Dean's Debut

My grandson, Dean, was born this morning. He is 21 inches and 8 pounds.  Good size; healthy boy.  Yet, I cringe.  With a new life, there are so many dreams.  No one wants to think of disabilities and shortfalls.  However, I have to admit I am concerned about a lurking disability in his future.  I have talked with my son about potential dangers that could trigger issues, but "it" is still an unknown.  Since our sons' lineage showed no inherited disabilities, we had very little concern, but BAM, four of our boys were hit.  Stuart had a speech delay and speech impairment.  Will his son have the same?

Of course, I'm not bringing this up to anyone at this time, but it is a thought in the back of my mind.  I am not the parent.  I really can do nothing but watch.  I can coach my son.  Maybe give advice if he asks, but I can take no action.

After four boys with special needs issues and constantly in active mode, this is different for me--being quiet in the background. I've learned to speak up and quickly.  Sometimes loudly.  Often repetitively.  I could be in the doc's office or school meeting.  The squeaky wheel gets oiled!  If I spoke up, gently but assertively, my boys usually received what they needed.  Being quiet usually yields nothing.

For now, we enjoy the birth of our first grandson, and quietly I will have to rely on a little bible verse: Matt 6:  33-34.  33"But seek first His kingdom and His righteousness, and all these things will be added to you. 34"So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough troubles of its own.

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!

Stuart Moving Out

The mission of a mom's love is to say good-bye.  Pure and simple, that is what a mother wants:  to raise her child to become an adult who can go into the world and be the best that he or she can be.  Of course, that is oversimplified.

My son, Stuart, has officially signed a lease for an apartment.  He's moving out of the house.  Stuart is more than ready, yet not quite.  I don't think anyone is really ready to move out.  The only full proof way to learn how to be on one's own is to be on one's own, like on the job training.

He'll have to meet deadlines, plan his time, budget his money, etc.  Oh, and those choices.  He'll have to make wise choices.  The School of Hardknocks is a tough one, but it employs one of the best teachers:  Experience.

Stu's moving out is really a bittersweet moment for me.  Stuart was diagnosed with a speech delay in first grade.  The kindergarten teacher was the first to point out that Stu seemed to stray in conversations.  Mike and I had noticed some variances from normal conversation, but nothing really askew.  The most noticeable issue with Stu was his word choice.  He'd use a related word instead of the usual word.  For example, "How many pounds are you?" vs "How much do you weigh?"  I often wondered if Stuart will ever understand the proper words to use.  Will strangers be able to understand him?

His speech delay hampered his development of vocabulary.  He was very literal.  He understood synonyms, antonyms, and homonyms, but he studied them to understand the relationship of the words. When it came to homework, he had to work twice as hard as his peers to learn half as much. Nonetheless, he was always on the honors list.

At school, I met with teachers before school started to explain Stuart's learning disability.  Because Stuart didn't "present" any disability, most teachers would assume nothing was wrong.  Once I pointed out the issue, teachers would realize and acknowledge the unusual way he interpreted lessons.

When Stuart went to the junior high school, life became a battle.  With the change of teachers for each class, Stuart had to work even harder to maintain being on the honors list. The teachers denied Stuart had a disability.  Teachers even challenged the last psychologist's report.  I had to go to the district level to resolve this problem.  Funny part of this was that the school psychologist who had tested Stu was now the head of the psychologists in the district.  When she called the junior high, I had no more problems.  For the most part.

Stuart decided he wanted to be home schooled for high school.  I tried to talk him out of it as my youngest was going into first grade--school for a full day.  I thought I might have some time to myself. HA.  Stuart presented very sound reasons for being home schooled.  Hence, he was home schooled all four years.  During his freshman year, he tested at par regarding his speech.  Thus, he had no more speech therapy.  Language-based classes were difficult, but he studied independently.  He also pursued and received a piano scholarship and earned his massage therapy license too.

He has completed his AA in business and is continuing his education at the local university.  He's working two jobs to pay for his tuition.  He's had a steady girl friend for three years.

Stuart is moving out.  I'll still worry, but I smile.  Mission complete.

Help Us Get A Job To Pay for Your Social Security

Stuart and girlfriend

Last night my son, Stuart, texted me, advising me that he needed to go to mass with me in the morning.  He normally attends a later mass, geared for teens and young adults.  Let's just say early in the morning draws the "wiser, more mature" crowd.

I found out why when Stuart stood up at the end of mass to make an announcement to the congregation.  He spoke eloquently, coupled with humor.  As is Stuart.

He made a pitch to the congregation to help support the scholarship fund by buying a ticket for a fundraiser.  He received a scholarship a few years back from this fund.  He outlined how he benefitted from the money.  He graduated from the local community college with his degree in business.  Now he is attending the local university, majoring in finance.  Impressive, albeit normal plea.  My guess is that someone wrote the script.

Then Stuart improvised.  Stuart spoke from the heart for a few seconds, expressing his appreciation for not having to work full time that first year while in school.  Touching.

AND Stuart ended with his humorous side while illustrating how buying this ticket would actually benefit the crowd, who is slightly older than Stu by 40 or more years.  Stu logically cited that by helping to build the scholarship fund, that would help the graduating seniors to get a job which will help pay for their (the congregation's) social security.  Laughter!!

Many of the seniors came to me after mass, expressing that Stu has a great future in public speaking.  Considering Stuart was diagnosed with a speech delay in his youth, this is a great surprise!

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.