Finding the line

So, we have the diagnosis of APD.  It is helpful to know that K hasn't just been willfully disobediant and/or defiant.  It has helped our relationships with him to know that.  BUT, we are struggling with how do we differentiate between blatant behavioral issues and APD related lack of understanding.  It is a challenging place to be as a parent.

Clearly there are boundaries.  Hauling off and hitting his brother is automatic time out for K.  But, what about 'K, go do ~insert single task here~'?   

Volume level in the house is another one.  Inside voices has been a phrase we have used for 5 years with K.  Clearly not something new.  That said, does K's volume escalate when he is struggling due to APD?  Kevin is also a sensory seeker (SID) so that coupled with the issues of not being able to 'hear' and yikes what is a parent to do?

His diagnosis was generalized APD with larger issues (I know that isn't the right phrase) with Tolerance Memory Fading and Decoding.  One example from the testing was the test sentence was 'Answer the telephone when it rings.' and K heard 'How does the doorbell ring?'.   During another part of the testing one word was played in one ear, another in the other, and two words simultaneously in both.  K was instructed to repeat the 4 words and he shut down not long into it because, to quote K, 'there aren't 4 words!'.

I'm doing some reading right now to ground myself and try to get the ball rolling, so to speak.  K starts Fast ForWord on July 6 and will do that through August 16 with school starting the 18th.  He will continue in OT during the summer and will start speech therapy in August with a ST who goes to visits his school (private school and private ST).

As a type A, control freak mother, I am coming to terms with things not being controllable, predictable, or even at times understandable.  It is humbling.  But, the love I feel for my children is endless and supporting, loving, and helping them is far more important to me than being in control.

Similar to when we got the allergy diagnosis there is a period of grieving, a time to reflect upon that which won't play out how we anticipated and hoped.  I wouldn't trade K for anything, so it is merely a time where I come to terms with the diagnosis,  accept things for what they are, arm myself with as much knowledge as possible, and move on with the process of providing him with the tools and skills to be his best, whatever that may be.

How can I resist a smile like this, right?  Smiles like the one in the picture below are all the encouragement a mother needs.

Competitiveness and a special needs child

The end of the school year has been hard on me. There is good news that my above average sized 6 year old will proceed to first grade, but it is with some concern and trepidation on Mommy's part. I cringe when I read updates on how fantastic friends kids did. I feel like a big pile of doggy doo when I feel that way, but it doesn't eliminate the fact that it is how I feel. Then I feel like imposter Mommy. You know, where you feel you are coming up with things wrong with your child to explain away what is really poor parenting. Sigh.

That brings me back to my personal flaws. I'm realizing just how competitive I am. Reading K's end of year scores and test results was humbling for me. I have been incredibly blessed throughout my personal academic career. Things came easy to me and I did well. Things are not coming easy to K and it is new territory. It terrifies me as a mother. I know how mean and cruel kids are as social skills didn't come easy to me growing up. I really fear for K and how his classmates will treat him. He doesn't understand the nuances of interpersonal relationships. APD is part of it. Some days I wonder if it is more. I've made a phone call to follow up on those moments of wonder.

His reading and language marks were average to a touch below average. His math skills were average to above average (not surprising for anyone who knows M and I). His handwriting was scored marginal, as in doesn't meet standards for grade. K has been working the Handwriting Without Tears (www.hwtears.com) program for well over a year, and well, K can't write his letters without tears. K's essential tremor contributes, but really, if he can't meet Kindergarten standards will he ever be able to meet them? Then again, does it really matter? Seriously, how many job interviews start with a handwriting sample? Thank goodness for the digital era.

I don't want life to be easy for my kids but I certainly don't wish that it be hard for them. K is going to have challenges all the way through school. I'm looking forward to his APD therapy program starting in July so we can see how that goes. I have also called for an appointment with a Psychologist who specializes in developmental disorders. I want to get the ball rolling to see if there is more going on than what we have figured out so far.

Seriously, the kid has seen almost every specialist in town: GI, Allergist, ENT (Ontolaryngology round one), Opthalmologist, Otolaryngology round two (APD diagnosis), Neurologist, Speech Therapist, Occupational Therapist, and now Child Psychologist. Please don't get me wrong, we are AMAZINGLY blessed parents. He is an amazing, beautiful, loving child. He just has some challenges and we are trying to figure out how to best help him.

As you would say in digital land I heart K! He is my big boy. I adore him and promise to him that I'll figure this out and try my best to make it easier for him.

Random thoughts, mostly about K

Short business trips always end up being a time of some introspection. Longer trips I really start missing my guys, but shorter trips allow me some time to stop and think about things for a bit without getting lonely. Time with my thoughts is fleeting so I love the chance. One of my co-workers always stimulates positive thinking for me and helps me remember what is important, what to focus on, and how to keep all the balls in the air.

I’m really not sure where things are headed with K. The APD diagnosis gives us something to work with over the summer. There are other things still on the table that I have moments of worry about but then it passes too. We may still be dealing with ADHD or with Asperger’s. I have mixed feelings about both but know ‘what’ it is doesn’t matter, the love I feel for him is the same. I just want to know how to best support and help him develop. We have to work on the APD first to see if that helps the symptoms of the others.

Today was a big day for us. It was the last day of school. K has done well enough that he isn’t being held back so we are officially the parents of a first grader. I’m not sure how that has come to pass. Seven years ago this week I found out I was pregnant with K. Now he is a first grader. Somehow it seems like it was just a little while ago I saw that second line of the test.

T starts two day a week preschool in August. It will be the start of a transition. He is growing and developing so quickly. It really makes M and I step back and realize how much we missed with K. T is so much more verbal, knows many shapes, identifies letters, and counts. All stuff that K didn’t do until far later. Layer on top T’s physical strengths and abilities and boy do we feel like cruddy parents who missed a lot of signs that K was struggling. That said, nothing we can do to change that so keep working to help and support him as much as possible.

Work has been busy. Good busy, but crazy busy. M is going to come with me to EVO in Park City later this month. It is nice when work and life briefly coincide. The kids will stay here but we are really looking forward to the time together. Work is sponsoring the conference so that part will also be very interesting. I’m hoping to get a clue about blogging while I’m there and this will hopefully be a better place to visit come July.

The weekend after EVO we are visiting my brother and his family in NY and we are VERY, VERY excited about that. The cousins have a blast together. Stay tuned for pictures.

Crazy Couple of Months

Wow, what a crazy couple of months it has been. I need to get on here more frequently as an outlet. I've been letting my desire for perfection get in the way. So, what has happened since I last posted?

2 more teeth came out
T sprouted 3 new teeth
K, Mommy and Daddy went to Disney for Easter weekend
Work has been INSANE including travel
K was diagnosed with Auditory Processing Disorder
K has passed one round of allergy testing which indicates he MAY be outgrowing his peanut allergy
T is becoming increasingly verbal and making M and I feel badly about not realizing K had issues earlier
Family vacation planned to visit my brother in New York

I am sure I'll be back to post more about APD. I'm trying to find my way through it and figure out what we need to do. K is signed up for Fast ForWord this summer and I've spoken to the speech therapist we will work with during the school year. Of course, NONE of it is covered by insurance as it is not due to disease, illness or injury. Also trying to figure out details on an FM transmitter for the classroom.

I'm battling some crud which I believe is the culmination of a couple of months of stress. Every now and then the body has to throw up the flag of surrender and recover. Thank goodness for antibiotics!!!

Sorry for my shoddy blogging. I just started playing with the blog in January and haven't had time to figure out what I want to do with it. Perhaps I'll get some ideas at EVO in Park City. It may end up morphing a bit to be more about APD or it may stay as a general blog about the kids. Who knows???