Wednesday, August 30, 2023

Long time update!

 I pretty much forgot that this blog existed, and although I doubt anyone will ever read this, I thought it might be fun to put some life updates on here.

Since I last updated here, I:

1) Got a great autism therapist for my oldest son, who helped him grow and develop into an amazing young man.

2) Transitioned my oldest son from regular homeschooling to some online schooling with just a couple of subjects done with me. He is now almost entirely independent with schoolwork!

3) Got my oldest daughter diagnosed with ADHD and dyslexia and got her meds for ADHD and a math tutor to help us keep up and make progress. It took several years of hard work but I taught her to read and she loves books! I also found her a great therapist who uses art to help her with emotional regulation. I feel that with so many siblings with special needs, she needs her own support.

4) Got my student loans discharged by the DOE based on my income and autism diagnosis!

5) Got my younger daughter through years of ABA, speech, and occupational therapy. Got her sleeping meds and just finally got her to sometimes sleep through the night in her own bed. 

7) Had the bad kind of covid and survived. It took me two years to finally get over it!

6) Developed a disorder called diabetes insipidus (not related to sugar or insulin), and after almost a year got diagnosed and treated. I will have it for the rest of my life but it's usually easily managed with pills. It does limit the kinds of workouts I can do and I have to be careful about staying out of the heat, but otherwise I am fine!

8) Had my second baby boy! Teddy is healthy and happy!

9) Had my third son Robert McKenzie! We survived three weeks of Robert in the NICU. Since he came home, we've taken him to the regular pediatrician, the developmental pediatrician, the audiologist, the physiatrist, he sees an OT, PT, and DI through EI. He also does outpatient therapy through our insurance and gets PT, OT, speech and feeding therapy. He began seeing a GI and recently had a g tube placed. We have lots of case managers and a couple of social workers as well. Managing Robert's medical care has been almost a full time job this past year.

10) Did countless house projects. Some of the big ones were replacing our fence, finishing the basement (this one is almost complete), redoing our half bath and moving everyone around so that everyone has their own bedroom.

11) Got the best dog ever and trained him pretty well :) My labradoodle Bluey is a great comforter when things get tough.

12) Applied for respite care and finally got it after six months of paperwork and waiting. We now have assistance towards hiring an occasional babysitter and I have weekly cleaning help!

13) Worked on becoming a better writer. Now have drafts for a tv script, outlines for multiple film scripts, a novel, countless short stories and articles, and several children's books.

14) Kept up my job, never missed a deadline, even when in the hospital giving birth!

15) Celebrating all holidays, birthday, and special occasions.

16) Figured out how to afford to go to Disney on the regular. Had awesome vacations and memories.

17) Got handicap placards for W and R.

Going forward, I have so many hopes and dreams. I may not reach all of these goals, but here they are:

1) Support my oldest son on his journey toward adulthood. This means having him take the SAT/ACT, helping him achieve great grades in school by giving him whatever support he needs, making sure he is in challenging classes with good teachers, making sure he has appropriate supports and accommodations where necessary, helping him get his driver's license, and just generally making sure that he knows everything he needs to know in order to be a good human.

2) Focus on academics and bonding with my girls. My older daughter has learning disabilities and my younger daughter has moderate autism, so school is difficult for them. I want to make sure that even while we are trying our best to meet goals and get them up to grade level with academics, I also take time to feed them spiritually and creatively. They are both talented with art and music and I want to make sure that they have the opportunities to grow in those areas. Learn French with Stella.

3) My toddler Teddy is pretty happy go lucky, for him my goals are simple, potty trained, tot schooled, able to buckle himself into the car and get dressed on his own!

4) For Robert we are pursuing lots of options, including home nursing care for night tube feeding, getting fitted with thumb and ankle braces, getting a stander and then later a gait trainer, researching more about treatments like stem cell therapies, getting him into a medical day care program that has even better therapies and equipment to help him make progress, and getting him on medicaid to help pay for his extra medical expenses. 

5) Finish up all the little odds and ends and projects around the house, and organize all the things so that everything has a home. Along with this I want to have better routines for housework and upkeep, and train my kids so that they can help with some of the household maintenance. 

6) Do a couple of larger projects, like finishing the basement steps, and as a stretch goal I would love to add on a large family room and a handicap accessible bathroom.

7) Have more regular date nights with my husband.

8) Have more routines overall, and build in more special times with my kids and all my family.

9) Take some really awesome trips. Go to Japan with Henry, go to France with Stella.

10) Figure out how to get my writing out in to the world. Have a plan in place to get paid for something I've written by the time I'm forty.

11) Buy a van that fits our whole family and any equipment Robert needs.

12) Figure out how to pay for the kids who want to go to college, (scholarships, make extra $).