Saturday, October 17, 2015

Our Special Needs Journey:Part 26 - So Much is Happening

(Our apple orchard visit seemed a good times to attempt a photo of all 4 kids but Bruce wanted to be held so I ended up in the photo (and I look super gross here), but my hubby was hard at work so he wasn't there and so we still haven't had a photo of all 6 of us in like 2 years.)

We're in a good place right now; albeit a very, very, overwhelmingly busy place.  Sundays are church and softball, Mondays Bruce has speech, Taylor has Behavior & Skills therapy, Dean & Julia see their skills therapists, then Julia has a 3 hour Adolescent Day Treatment class at Fraser (if you're counting that's 7 hours of therapy on Monday alone), I go to a 3 hour DBT class then the chiro, Bruce has an in home Behavioral & Occupational therapist here, then the girls and I go to BSF.  Tuesdays I have MOPS in the morning then Dean has Individual Skills Therapy, Julia has speech and a Social Skills group and then Karate.

Wednesdays I have a standing talk therapy appointment, the boys both have Occupational Therapy at Fraser, Julia has 3 more hours of Day Treatment, then the kids all go to church for Awana and Youth Group.  Thursdays Dean has an 8 am Social Skills Group then Julia heads to coop classes for the day, then Dan gets Julia from co-op, heads to Taylor's Social Skills Group in Eden Prairie, then to Karate.  Fridays Bruce has an ECFE Special Ed class and Saturdays Julia has Karate.  Somewhere in there we homeschool, attempt to sleep, and fit in doctor appointments. And by attempt to sleep I mean it is past 4 am, I haven't blogged in months, and still have so much to work on!

So the total hours of therapies alone is 24 and a half hours for the lot of us. The aggressive therapy is necessary right now, especially for Julia.  She's not "worse" per se but the gap between her life skills and where her peers are is greater now. Functioning a year or 2 behind at 7 years old is very different than functioning 5 to 7 years behind at 14 years old. It's getting to be a pretty big deal. Sigh. Autism is harder than I was ever prepared for.

I'm glad she's getting the additional Autism Adolescent Day Treatment (6 hours a week) but I am sad her skill-set is so low that she qualifies.  It's hard to watch her struggle so much in every day life and with her peers. I am frustrated AND want to cry on a daily basis.  I'm not a very nice mom and I don't mean to be so critical, there just is such a drain on my patience.  All my kids are amazing but I do run on empty many days.

On the upside, she's really loving youth group and is even on a Junior-Senior High Youth Retreat right now! (Don't get me started on all my fears - like getting her to take her meds without an adult prompting and supervising.) She's even making friends in there and in her new co-op! This is really exciting to see. I'm bummed how bad her skin picking has become - her face bleeds everywhere and she has so many scabs.

She performed in the Diamond National Karate Tournament.  It's the largest in the US and 5th largest in the world.  She works so hard despite her challenges.  She not only struggles to focus and not get distracted but she has a problem where she physically cannot control her body movements frequently.  So her performance is not as crisp and clean as others but she's really persistent.  I'm very proud - she's even able to move up to the sparring class now, which we held off on due to safety concerns before and bow she has earned it.

I think one of the most significant things right now is finding out that Taylor is pre-diabetic, insulin resistant and likely has PCOS (poly cystic ovarian syndrome).  We were sent back to her endocrinologist due to her excessive hunger, thirst, weight gain, extreme body odor, acne, and itching.  Her fasting labs showed both very high levels of insulin and Free Testosterone hormone. I haven't had time yet to process what her new diet will look like but I am trying to increase her physical activity.  In 6 months if her insulin is still elevated and she has not gotten her period (she had it at age 5-8 then stopped) she will need to start a medication (one that works for both).

At her recent visit with her Developmental Pediatrician we increased her ADHD meds (and for Dean as well).  [I'm not interested in being attacked for my choice to medicate my children.  It is done prayerfully and out of love - wanting what helps them have fewer struggles. I actually don't even know an "overmedicated child done so by parents who are too lazy to parent properly."] Even constantly supervised she is always distracted and not accomplishing anything. And I mean ALWAYS.  She does everything so slowly and just spaces out a lot. She cannot even explain what she's thinking about or being distracted by. As frustrating as this is for me, I can't imagine how frustrating it is for HER.  I think her multiple learning disabilities are playing a role as well when it comes to her studies.

But Taylor has been making friends in youth group at church and was baptized this month.  Her tantrums are less frequent and severe and she's really made huge progress in therapy.  She's functioning at an age appropriate level and some of her sensory issues are improving.  Her cholesterol is even down a little.  Her IBS seems to be under control now that we determined source of her tummy aches and found the right meds.

Julia had a sleep study done in June that confirmed her sleep apnea as well as indicating she may have narcolepsy.  Stimulants and a Narcoleptic label are not things we want to happen right now and were told she needs to have her tonsils and adenoids removed and then repeat the sleep study.

Her current ENT doctor is complacent, not wanting to do the surgery and saying to take a wait and see approach. She already had a Double Turbine Reduction surgery in April and has had multiple nasal sprays for years, so the Ped suggested getting a second opinion.

The ENT at Children's hospital (the one Bruce sees) was quick to agree a tonsillectomy and adenoidectomy were a great first step in treating her sleep apnea.  Since I had to cancel that whole day of appointments anyway, I scheduled her surgery for the same day as Bruce.  They are happening an hour apart and will be roomed next to each other so I can attend to both children at the same time. 

Bruce is having oral surgery because I'm a terrible mom.  We are working on potty training and weaning from nursing. His tantrums are becoming pretty epic. Yesterday he got so upset that he made his nose bleed just from screaming! He has begun a behavioral therapy just for this.  I know he has a diagnosis and all that but how can I NOT feel like an epic failure as a mom?

I've finally recovered from my 2 D&C surgeries and getting back to normal and into the swing of things.  It took 42 days to complete the miscarriage process and I was in so much pain, so tired, and just so drained.  The heaviness, intensity, and frequency of the grief has improved and I was even able to celebrate Bentlee's 5th Heavenly Birthday with joy as a family.  We continued our tradition of coming together to eat pink cupcakes!

In spite of our busy schedule, we've managed to squeeze in as much fun as possible to make the most of the last of summer and of Fall, my favorite season! 

We went on an AMAZING camping trip over Labor Day weekend to close out the summer.  We went with friends which made things even more fun - and the hike to the waterfall was well worth it! Although, climbing like 100 feet to the top of the cliffs was decidedly NOT.

Bruce saw these Bat symbols drawn in the dirt on our hike and was convinced they were made just for him.

I was feeling well enough post-op to enjoy a ladies night (with Tammy and Katie) before Katie had to head back to Canada after a summer here. It was kinda like summer camp - her here all the time and Thuy working max hours; I'm going through withdrawal!

Yes, he fell asleep with an orange in his mouth!

 The boys were so impressed with Grampa's motorcycle!

Soaking up the last of summer at the Drive-In movie theatre. 

 Bruce is REALLY into Batman right now and dresses up daily.

Gramma and Grampa took us all bowling and Bruce and Dean totally schooled their grandparents!

We won these tickets for free rides at Nick U and Sea Life - it was a long, exhausting day for the mommies but the kiddos sure had fun!

We heard this was the last year that the Minnesota Renaissance Festival was being held for awhile, so of course we had to go.  Bruce stole my sunglasses for the day.

Our roommate, Elijah (yeah, the one who PCAs for the kids), got a kitten and Bruce's love for Luna is aggressive and one-sided I'm afraid.

I love this not just because Bruce is so damn cute here, but also because he really never sleeps and I needed photo evidence!

Dean has been learning human anatomy in our homeschool and is oddly into creating the human body. Bruce only takes selfies with Thuy - here they are at the zoo.

Glow in the dark Sands Alive sensory play.

Elijah may have had the mot fun when we took the kids to the Works Museum today!

So my homemade playdough started with pumpkin spice for fall but kinda spiraled from there.
So I made rainbow play-doh: -vanilla coconut -pumpkin pie -grape glitter -blue spearmint -green is Christmas cookie -lemon -orange tangerine -black cherry -pink lemonade.

This was one of the best dates ever! ! Dan and I joined a few other Pepsi employees in the Pepsi Suite at the Twins game.  They won the game, we got free food, and had an AMAZING view! So so cool. And seriously, my husband is such a stud! I picked a good one!

Going to The Twin Cities Harvest Festival and Corn Maze has become our annual tradition.  This year we were joined by my mom, dad, and both my brothers!We love the corn pit but Bruce is so allergic he can't even play with the dried corn so I distracted him with the petting zoo.  Grampa took him to hold the bunnies.

On the tractor with Gramma.

He could've hung out in that petting zoo all day!

The apple orchard is one of my favorite things all year.  We picked apples and raspberries, chose our pumpkins, had apple cider donuts and apple juice icees, rode on tractor and had a wonderful time!