could we use as a "break"?  When I saw how much information this one test was going to cover, we instantly started studying.  I learned with him.  We focused on major concepts.  Then we added details.  Memory is Nick's strength.

When we had to take a break, we focused on the projects.  We alternated memorizing and projects.  Until 5pm Saturday evening.  I could see stress starting to build in Nick.  We had covered so much, yet we had much more to do.  I had to pace us--to keep going slowly but steadily.

By 6pm Nick's eyes revealed signs of anxiety.  We stopped.  I made a decision.  No more project work.  Nick's eyes widened.  I told him enough was enough.  He had to focus on one item.  I said the test was more important that the project.  I told him I'd email the teacher right away.  He was unsure, but he immediately sighed.  Really.  His shoulders relaxed.

I emailed the teacher about the situation, even saying that I assumed she would be understanding and generous.  I received a reply Sunday morning.  The teacher agreed to let Nick have an extension on the project.  She enlightened me that she knew Nick had been working on it since the project was assigned.  He was asking her questions daily.  So this definitely was not a case of procrastination.  I showed Nick the teacher's email, and he was happy.  Nick was happy.  :)

Nick came home yesterday, and he said that he thought he did well on the test.  It hadn't been graded, but he wasn't concerned.  Which is unusual.  He said he had to focus on the projects.  Last night we drafted three pages of his project, and he completed them.  Tonight we'll do the graphs and the written assignment.  That will be one project done.

Then the next project awaits.  Always, one at a time!