A family's story

Posts tagged ‘Change’

Breaking Up is Hard to Do

I’m going to start by saying that I am terrible about ending relationships. Awful. I have let far too many go on for far too long. Many times, the situation has gotten toxic and out of hand before I take action. I dislike conflict. I abhor confrontation. And change, change makes me feel so…so…anxious. So much so, that I’ll tolerate a situation or relationship or job for much longer than any sane individual should.

While we love our ABA therapists, we are not very happy with our coordinator/director. There is little communication. I actually sent out the summer schedule this year. I had to send emails upon emails upon emails to her to get any type of answer. We often “agree to disagree”. I get brief emails with directions. We rarely talk face to face, and when we do, it feels like I’m being chastised or corrected…like I don’t know what I’m doing. (In regards to ABA, that may be true, but I DO know my son.)

I was referred to another BCBA from someone. This BCBA consults on all of her clients cases. She meets with the team once a month–without being prompted by the parents. I talked with her. I read her resume and background. I talked to a current client. I love her approach of using traditional ABA concepts, but also incorporating other methods of therapy and education. She takes our insurance, too. I can’t find anything wrong with the new BCBA.(Except that she lives in the city, so we’ll have the same issue of her having to travel out here to run meetings and such.)

And yet…I have dragged my feet for a month on this. I don’t know how to let go of our current provider. Logically, I know it’s business. Our current provider may be frustrated or disappointed in losing a client, but I know she’ll be able to find others. But my emotions get the best of me…and my resistance to change does, as well. I know this situation. We function within it…even if it may not be the best one out there, he is making progress. But I also know that there’s got to be a better way.

I can’t figure out what is causing me to be so resistant. Change, I guess. Change is hard. Change is uncomfortable. I like the same old same old. Even if it’s not great. Also, I worry about losing our therapists that Tate has come to know so well…although, I have it on good authority that the new BCBA works with both of our main therapists…so there is a possibility that he’ll have at least one of them going forward.

In the end, though, I need to do what is right for Tate. I will have to switch providers. Even though it puts me in an awkward place. Pushes me out of my comfort zone. I know he has to deal with that every day, I think I can manage it for this.

Life is a Roller Coaster

One of my favorite movie scenes of all time is in the original Parenthood movie. The elderly grandmother talks about how some people go around life as if it were a carousel, it predictably goes round and round, but doesn’t have much excitement. There are others who choose to ride the roller coaster, messy, unpredictable, but much more fun and adventurous. With the chaos going on around Steve Martin’s character, the camera shifts to make it appear that he’s on a roller coaster…and he looks pained…but his wife looks calm and is enjoying the ride. It is an excellent example of a metaphor.

Lately, I feel like the Steve Martin character. We are riding a humdinger of a roller coaster around here…complete with ups, downs, twists, and loads of unpredictable excitement. I am grimacing much of the time….I feel uneasy. I wish I could get off of this ride and opt for a little time on that carousel…but I know that is just not our ride.

Last week was the last day of the regular school year. I could feel myself inching up, up, up the rungs of the coaster. If we can just get through this ride…it will be easier. Only one more day…only one more hour…. And then the report cards came home. Words like “still struggles” “regression”, and “anxiety” peppered the boys’ notes and IEP progress reports. The free-fall of the coaster came. A pit formed in my stomach. Some screaming relieved the pressure as my own anxiety and concern peaked.

To be fair, we also saw phrases like, “works and tries hard”, “met goal”, and “really improving” on both boys’ reports. Both boys also achieved good grades in their respective favorite subject matter (Jake: science, social studies and art) (Tate: math). The coaster swerved to the side, promising a slightly smoother ride than I was imagining…I could catch my breath. The tension in my shoulders released. I felt the sun shine on my back.

Jake went to visit his grandparents and spend some time with his cousins at my in-laws other home in a resort area. He was missed. Tate and Cole bickered and fought and hit and whined a lot while Jake was gone. They missed their brother…the peacemaker. The one who helps keep life in our household at an even pitch. I missed him, too. I never realized how much I depended on Jake for help with his brothers…whether it was to mitigate some bickering or to fetch a snack or beverage for them while I was busy. I had constant demands on my attention, and I was feeling woozy. It was as if the roller coaster was spinning me round and round and upside down. I felt overwhelmed and frazzled. I clawed at, and clenched the safety bar with my hands…not letting go for dear life.

Hubz has continued to be swamped at the office. His absence around the house is hard, anway, but it adds a layer of complexity and difficulty when we’re in a state of flux and routine is shot and the boys are struggling to stay “together”. Hubz and I barely had time for each other several nights last week because he worked until 7 or 8 and then had to get online once he was home. Or he just needed to decompress and didn’t need to hear me rambling on and on about the frustrations of life with 2 boys who couldn’t agree on which tv show to watch that night. Again, that roller coaster threw me for a loop. I struggled to keep my balance.

Like any ride, however, there is promise for smooth sailing. Today, Jake started summer school. Tate starts ESY on Wednesday. We finally got Tate’s summer ABA schedule. It is still a bit sketchy, but something that I can at least use to walk Tate through his new routine. We’re going to make a visual schedule today. Cole is going to attend preschool day camp starting tomorrow, as well, so he won’t be as bored at home, either. That roller coaster slowed down a bit. We’re just coasting now…and the pit is gone from my stomach. I’m able to take a deep breath and enjoy some more of the scenery. I can smile and let some of my guard down. Not all of it, as I know that the next hill is coming…but today, in this moment, I can breathe and release my death-grip from the safety bar….

End of Year Anxiety

The anxiety beast is running rampant through our house right now. With 3 weeks and one hour of school in front of my boys, there is a complete sense of the unknown in front of us. Jake feels it. Tate feels it. I feel it…both mine and theirs.

I remember being in a state of immense joy when school was almost over for the summer. No more teachers, no more books…no more principal’s dirty looks….and all that jazz. Except for my kids. The end of the school year means change. And change, well, change means anxiety. Lots of it. 

Tate has several little transitions to get through as we approach summer. First, his teacher is out of school right now after a medical  procedure. She returns next week. He has her for 2 weeks, then, and then has a week break, and then starts up ESY part-time. He also will have ABA in the afternoons…and most likely a new therapist on weekday mornings to fill the session times that his afternoon therapists cannot manage. He’s been sleeping like a baby…like a newborn baby. Up a lot, whining, crying…it’s been exhausting.

As the school year winds down, items are coming off of walls, expected wall adornments are put away for the summer, and everywhere one walks, there’s a sense of moving on, of routine change and the like. Tate has been scripting about his aide “breaking” his schedule. Turns out, she was helping to clear some of the posters and his visual schedule ripped. *sigh* (She put it back together…thankfully she knows how much he relies on it!!)

Jake is having the most anxiety about his teacher for fourth grade. He keeps asking his third grade teacher to be his fourth grade one. While sweet, it shows how anxious he is about the change. Thankfully, though, he will get to meet his new teacher before the end of the year so that we can visit her classroom a few times over the summer. He keeps asking what happens next. I can only go over the next few weeks so many times before I get short with him and lose my temper. Then I feel guilty…until he asks me, yet again, what comes next.

I am anxious about how the change in routine from school, to summer (for a week), to summer school, to ESY, to day camp, to therapy, to play dates, to random summer activities will go. I am not as rigid as my children, but the changes in routine make me a little nervous, too. I like to know what’s coming…and, well, one never quite knows..especially when children are involved.

So, we’re trying to muddle along over the next couple of weeks…none of which is really a typical week. This week the boys have Friday off for an inservice day. Next Wednesday they have early release. The following Monday is Memorial Day, and the last week they have a full day of school on Monday and our obligatory hour on Tuesday. 

Throw in a handful of end-of-the year activities like field trips (for both of my older two boys), a spring music concert for Tate (still not sure if we should go), Jake’s bridging ceremony for Cub Scouts (Webelo’s here we come!!) and we’re all out of whack. 

Maybe it’s time I start doing yoga again…I feel my blood pressure rising, my heart rate increasing, and my breathing race as I start to think about all that’s coming our way in the next 4 weeks….eeek!!!

 

Happy Dance

I got some of the best news today. After 6 months of back and forth with the HR representative at his company, Hubz got word that his insurance plan is being updated. The company is coming out of the stone ages, and will now cover ABA therapy for autistic children, regardless of age. That is correct. No age limits will be placed on ABA therapy. Hence, Tate will be able to continue to receive therapy after his 7th birthday next month–which was a huge burden of worry for all of us.

Hubz and I are not “squeaky wheel” types. We much prefer to mind our own business, put our heads down and get our jobs done. However, when the welfare of our child is in play, well, we find inner strength that neither of us knew existed. I guess our kids do bring out the best in us at times.

And…now that we know that he will have coverage of ABA therapy, we are thinking about changing ABA providers. I know…I know…we already have 18 months under our belts with the current provider. However, let’s just say that there are some huge gaps and frustrations (lack of communication with the director, absence of team meetings, gaps in hours requested, etc…) that are driving our thought process. It will be a pain. It will not be easy. But something tells me that there HAS to be a more comprehensive provider out there. There has to be. Also? It is very eye-opening when a current therapist comes to you and says that, off-the-record, she has an ethical dilemma with the way that your child’s therapy is being handled…and that she feels he is being short-changed in the therapy department. Yikes.

Hubz and I have some research to do, some decisions to make, and some butts to kick…but rest assured, we will do what we think is best for our kid. That much I can guarantee. Now, off to do some more of my dance of joy….truly feel like I’m walking on sunshine here. (Ironic, since it’s 20 degrees here today.)

A Letter To Tate’s Team

This week wraps another chapter of Tate’s life. I have a lump in my throat just thinking about it…For the past 3 years, Tate has been in our district’s Early Childhood Education Program. On Friday, we move from the sheltered hallway of his current school to the hallways of our home school.

Dear [ Tate’s Amazing Team ],

Three years ago we gave you our precious little boy. He was mostly non-verbal (pre-verbal, as some might say), shut-in his world, and very, very frightened. (So were we…). As we handed him off to you, your kind words and reassurances, while directed at him, were so much more for our benefit, as well…and we thank you.

In your caring world, Tate began to blossom. He started to talk. First with more words. Then he strung the words to form phrases. Then sentences. He started to communicate needs and wants. He began to master basic skills. He began to learn.

While cryptic to us at first, your heedings of “something neurological” ignighted a fire within us. We’d always suspected more than a developmental delay. Your persistence that we “follow-up with a pediatrician” propelled us into an evaluation. And his eventual diagnosis.

You have all worked so hard with Tate. You broke through the inattention, you worked around the impulsiveness, you recognized his dysregulation and helped him with sensory breaks and redirection. You modeled behavior, encouraged play and socialization. When he said “I can’t”, you said, “oh, yes you can”.

You have always worked with us. I know that our requests are few of many you encounter, but you never dismissed them. You met us where we wanted…or at least half-way. You always listened to us. You always followed up with a question or request You never made us, or our child, feel like less.

Tate has enjoyed his 3 years in your care. He really loves school–and we have you to thank for that. You have made him feel cared about, made him feel like he’s a part of something. You have helped instill a love of learning in him, even though a classroom is a very difficult place for Tate.

After three years of strong effort, endless teaching, modeling, and support, “thank you” doesn’t seem like much. We gave you our little baby boy…and in turn, you’ve given us hope, encouragement, support, and a boy who’s grown in so many ways. I am not scared of the future, because I know what a strong foundation you have helped us lay for him.

So, while it doesn’t seem like much, thank you is all we’ve got. And please know that we mean it from the bottom of our hearts.

Many thanks and best wishes,
Tate’s Family

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