So it's mid October. And it's been a rough school year for the kids. Especially Luke. This is not good news.
I hesitate to write this, because there's so much personal stuff going on with him. Basically 6th grade was a tough adjustment for him--new school, youngest and smallest of the school, new teachers and classes and students from another school. He did make a couple new friends but it wasn't enough to offset the things he can't cope with.
Basically middle school was more than he could process. He started hating school more and more everyday. Mark had a talk with him about what he hated specifically--the noise, the annoying kids, annoying teachers, the crowds in the hall, switching classes at far distances, band, the bus. For one class in particular, we got him into a different class with a teacher who was a better fit. We started driving him to school in the morning instead of riding the bus. I suspect he has sensory integration issues and asked for a referral for occupational therapy.
On top of this, on August 27 he got a bad sinus infection and what we thought was an ear infection. And basically he had severe ear pain for 6 straight weeks. He was on 3 rounds of antibiotics. The dr put him on a steroid bc he thought it was Eustachian tube dysfunction. Luke missed 11 days of school in total from the ear pain.
We went to see an ENT last week. He said it wasn't his Eustachian tubes as our pediatrician thought. Luke has TMJ. His jaw is radiating pain into his ears. I have read other TMJ sufferers' stories similar to Luke's.
Last week he tried to go to school. He got sent home because the teacher said he can't function in class. Tylenol and ibuprofen don't touch the pain. Heat and cold don't help. Nothing helps.
As of right now he's not going to school. We are getting his homework and having him do what he can at home.
He has an appt with a physical therapist this Thursday. And with his dentist a week from today. I also have an appt for him with an OT for an evaluation on 11/1, and a referral to Easter Seals for OT eval, but they take months to get into--Easter Seals is the gold standard for testing and what the schools require if he is going to get an IEP or 504.
So we are really struggling with him and I am so so scared. It's awful to see him in pain. It's terrifying to not know when he'll be able to go back to school or even if he'll be able to handle it. To know we have a long road ahead of us to get his issues worked through. I tell myself it's not cancer or anything deadly and it's going to work out. But it's still so uncertain and I'm struggling dealing with everything.
He is very introverted, sensitive to sounds, touch, smells, doesn't like to shower or brush his teeth, sensitive to certain types of clothes, socks/shoes, limited food choices. Basically I looked through a list of issues for sensory integration disorder kids and he fits a lot of the categories. He's just been coping well enough and we've helped him compensate, until now.
Sophie is doing well in school (1st qtr only got one B, in Chemistry, all As otherwise), but she has been suffering from depression since May. We think it's from her vertigo med amitriptyline, which we are close to having her completely weaned off of. But it has been a slow process to get her off of. And in the mean time she's still feeling some depression. She also gets anxiety attacks at times. She has Ativan for that when she needs it.
We saw a nurse practitioner last week about her options. Sophie doesn't want to start an SSRI, which I'm fine with. She is deciding whether she needs/wants to do talk therapy.
She is in the school play which is this weekend. She has a principal role, not a lead but a good part with several lines and solos. It's been really good for her to have play practice after school every day. She needs structure and to be busy, in order to be happy.
Mark and I never spend time together. We are all work, all kids, no play. It's taking a toll.
I'm so thankful that Sophie has stayed healthy (knock a giant piece of wood!!!) and she is self motivated and has a solid group of friends. I know she's going to be fine.
I know we have to act now to help Luke get his issues healed, or we will end up with a 25 year old playing video games on our couch and doing nothing else with his life. And he is much too smart and kind and loving for us to let him go down that path. I just pray it's not too late.
9 comments:
I found your blog in 2012, I think, and went back and read it from the beginning. I have checked in on you periodically ever since. For some reason, I checked on you today, of all days. I commented once before (can't remember when), saying that I was still following your story.
So, I imagine your post today was hard. But I appreciate hearing from you. I sympathized with you when your dad was ill and then passed. The scoliosis journey was fascinating, and I am glad it had a good outcome. I will now pray Luke and your family make it through this challenge as well. I know Vickie is a most loyal commenter over the years (Jill too), and I imagine they will be glad to hear from you as well.
Oh man, Laura...I'm so sorry you guys are going through this. The middle school years are hard enough as it is, I can't imagine what poor Luke must be going through.
Please do this one thing for me: take ten minutes a day to do some deep breathing, or do a guided meditation, or just do some stretching. Just ten minutes where you focus on YOU. I think it will help take the edge off of some of your anxiety and it will give you a chance to refill your own cup so you can continue to take care of your family. I know how you are - you'll spend all your energy on everyone else and have nothing left for yourself (I speak from experience here!). Just give yourself 10 minutes (or more!). I will worry less if I know you are doing at least a little something for you. <3
I hope the next couple of months give your family some answers and some relief. You'll be at the top of my prayer list!!
PS. My phone number is still the same if you need to text/vent/call/vent/cry/whine...whatever you need. :)
Trace4You is right - I'm so glad to hear from you and I'm glad you wrote about this so we can all keep you in our thoughts.
Wow!
That is a lot for any family.
Pace yourself for the long haul, because probably that is going to take a while to sort.
We had a full year of middle being very sick. And then two years (for me) of being scared and adjusting. So I have huge sympathy.
I thought of a lot of things -
Kids at our schools have taken online classes for a semester or even a year in these types of circumstances. (The most recent we knew was a heart transplant, junior in high school. The one before that was bone cancer (grade school-high school on and off) So, yes, keeping things like that in mind helps.) Here, private schools, this is not free. I do not know about public.
Home school groups are sometimes very structured and will take extra kids.
Under some circumstances the school district is required to send a teacher to your home. I think that is free.
We have also known kinds to be on Skype/FaceTime set up with classroom for lectures.
High school, national honor society, here, requires members to do tutoring. Youngest tutored chemistry and various levels of math for years. I remember some of the high school kids working with younger students. It is definitely free. And they are very good tutors.
Is it possible that he can skip ahead in some things? Like go to algebra or geometry? Do I remember advanced math ability? Because maybe this is an opportunity, not a problem.
I think the type of iep you want is medical iep. Any days he misses due to diagnosis do not count against him nor the school. I think you just ask the school for the paperwork.
I think you want an orthodontist who is also a surgeon. The type who work with cleft palettes.
We went thru something like this with our youngest when she was 2-3. And hers (jaw misalignment) was caused by huge adenoids. She also had sleep apnea. So step one was panorama xray by speciality orthodontist. He then sent us with the X-ray to an ENT. Tonsils and adenoids were removed. Then she got major braces and headgear. And they told me most of the time this is not caught until kids are junior high age-ish. She had two more rounds of braces later years. And she has worked with a physical therapist a couple times, later years.
We sort of share therapists around here. Oldest had therapist in college for four years. Youngest, eight years younger, same college, now has same therapist. She requested her. Free. They are both introverts. College living is tough. They love this therapist. Youngest also belongs to a women’s support group at college. Middle uses my therapist when something is bothering her. Since therapist knows the family, middle can just pop in when she wants to talk about a subject.
I have new SIL with a 13 year old daughter. So new niece too. I see anxiety. Niece is starting with a therapist this week. All kinds of things in this girl’s life that are really tough. I see a huge weight problem and she has terrible sleep issues and I see physical mannerisms that make me think anxiety. So SIL is having her checked.
One of the kindest things to do for kids is get them a therapist.
Our little 9 year old (that stays with us a lot), just got medical iep, I asked about it and her mom said -
“She does not qualify for a regular IEP due to grades, testing etc. The only way she got medical iep is because of more than 1 medical diagnosis. It working fabulous!“
Hopefully you have some time off over the holidays. And I think I remember that you have taken back your holidays, so more family time.
Are things any better? Thinking of you.
Disney this year?
Laura, wondering about you all. Sun shining day today. Thought of you.
It snowed this morning and was warm and rainy this afternoon. Crazy.
I wash the (neighbor’s) dog’s feet many times a day. So muddy. Backyard. Field where we walk. Everywhere. My husband put 6 bags of mulch on the path thru the backyard (to the dog’s house) and it helped a lot.
I downloaded 6 Louisa may alcott books today. Audible. I can’t remember if we have talked about her. I have not read them in probably 40 years. Loved them then. I would guess they will stand the test of time.
Girls were home for spring break part of last week. It went way too quickly.
We are fluctuating between warm and sunny and snow. So bizarre.
Neighbor’s new puppy arrives this week. We will both be very busy then. I told her, I am either home full time, car not leaving the garage for days on end, or I have 13 hour days, driving hundreds of miles busy with family. Just me and the dog, or a houseful for days.
I was thinking of you today, summer is so close again. The years just fly.
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