I TOTALLY hear you. Once I was at the Paedatrician's office when Ryan was 5. He had spent more days that year in hospital than not. We were there following 7 seizures in one day. I saw a parent from my studio with her daughter. She said "I can't believe we are here again. Twice in one month. She just can't seem to get rid of this cold!" Hmm... All you can do sometimes is smile and nod. (And think - you stupid beyotch - can't you see what is going on here?)
Girls are harder to parent as teens. PERIOD! (and that's a big part of it - HORMONES). Boys are just dumb as teens. Like my nephew. The other day he and some friends were playing with BUTANE! He has severe burns on his leg. DUMB! But dumb is easier to deal with that trouble. I don't think any of our boys got into big trouble as teens. Just that DUMB stuff.
Teen girls are full of drama. With Ashley it was crying. "my boyfriend didn't text me "good night" - he always texts good night. He must be breaking up with me!" She often pulled herself inside her hoodie and just moaned. She constantly wanted to vent to me yet in the morning when she came downstairs and I said "Hi" - she would say "don't talk to me". Yep - that was little miss Debbie Downer! LOL! Glad to say she finally outgrew that!
But yes - raising a special needs child DOES make you change your perspective. Sure kicked me to the floor. But once the dust had settled, I picked myself up, dusted myself off and said "let's figure out how we are going to make this work". Ex just settled on "Oh Poor Me!" and it never got better. Best he is not around.
Josh is here for Ryan and I. He never thinks "oh poor me". He could bail if he wanted. Instead - he helps. He supports. He never takes on my role but he does listen to my frustration and in his own, calming way - helps me figure it all out.
It is calm. Calmer than it has been in a LONG, LONG time. The routine is almost seamless (I'm afraid to right this - stuff has a way of falling apart). We only have 2 workers right now. Yet they are both very dedicated to him. I feel secure. Even more so than when we had 5 workers.
I saw Catherine's photo on the front page yesterday for Gay Pride week here. (and please don't take it that I'm anti-gay - I AM NOT!!!). But the sight of her made me want to vomit. She did THAT much damage. I am SO glad she is gone. I never wrote her a letter or withheld payment (as much as it was justified) - I just let it all go.
I am in a good place. I will work through my stuff with Brandon & Ashley. It's just stuff. There's always gonna be some stuff. & it's still best not to sweat the small stuff. And it's all small stuff these days.
the boys' depression has me terrified sometimes as it is something I suffer with as well so I know the depths to which it can go...
but last school year I was listening to the new english teacher complain (she was pregnant with her 1st baby) about how she didn't know how she was going to buy a gate that could ever encompass the whole stretch of space from her formal living room to the space where she would allow the baby to be
and
all I thought of was...
formal living room?
holy 1st world problems
I am grateful I have a living room
and the telltale sign that I have a kiddo with special needs (you know aside from the van and the gear and ...) is the fact that when I see knew babies I am always complimenting weird stuff...look at that head control, look at that eye contact, wow what a strong little nugget.
usually I try to let things go but a friend of ours was looking at our pictures of our make a wish trip to Fort Myers Beach. Their comment was...must be rough. I wish WE could have someone pay for a trip like that!
I just looked at them and replied that I would gladly give up the right to have a vacation for the rest of my life it it would mean that she didn't qualify for this one.
It's good to know I have company in this boat. Barb, D16's past was littered with hospitalizations, surgeries, seizures, etc. We've been in a good place for awhile now, and I'm very grateful for it.
But like Ryan and Finn, we also have our fair share of surprises. This week has been one of them. First an appointment with the nephrologist on Tuesday - her seizure meds are processed through the kidneys, and she has renal acidosis. D16 is supposed to drink a gallon of fluids a day. Her dad and I make sure we always have water bottles around and on her night stand. But she never comes close to that (not even a half gallon), and I get lectured. I totally understand the gravity of the situation, but how do you make a cat bark? Or make it understand it *could* bark if it put its mind to it?
Anyway, she had a 4 hour EEG yesterday, and the results were no surprise. Her seizure activity has doubled, and there is a medication increase. I just got off the phone with the neurologist's nurse to make sure she lets the Dr. know that she needs to talk to the nephrologist before I do anything (I promised that). They are in different hospital systems, but I'm hopeful that they can chat sometime today.
It's TOUGH.
And Fig, it always makes me feel blessed to live my own existence. She has it so tough and always has a cheery smile. I love having a special needs kid. I couldn't imagine her any other way.
I'm sorry Chuck didn't follow your lead, Barb. It's his loss. I'm grateful that my XH shares this load with me, and Sweet Stuff is supportive as well.
My landscaper is here so I'm going to sign off. I'm finally getting the HOA and my neighbors off my back.
Betsey
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
Good luck with the neighbours, Betsey. Josh and I garden. We garden the weeds. The deer take care of the flowers. But we trudge on. Josh is out in rubber boots a lot lately. We're trying to get grass back (last summer was a killer drought). We put in a sprinkler system. To water the dirt. That makes mud. LOL - note to self - get that guy some Crocs!
But as you say, Fig - these are first world problems.
Since Ry has been good lately - my cat has not. We've been struggling with litter box issues. He is a sweet little guy (purebred - paid way too much for him) but so quirky in his toileting habits. After 2 years we had got him to go consitently on a dog pee pad. Then when I was away last month he chose a new location - right in front of our laundry room door on the the wood floor! UGH. We scolded. We cursed. We ran him to the pee pad all hours of the night. Last week we were at the zoo with Ryan and he POOPED in front of the laundry room. We have barricaded it, sprayed him with water. Cleaned with the enzyme products etc. We have put Felway spray in the litterbox room (pheromone spray) and as a last resort - took him to the Vet & paid $200 for urinalysis to rule out a UTI. Negative. Vet suggested putting down tinfoil in front of the laundry room. Riley loved it! Such fun!
Anyway - after consistently taking him to the Pee Pad every hour for the past week - he is back to going there by himself. We sure went through a lot of treats.
Life has its challenges. With exes, kids, pets, work - you name it. But we muddle through.
And we're still smiling.
Betsey - I hope things improve for you your sweet daughter. It is so difficult!
And Fig - I'm so happy that your whole family got to go to Florida. And I hope you can go again. And as for those other Dickheads...
The fact that all her drawings are I love yours to you is a testament to your bond with her. I love to hear how she still loves to cuddle - boy do I miss that. My kids all loved to when they were little.
You can set the stage for her teen years now with guidance, support & discipline. Good on you for recognizing some extreme behavior & taking her to a counselor.
"Little kids, little problems. Big kids, big problems. I always wondered what that meant. I learned. Keep letting her know how much you love her & that you will always be there for her. And let her be around other kids a lot. Good kids. She soon won't want to be home with you so much. Lol
Finn had a modeling session yesterday The photographer knew all about her limitations and I tried to keep my expectations in check and I think they got some good pictures but...
Autism can kiss my butt
nothing breaks your heart more than seeing your child having a melt down because there are too many balloons or there are too many people looking at her
no eye contact no smiles
but
we will see how the pictures turned out and if any are usable for the products
cherish those I love yous Gineen I know that every time I get a spontaneous one, I want to record it so I can hear it again and again
I know all the blood work on myS 17 made him a hard nut to crack. It s so hard to know if you have really reached his core. My other 3 are easy reads in comparison. I thank my lucky stars for that.
I know his and the girls hemolytic anemia is nothing compared to real special needs. I got a taste of the wringer for three years and I will admit I admire all of you for what you are able to handle each day.
kat
Me-53(and learning!) S24, S21, D18, D17 Just keep swimming, Just keep swimming. Dory
I agree! Since D16 is completely nonverbal, I'd sell my soul to hear the words come out of her mouth. (Please don't take this as a guilt trip, because it's not. It's just my reality.) The good thing is that I know D16 loves me. She acts like it.
Quote:
nothing breaks your heart more than seeing your child having a melt down because there are too many balloons or there are too many people looking at her
I still have a variation on this comment at 16. D16 has always hated shopping - tall displays, endless aisles and a sensory overload. Now that she's taller things are better, but she still hates going into big stores like Costco. And if there is any thing in costume, it's guaranteed to wig her out. We could NEVER take her to Disneyland. If Mickey ever came up to hug her, she'd hyperventilate, cry and pee in her pants. Who would spend $100 admission to watch their kid freak out?
Oh well. At least we have that as an excuse not to go. D19 went with her volleyball team, so she satisfied that itch with her friends. It all worked out.
Take care--
Betsey
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
the idea of Finn at Disney makes me want to puke. So much sensory overload and she would be having seizures and bnging her head and biting her arms and screaming.
When we did our make-a-wish trip this year they suggested that and I almost died.
I said NO WAY!!! Cori and I had looks of horror on our face and I started rocking in my seat. The idea is too much to even comprehend.
Brandon accepted my offer of paying for his trip to the Dominican following his friends' wedding with the rest of the wedding party and family. Now that it is done - seems the pressure is off and he is happy again. Have enjoyed watching some of the tv shows he has worked on recently and last week he asked when our family reunion was so he could be sure to be there. What? He usually skips those things.
Ashley announced on Thursday that she is NOT going back to Niagara. She loves it here up north but knows she can't live with us because she has her cats. She has ended things with her boyfriend and it is amicable. He is still living in her apt with a friend but she gave notice and they will stay till the end of the lease. They have already paid their rent. She told me she would try for an apt and new job for the beginning of Sept.
Today she found the perfect apt. Well, I actually found it through a friend and she loves it. Right in town with a woodsy view and only 2 minutes or so from here. So that is done. Her job ends 4 weeks from today so she will be pounding the pavement on her day off this week to try to get another one lined up. She will also look after her older brother while I'm travelling this winter and I will pay her for that (rather than the agency). She is already planning her trip to Niagara to get her furniture and move it up here. As she had said earlier on - new guy is just a friend. Although he has been very supportive of her, has given her leads on a new job and will help her move.
So - maybe I was just having a bad week with them. I am over the moon about Ashley moving up here - never thought that would happen and Brandon seems to be coming around. It's all good.
