Therapy Headache

I’m a bitter autism mom right now. Sometimes I feel so stupid. I’m not smart enough to understand all the legalities or where to look or find all the possible resources available for our son. I’ll see that someone got off a waiting list and into a therapy or activity or program, and I’ll think to myself is that something we should get J into, would he enjoy it, would it be beneficial, would it help in someway possible? In the same thought sequence, I feel that we have explored every option available for J or that we think J would enjoy or just in the very least tolerate for some time. Hence our pulling him from the AllPlay Miracle Baseball League this summer. It was taking Lance more work just to keep him in the dugout to be apart of the team than was worth the effort of the struggle.

Today I see from another mom on a social  group I’m on with parents of autistic children, that she was able to get her child Medicaid.  Now they are finally able to start pursuing ABA therapy. And though I’m honestly happy for her and her child, I am extremely jealous. Jealous that for another child this therapy may work for them, that they may have a program that excels, that they’ll start making progress. I’m jealous because they were able to get appropriate coverage to cover the expenses of this therapy. I’m jealous basically because I wanted this program to so desperately work for J, for us and it just was not able to. I wanted to start seeing progress in J from being in sessions 4 times a week for over 2 months, for us to be taught how to incorporate the therapy when the therapists weren’t here to improve/increase our involvement and J’s progress. I want it to not pillage our savings in order to provide a service that we wouldn’t be able to afford after a year because we don’t qualify for Medicaid. None of this happened.

So we took 7 months off, no therapy outside what school provided. I wonder from time to time if we would have stuck with ABA would we be better off, would J be farther along? Maybe, but I’m glad we choose this route. We are blessed to be in and have the school system we do and school staff that want to help us as much as we want to help them with J’s growth and development.

As a reminder to myself that even though not everything works out the way I want them to for J, our family has so much to be thankful for. Remembering these things are important. I’m thankful for the roof over our head, the delicious food Lance makes and the clothes on our back. Thankful that Lance and I have great careers, with employers that have always been able to work with our crazy schedule. Thankful that we have extra to spend on outings and adventures with J. I’m thankful that we have each other and our adorable 6 year old. Thankful for our supportive and amazing family, friends and co-workers. Lastly, I’m thankful that Parks and Rec is on Netflix for my viewing pleasure with a glass of wine and I have plenty of books to read when it’s finally time to go to bed.

I’m always going to be hard on myself and what I feel like I should and can be doing for J. But any special needs parent, including myself, has to remember that if you are doing your best, giving it your all (which if you’re a SEP you usually are), that is all you can ask of yourself. It doesn’t even have to be every day, we are all human, but since giving up isn’t in our vocabulary with our children, take it one day at a time. The hubby and I will continue to teach ourselves a type of ABA therapy called ABBLES-R here at home that J’s resource/special education teacher uses and that J has really progressed so well with this past year. We will keep exploring all our options for new therapies, going back to past therapies used, seeking new activities and taking adventures daily, even if it’s just to Costco. They sure all won’t be sugar coated rainbows and sunshine days but they’ll have glimpses, some that will last longer than others and that is better than not having any at all.

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3 Weeks In

Haven’t blogged for awhile, not for lack of wanting to or trying to. I’ve written plenty in the past weeks but mostly lists, lists and more lists of chores that need to be done, errands that need to be run, notes at the therapy sessions we have had and 2 actual journal entries. However, just not able to transfer those over to share with everyone.

Why you may ask? Because this new summer schedule is crazy and we are more exhausted than we thought we would ever be.

J is in constant motion, always moving, traveling from one part of the house to another and back again. He is not the type of kid you can just leave alone for periods of time or tell him to go play with his toys, we need to keep an eye and ear out for him at all times. We definitely aren’t allowed to be passive parents but present at all times, using moments throughout the day to work on skills. Right now he loves to work out on our elliptical, listen to his books on CD and play in his pool but as his interests are limited to the mentioned he quickly becomes bored. He’ll then start asking for iPad time or to watch a movie but since both are controlled and the answer he may get is a no, he can get restless, grumpy and aggressive. I can’t blame him though, I get bored myself staying home all day at times. So J and I will go on car rides and visit the library after our weekly therapy sessions. Lance and J will run errands, get groceries and drive around. Then we plan adventures for the weekends that can allow him to at least be in the presence of other people even if he doesn’t necessarily want to interact with them. I’m trying to plan play dates, had one and it was okay as J just doesn’t have interest in his peers and Lance wants to try taking him to playgrounds for some fun and possible interaction.

So when we aren’t home with J, we are getting up early for an 11 to 12 hour work day, coming home to spend a few quick hours with each other and have dinner before doing any house chores and going to bed.  We also work in the evenings after our days home with J to catch up on work and make up hours.

With this new schedule we have noticed that J is having a little bit of an attachment issue with us both as he is with one parent all day and the other parent the following day until the weekend. He has a reprieve from both of us on Mondays when he is with Grandma. Therefore, when we are all together we are unable to play hide-and-seek because it literally breaks him to see us gone from where he just saw us, complete meltdown.

Overall, this is not easy, this schedule is tough. Our individual days at home with J are not “days off” or “a vacation day”. We are having at-home therapy sessions, working on skills: vocal, motor, social, imitation, education (colors, numbers, letters, his name etc.) and play. We are trying to teach him patience and how to wait by teaching him time. We are trying to teach him nice touches, yet again, when he is upset and becomes aggressive. We are also teaching ourselves on methods his school used last year to have some consistency, reading books about how to motivate and capture his attention, and looking for activities that J may enjoy but can be educational too.

If his new schedule is tough on us, I can only image how tough it is on J and can only assume how he is processing it, mostly by his non-verbal communication actions.

Don’t get me completely wrong, we have great moments that are completely perfect with J. We have breakthroughs with our at-home therapy sessions where he shows real progress, so far all therapy sessions at the clinic have gone really well and I’m constantly learning from them on how to alter what I’m doing at home for more interaction with J and we have relaxation moments with J; snuggles while watching a movie or listening to his giggles of a clip he’ll watch over and over again on PBS or seeing his excitement on his face when we get to go bye-bye. It isn’t all bad, just much harder than we thought it was going to be.

My motto come into play again, One Day At A Time and remember to breathe and do I have wine?

No Daycare No Problem

I originally started stressing about how care for J would work this summer prior to last Christmas. With Lance and I both working full time, 40 hour weeks, I was let’s say FREAKING OUT! I was told quite pointedly, from the hubby, that I had to wait to freak out about any of it until after the new year. So January 2, I immediately started researching and pursuing our options aka FREAKING OUT!

We weren’t going to be able to take J back to his previous daycare provider because even though they were great with him when he was in preschool they wouldn’t have the appropriate staff to watch after him now, wouldn’t have the resources for his needs, wouldn’t have the necessary learning techniques that both school and we have been working on all year and the biggest factor is J isn’t yet potty trained & I know this was becoming an issue before we left last year for Kindergarten.

I researched therapy/daycare centers that specialized in autism. Managed to find 4 options but there were road blocks with each one. The first option didn’t provide full time services any longer, just two 2 to 3 hours sessions each week, that wasn’t going to help. The second option didn’t provide services for non-verbal autism (what the heck?!?!). The third looked promising, a full day/weekly service that was affordable even without insurance being a factor. The catch was a student/staff ratio of 6 to 1. J is a 1 to 1 kiddo, sometimes even a 2 to 1 depending on the circumstances. Plus they focused on workstations as groups and though J gets some of this at school he once again has that 1 on 1 guidance to keep him to the task. Without support to have him focus on other work, he would be able to wander around (or worst just giving him his iPad to get him to sit which would then be unstructured and who knows how unlimited). So this wasn’t sounding very promising to me. Lastly, our fourth option which I was looking forward to attempting was not to be either. Though the hours for the service were for only 6 hours during the day, I thought Lance and I could make it work. The kiddos participate in activities with 1 on 1 support all the time. Off to a good start. HARD STOP!  I found out that a lot of these activities would be outings such as going to the zoo, going swimming, picnics, etc. This would become an issue for J when it would be time to leave and an issue for me it I wasn’t comfortable with him participating in an activity without our supervision (such as swimming). The other kicker was the program only wanted kiddos to be enrolled for a two week period out of the 6 or 8 weeks it lasted to allow for as many children to attend as possible. This all ended the pursuit for a center/facility to provide care for J.

Back in the beginning I had wondered if I could use FMLA (Family Medical Leave Act), but we didn’t know if autism would be a qualifying condition with our situation . I left it alone until I had exhausted all of our options. Since nothing panned out there, filing for FMLA was a no brainer. I would either attempt and get approved or not and start exploring other options, I didn’t really want to consider looking for a new job.

The process was easier than I thought it would be, but maybe that is because I lucked out with a good employer. The only big wait was for J’s doctor to complete her section of the FMLA paperwork but that really only took 3 days. One day after submitting everything to HR I was approved for complete leave up to 11 weeks. Presenting to my boss was a little nerve rattling. I didn’t want him to feel like I was just bowing out of work for the summer; I still wanted to work, be a team player and continue my career. A similar discussion was held with Lance’s boss and HR. Instead of him filing for FMLA, they worked out a schedule where he will work three 12 hour days with a little work on the weekends. This allowed me to work 30 hours a week, plus doing a little at night or on the weekends if I’m able and not leaving my team in a lurch over the summer months.

To officially acknowledge the severity of our sons autism, that ‘normal’ daycare is not an option and with no sufficient options available to care for him is difficult because it truly shows just how different out lives are from typical families. I can’t begin to describe the relief I experience when this gigantic task has been completed. We are so thankful to our employers for understanding the different challenges we have with an autistic child and their willingness to work with our schedules to provide what is best for him.

We are looking forward to this summer. Since J will not be receiving any therapy from the school district during this time, we have lined up a weekly visit back to the Munroe Meyer Institute to see a speech pathologist and occupational therapist. Both we have worked with before and I am so looking forward to all the ideas and techniques we can work on (such as dressing, overall communication with his augmented device and ways to strengthen his fine motor skills) to facilitate  progress with J. We will also have 4 hours of ESY (Extended School Year) with J’s special needs teacher and school physiologist at our home between June and July as check-ins to provide support, additional techniques and methods to try with things we are working with J on and to make sure he says on track for expectations for 1st grade (1ST GRADE!!!)

We have about a week under our belt of this new schedule as J’s last day of school was May 25th, so far so good. As with all changes it will take J some time to get used to and Lance and I as well. Our main worry is keeping him busy, engaged and to some degree entertained so he doesn’t get bored as it is easy for him to become since his preferences are limited.

This is definitely going to be an adventure!

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