A Personal Birthday

Yesterday my four-piece family and I celebrated my son’s 10th birthday.

  
I can’t believe how quickly he has grown – the way his feet are as big as my own and the way the top of his head reaches my chin.

I can’t believe the body of knowledge his brain contains about so many things – he is and will forever be a walking encyclopedia.

   

He is interested in and passionate about many things, one of which is “towers”… Basically tall structures. So to celebrate his momentous birthday, my husband took the day off of work and we drove north to explore country roads in a quest for new towers for J.J. to draw and photograph.

When my husband came up with the Quest idea, we weren’t sure if it would as interesting and fun to J.J. as we hoped, but he was more excited than we had expected and it turned out to be an amazing experience we shared as a family…

  
One our son will likely remember for the rest of his days.

That is the best kind of birthday.

When Change Is Needed

Sometimes things seem to be working out just fine, until one morning you wake up and nothing seems to be working anymore.

Your routine, your appliances, your lesson plans, your to-do lists, your efforts with anything… There is something amiss with all of it.

As I expressed in my last post, my husband and I have a deep and sincere desire to forge a new life for ourselves and start a homestead. We have realized for years that we simply don’t fit into the current social standards and ways of living and a great change seems to be needed.

But sometimes, only small changes are needed – and these small changes can have a large impact.

Recently I began noticing that my son was having a hard time with his fifth grade curriculum. I don’t think there is anything wrong with the curriculum itself, nor is there anything wrong with my son…it just isn’t a good fit at the moment.

It just wasn’t working.

Being only 9 1/2 years old, a fifth grade curriculum is a year (or two) ahead of what other children his age are working on. We jumped ahead a year when we pulled him out of public school, only a couple of months into his kindergarten year, because he was already ahead academically and we thought he could handle a first grade curriculum. And it turned out he most certainly could.

Though we had many battles of will (which we still do), he was more than capable of handling curriculum that was more advanced than what his peers probably had. Until now.

Up until about forth or fifth grade, a lot of a child’s learning is rote memorization. While working on our forth grade curriculum last year, there was a great deal more critical thinking and reading comprehension involved, which J.J. has a lot of difficulty with (I think mostly due to his being on the spectrum), but we forged ahead anyway. I thought if I just kept challenging him and pushing him forward it would eventually “click”. This is how a lot of things work with him. We will struggle through things together until one day he just gets it.

But… It still hasn’t clicked yet.

So, as I was going through my mountains of school materials, workbooks, and math manipulatives (thanks to my retired school teacher father-in-law!) this past weekend…I decided make better use of all of the materials my father-in-law has most graciously given to me. We have workbooks on Logical Thinking, Critical Thinking, Reading Comprehension, oodles of Math Workbooks at various levels, and much, much, more.

I made the tough decision to set aside the fifth grade curriculum for now, in hopes that we will strengthen some of the skills J.J. has the most difficulty with before we eventually return to the curriculum.

I say “tough decision” because I have to admit to myself, my husband, and to my son that things aren’t going well right now. I have to set aside my pride and admit that things just aren’t working out — even with what I consider a near-perfect curriculum. I have to admit that we need to slow down. I have to admit that there are things my son has great difficulty with. He is a very bright child and thrives with tasks and subjects that require memorization, but has troubles when deeper and more critical thinking is involved.

I have to admit… That it’s ok.

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I am so very fortunate that I do homeschool and it is a great privilege to be able to give my son what he needs — a few years ago we needed to jump ahead, and now we need to slow down.

Perhaps things will click and things will speed up again. Perhaps we will slow down to the point where he is on the same grade level with his peers again.

The point is to give him what he really needs. Not to give him what I think he should need…but what he truly needs.

I am so very grateful I have the freedom and opportunity to give that to him.

 

 

Family Supports Waiver

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This past summer J.J. was deemed eligible for help with the things that create the bad days for my Buddy.

Just two months ago, he started receiving services through the Family Supports Waiver, which is through Medicaid. I had applied for this waiver along with two others – the Developmental Disabilities Waiver and the Autism Waiver – when J was first diagnosed with Autism Spectrum Disorder five years ago. We were then placed on the waiting list for each of these, like most, if not all, families are when they first apply.

I was beyond excited when I found out J was being taken off the waiting list and being considered for services that until now, we couldn’t give him because of the high price tag.

Now, here we are a few months, several forms filled out, countless papers signed, many phone calls and meetings and decisions later… And we see two lovely ladies and one kind gentleman each week, at the moment for a combined total of 8 to 10 hours each week. This is a HUGE amount of services, especially when considering we will never see the bills.

J is receiving Music Therapy, Behavioral Support Services, and Participant Assistance and Care through the waiver. So far, Music Therapy has been absolutely incredible!! The Music Therapist works so well with J — she challenges him, yet she makes it fun enough that he doesn’t realize he’s getting pushed to do things he normally wouldn’t care much to do.

We are only in our third week with the Behavioral Therapist — this service took a little longer to get started, but judging by how well she has done these first few weeks, I think she will be an enormous help with J.J. beginning to learn how to identify and handle his emotions in a more appropriate and constructive manner.

The third service, Participant Assistance and Care (PAC), is not a therapeutic service like the other two. Essentially the service provider can work on almost any goals we have for J, but there is not a clear-cut plan of strategies on how to meet the goals. So far, the service provider has been wonderful, kind, and attentive, but it has been a challenge for me to let things play out without a strategic written plan. I want J to get the most out of these services as possible, so it is hard for me to accept the days when it seems like not much was accomplished. I do consider that, perhaps, I simply fail to see the benefits of J’s hours of interaction with these other individuals each week.

These waiver services obviously have several benefits:

  • Therapeutic and Social Services that are free to the clients
  • Eligibility is based on the individual’s disability and need for services, not on income
  • A relatively large budget — I believe we have around $16,000 total for the annual budget

However, I do have some cons, which are primarily personal issues:

  • Having therapists and service providers here for 8 to 10 hours each week greatly cuts into our school hours
  • Having these therapies/services three days each week means I have to keep up on my housework a lot more
  • There is the added stress of having to keep others updated constantly on your child’s progress, inner-workings, household dynamics, etc… One of the beauties of homeschooling is not having to work with others on your child’s life, progress, and education. Now I have to do that, not with his education, but on the goals stated in his Individualized Service Plan (ISP).
  • I can’t wander around in my pajamas all day as often

Basically the cons all add up to lessened flexibility in our day-to-day lives. I can’t just decide on a Monday, Tuesday, or Thursday that we should go to Eagle Creek Park because the weather is beautiful. While it is true that certain tasks to achieve the goals for J have been delegated, I am still gaining much more work and stress because of some of the things listed above.

J.J. already takes a great deal of time to complete his school work each day, it has been extremely difficult to accomplish everything we need to do, and so our school hours often spill over into the weekend.

However, despite all of this, I am welcoming the extra work because (I hope) it is for J.J.’s best interest. I hope these services make a noticeable impact on his behavior and level of independence. We shall see with time.

Have any of you dealt with these services for yourself or someone you know? What has your experience been? As always, I would love to hear from you.

Have a beautiful day!

Five Year Anniversary

This past Sunday, October 12, 2014, was the fifth anniversary of J.J.’s diagnosis of Autism Spectrum Disorder.

I honestly wasn’t sure how to feel… I’m not sure I felt anything besides pure astonishment that five years has already passed since that nine hour day at Riley Children’s Hospital.

Since the diagnosis, my daily life has been filled with one reminder or another of the diagnosis — sometimes it is positive, and sometimes it is negative. There are phenomenally great days, and unbelievably bad days. I am grateful for how much progress J has made, yet I am fearful of what the future may hold for him.

The world in which we live is full of doubt, yet hopefulness in the face of such doubt. I don’t know what the rest of today holds for J…let alone 10 years from now when he will be a legal adult. He could look the Wide World in the eye and challenge it to hold him down. Or he could need assistance in one form or another for the rest of his life.

There is such uncertainty each and every day, that at times I find it insufferable.

Yet…

J has provided me with such an incredible opportunity to grow not just as a mother, but as a human being, and to look at the world with wider eyes, more compassionate eyes, more loving eyes. I believe…I know it is because of him and the kind of child he is.

Today J stands up tall as an eight year old boy and reaches almost up to my shoulders.

Today he has whined and complained about his schoolwork and gotten angry when I insisted he had no choice in the matter. He sighed heavily at the thought of having to drink water before his meals. He has fought with his sister about where to sit on the couch, and he has fought with me about several things just as silly.

However, today J has also given countless hugs and kisses to Ava, Nathan, and I. Today he has cuddled close as we did our reading, and he has worked on writing a lovely and creative story. Today he has emphatically studied nutrition and insisted that he tell me all about it at least three times.

Today has been a roller coaster, as most days are.

I take the bad with the good and insist on remembering more of the good than the bad. Each day can be an exhausting challenge for Nathan and I as his parents, but it is also more rewarding than I could ever express when we think about where the three of us started on this journey. All three of us have come a long way, and we should all feel so very proud.

I know I am certainly so proud of my Buddy, especially…

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He’s pretty darn amazing.

Photo Credit: Nathan Monk

Trying New Things — Changing the Way We Learn

I am consistently humbled and reminded, frequently, that it does not matter how well I plan things out — to-do’s, lesson plans, etc. — it all usually gets tossed to the mighty and strong winds of change and the plans are swiftly swept out the window.

A few days ago, I was approaching a school project with J.J. — he was supposed to write a fictional story. Simple, right? Just the sort of thing an imaginative 7 year old boy should be good at… But it proved to be much more difficult than I anticipated. In all honestly, I should have seen the difficulty coming, as things usually are more difficult than I think they will be. I seem to forget that my son has difficulty focusing his attention — especially if it is something he is not excited about at that very moment in space and time.

I approached the project to the best of my ability: I got out brainstorming sheets, referenced his Basher Creative Writing book, and we discussed, at length, different genres and examples of each one. Upon deciding he wanted to write a “fantasy” story, I pulled out the brainstorming sheets and set to work.

Since J.J. sometimes has difficulty with “bigger picture” thinking, I thought we would conquer the story one part at a time. I figured it would be helpful to start with Character Development. (I realize now how ridiculous it may sound to tell a 7 year old that we are going to work on Character Development…but to be fair I simply asked him who he wanted in the story and what each of their characteristics were). I thought this would go swiftly, especially since he chose to write about the “Bird Family” which he made up and draws about all the time. However, almost every one of my questions was met with an “I don’t know” or simply no answer at all. Yet, after several tries and some input from good ol’ Mom and Dad, J.J. finally had his set of characters for the story.

Yesterday, we tried revisiting the story, this time trying to begin building upon the details and events. Where did the Bird Family live? What did they do? I tried offering big picture questions, detailed questions, suggestions, examples…everything I could think of without giving him any answers or writing the story-line for him. Again, after several tries and many breaks in between…we only had a few new pieces of information for the story.

We need to try new things. We need new strategies. We need to let our writing efforts rest for awhile, in hopes that he will have some sort of interest at a later date. Right now, I think J.J. and I need to focus on things he wants to learn about. Things of his choosing. After all, how is he going to actually learn and retain any new information unless he has some interest in it? How are we going to have a good homeschool experience if I am constantly trying to force him to learn certain things, or be creative in certain ways? It’s simply not going to work. In a strange contrast, the older J.J. gets, the more reasonable, yet more strong-willed he becomes. 

So, I had J.J. compile a list of things he is currently interested in and wants to learn more about. He came up with: Dr. Seuss (as a person and writer), “Horten’s Miraculous Mechanisms” and “Horten’s Incredible Illusions”, Magic and Magicians, Architecture, Somalia, India, Mexico, Aztecs, and Plants.

Quite an interesting list if you ask me!

We will certainly still do lots of math and reading and other “core” requirements. We will just do the bulk of our learning in a different sort of way. It will be largely literature-based as we learn this new information about his topics of choice, but I told him I expect him to be able to pay careful attention when reading, watching, or listening about these topics and to be able to tell me what he just learned.

I estimate the list of topics will take anywhere from a couple of weeks to a full month to explore in-depth. However, I am not pinning any sort of timeline or deadline for it…since I know what happens when I try to put those sorts of requirements on things of this nature. It simply won’t adhere to my expectations. Instead, I am going to try to have fun with this and make it fun for J.J. as well. After all, I’m sure I will learn just as much as him in the process!

This will certainly be an interesting experiment, and I am sincerely looking forward to it!

Challenging Parenthood breeds Meditation Challenge

I think I need some help with centering and balancing my life and my emotions. Do any of you ever feel like that?

I stay at home with my children, all day everyday, and although it is an awesome job…it can be very taxing and stressful and irritating. Whenever I read blogs or articles from other moms that seem to have figured it all out and write these posts about loving the time with their children, I feel frustrated because I so often feel so far from where I should be as a mother. I mean, I’ve been doing it for 7 1/2 years now, shouldn’t I have mastered this gig?

I can just hear experienced mothers laughing hysterically at that last sentence.

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I seriously thought I would have figured things out by now…I sincerely, and quite naively, thought I would have a handle on J.J.’s Autism and have him on the fast track to a “successful” life. Oh, how arrogant the human mind can be. I have a hard enough time caring for my own mind, body, heart…how on Earth can I expect to help another master their own human condition?

Therein lies the great challenge of motherhood.

We mothers (and fathers)… We imperfect beings are responsible for our children’s entire lives and well-being. What an awe-inspiring and equally intimidating challenge that is.

This brings me to the “Meditation Challenge”. I think, and hope, I could greatly benefit from meditation. I have been doing yoga for more than 10 years now, but have not yet given meditation a place in my life. I have thought about it so many times in my life, during good and bad times, but when I sit down to try it out…I find myself feeling so anxious I cannot sit for more than a few minutes and I wind up feeling worse from the sense of failure from not being about to “accomplish” a blissful state.

Now, I’m fully aware that looking at meditation as something to accomplish is not at all the way to go about it. So, perhaps, my first step would be to change my perceptions about meditation, about relaxation, about slowing down… Because I certainly have a difficult time with all of the above. When there is so much to be done every single day, every single moment… I have great difficulty calming my mind and just being in the moment.

So, starting today I will begin attempting to meditate every day for the rest of November. I will try to do some research on perspectives and techniques and see what works for me and I will try to share my findings at least once a week.

Do any of you have any experience with meditation? What works for you? How do you feel when you do it? I would love to hear any tips, tricks, challenges, and stories you would like to share. If you do not have any experience with meditation, maybe you can join me in this challenge and share your thoughts!

What Do You Love About….

What do you Love about those around you?

We need to look at ourselves and those around us and celebrate anything and everything we can. We need to remind ourselves, regularly, what we love about our kids, our spouses, parents, siblings, friends… We genuinely need to learn to be more grateful for what is.

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One thing I love about my son, J.J., is his very active imagination. We have to be very careful about what we let him watch, because he will become a chosen character from the video/movie/documentary and his life will suddenly revolve around the character and things they said or did in what he watched. In cases where this is actually a really cool thing is when he speaks in a British accent like David Attenborough and talks endlessly about animals and little known facts about them. Or there are times when he adopts an Australian accent and speaks like Geoff Lawton, the Permaculturalist, and speaks volumes about establishing a proper “food forest” and its multiple layers.

There are plenty of animated characters he loves as well. Lately he has taken on the identity of Wall-E. I don’t mind this so much, since it is a movie I love and respect…besides, I get to be Eve when he’s Wall-E! J.J. will pretend to collect trash, smash it into a cube, roll around with a cockroach, and, of course, save Earth.

It used to not be so with him. He used to never pretend play about or with anything at all. I find it so amazingly gratifying and refreshing to see his imagination at work these days. I love how special and different he is than other kids his age. I love seeing a new interest or passion become awakened in him and that’s all he wants to do or talk about for days, weeks, or months on end.

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I love the way my daughter, Ava, calls out for “Mama” as if I am the sole keeper of the key to her comfort. I love the way she lights up whenever she hears music and begins to dance, clap, bob her head, or sway to the music without restraint. I love seeing her scoop up her stuffed animals and love them so tenderly — giving ample hugs and kisses so the still beings know how much they are loved and appreciated. I even secretly love the way she refuses to sit in her booster seat to eat at times and wants me to hold her — because she would rather be close in my arms than sit like the big girl she so often wants to be.

I have a love-hate relationship with each of my children’s very, very strong wills. Both are, and always have been, very sure of themselves and how they think the world should work. I sincerely appreciate this quality in them, as it will serve them well when they are older and I feel confident they will grow to be strong adults that are capable of making big, positive waves in the world. Yet now, as they are still young and Nathan and I are charged with their guidance in this crazy world…the job is not always that easy when we are at odds with our views on how things should go. And although it can be difficult to remember in heated moments, I know that all the hard work with their strong characters will pay off. Really, it already pays off when I sit back and watch when they take charge of a situation…it makes me so proud of them.

The point is that despite their ability to test patience, deprive me of sleep, and frankly make me want to pull my hair out sometimes…both of my children are so wonderful in their own unique ways. It pays to remind oneself of the virtues within those you live and love with. In the end it could make you happier and appreciate them even more.

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Now, to make the sharing of Love and Appreciation complete… What do I love about my husband, Nathan? Oh, Dear…so many things! I love that he is so smart and passionate and capable of doing just about anything he tries. He has an insatiable thirst for knowledge about life and the world, and he is always striving for better. He is always honest with me, which is great…even if I don’t appreciate it in the moment. More than anything, I love his drive to care for his family and his intense moral standards. I love and respect him so much… He always continues to surprise me with how wonderful and thoughtful he is.

I am so fortunate to have such an amazing family, and I strive to remind myself of this everyday.

So, tell me… What do you Love about those you care for?