It's been almost four weeks since Sunshine started her day program.
It's been over two months since our world turned upside down.
People are asking,
"How is everything going?"
This is my attempt to share
what family life looks like after the mental health crisis is over.
There are so many changes, strong emotions and sacrifices on every one's behalf.
Life Turned Upside Down
We are a late to bed and late to rise homeschooling family. My husband works the 2 PM to 11 PM shift and doesn't usually make it home until around midnight.
The girls have always started bedtime routines around 9: 30 PM. My boys see their dad when he gets home and go to bed after that. Everyone sleeps in. We have done this for years because it works well and accommodates everyone's sleeping needs.
When Sunshine started her day program daily routines turned upside down. Not just for Sunshine, but for everyone. The kiddos now need to wake up early and go to bed early. We're not just talking about a 30 minute adjustment. We're talking about a three hour adjustment.
This has been so hard, especially as my husband continues to work, returning late each night. He wakes up in the morning to help see Sunshine off to school because it's the only time of day he sees her at all.
Everyone has sacrificed so much.
The Least Restrictive Environment
Sunshine's transport picks her up at 7:45 AM. Before transportation was arranged, my husband or myself were driving her 30 minutes to school one way.
That was two extra hours of driving each day with only one vehicle. We had to rely on friends to pick my husband up from work, or I had to wake the kids up to go and get him. Thankfully this only lasted a week.
Sunshine's transport is a retired police officer of 32 years. He comes in a retired police vehicle, painted silver. She is the only student in the car.
This is Sunshine's least restrictive way of getting to and from school. The man is kind and very jolly. Sunshine enjoys him and talks with him all the way to school and back. But still...
My daughter needs a retired police officer in a retired police vehicle to transport her to school for safety reasons.
I'm not sure I'll ever get over that.
Changes to Routines
We used to spend mornings outside playing for hours, then came lunch, rest and reading time followed by learning time in the afternoon until it was time to prepare dinner. That was before Sunshine hit a phase of development that changed everything.
Now...
The three other kiddos wake up after Sunshine leaves. We tried to have them wake up together, but Sunshine's meds don't kick in until right before she leaves for school. It takes both Jason and I in the morning to get her ready and out the door on time. None of this is Sunshine's fault, but it is reality.
Learning time has switched to the morning because of Sunshine's school day schedule. There is no rest and reading time. Sunshine no longer is here for her afternoon nap and doesn't take one at school.
Sunshine comes home at 3 PM. Sometimes the afternoons and evenings go well. Sometimes they don't. Just yesterday Sunshine earned nail polish with glitter after working hard to have seven good days at home after school. This was a goal she'd been working on for over two weeks. She was so excited!
It usually takes at least an hour of stimming to calm her down from her day at school. Stimming for Sunshine right now is feverishly "writing" or coloring a page until whatever she's coloring is completely finished.
Dinner is at 5 PM to ensure Sunshine goes to bed on time. Meal prep time is and always has been a struggle for Sunshine.
Medications are given at 5:30 PM and not a moment later. Those medications Sunshine received in the morning only last so long. We need to be sure there is enough time for night time medications to take effect before it's bedtime.
We try to get outside after medications so long as it's not too hot or storming. We've had to say goodbye to days when Sunshine gets to spend hours outside. Instead she spends her time in school. This still doesn't feel right to me. Outside time is one of the things that helps Sunshine the most.
Sunshine is in bed and asleep between 6:30 and 7:30 PM most nights. She's so tired all the time. Her naps have been taken away. There is constant sensory over stimulation at school. Not to mention she's not getting the exercise her body so desperately needs. It makes me so sad.
My husband sees Sunshine for 45 minutes every morning. I see her for a maximum of four and a half hours a day. Her siblings spend up to four hours with her total. I still can't shake the feeling that this is so wrong after spending 24/7 with her for six years.
Missing in Action
As I said before my husband is still working. The only time he spends with Sunshine is in the morning before school and on his days off. We had hoped he could switch his hours, but it didn't work out.
Sunshine misses her Daddy so much.
With him at work, I'm on my own after school until Sunshine goes to bed. On those bad days I miss my husband more than words can describe.
In-home respite services were supposed to start, but the initial process hasn't even begun so that's at least a month out, if it happens at all. This was supposed to be my lifeline while he continued to work. Oh well.
I've noticed my boys starting to change. Dinomite feels a need to cheer me up and make things better after difficult situations when my husband isn't home. Bulldozer gives me extra hugs and snuggles. They've become the men of the house and Sunshine often treats them as such. This isn't a good thing.
Mealtime Independence
The kiddos have become used to preparing their own dinner or knowing that what I prepare will be simple. If only dinner prep wasn't such a difficult time for Sunshine...
I try to justify the meal time independence by telling myself it's great that the kiddos are becoming more confident in the kitchen, developing their practical life skills etc. Now that they feel confident preparing their dinner, they've started to do so with breakfast and lunch as well.
For all intents and purposes this is a great thing. Any mother would be thrilled, but for me, there's just been so many changes all happening so fast, with so much loss wrapped into them. I miss preparing meals for my children.
Strong Emotions
It took the older three kiddos two weeks after Sunshine started her day program to seem okay again, after two months of turmoil.
There were so many strong emotions and words that needed to be shared. None of which were easy to say or hear.
Princess seemed to struggle the most.
How did we get here? I still don't know.
Thankfully all have seemed to adjust to our new normal now.
School
Sunshine has good days and bad days at school. There are some days when she struggles at school and then brings those strong emotions home. Other days she may have a great day at school and then a horrible time at home.
We've been working really hard to help her remember what happens at school stays at school. She gets to start over at home. It's okay to have a bad day at school and a good day at home and visa versa.
This motto works well except for those days that start out horrible and just progressively get worse.
Sunshine is Sunshine no matter where she goes which means it didn't take long before teachers were experiencing Sunshine's behaviors as we do at home.
I still have this inner conflict with myself about it all. It feels reassuring to know that it's not just me. We're not dealing with parenting problems. Sunshine is really struggling, no matter who is trying to help her.
But then I feel horrible that others are experiencing what we have. My goal was always to have everyone see Sunshine at her best so they could get to know the sweet and funny girl we all love. That may sound unrealistic, but I wanted to be sure people saw who Sunshine for who she really is before learning about and experiencing her struggles first hand.
I keep telling myself that it's all okay. Things could be worse.
For now I'm just thankful things aren't worse at school. I'm not sure I'm ready for that yet. There's a difference between the unconditional love of a mother and the feelings of those who are paid to experience Sunshine's bad days.
I have to remind myself that the daily log Sunshine brings back and forth to school is the documentation we need. In the future we will be at another cross roads. This documentation will mean everything.
Academics
We have been a Montessori family since Dinomite and Bulldozer were in preschool. Sunshine has been brought up in a Montessori lifestyle since she was adopted at eighteen months.
This year Sunshine made such huge strides academically as she was finally stable enough to do so. The Montessori materials are perfect for educational needs with her vision impairment and autism.
Just before Sunshine's mental health went downhill she had started to learn to read. We were working on CVC words. She was learning her numbers to 100. Sunshine was finally learning to write. Things were going so well.
And now...
Every now and then a worksheet will be sent home from school not at all tailored to Sunshine's academic needs or skill level.
Sunshine has regressed without the daily practice of all that she's learned.
During the summer, Sunshine's day program is much more laid back. The class goes on field trips twice a week (which Sunshine loves). Sometimes they do paper crafts where the teacher cuts out all of the shapes and Sunshine just glues and colors them.
I'm hoping to see more progress in the fall. But if not, I just keep reminding myself this is a behavioral placement, not an academic one, even though it breaks my heart that I can't give Sunshine the Montessori education her siblings are receiving.
My husband and I have gone back and forth about what to do regarding Sunshine's education. Packing up her Montessori learning materials and activities was one of the hardest things I've had to do. It took me over a week, with tears pouring down my eyes every step of the way. This was a loss I hadn't expected to feel so much.
Sunshine LOVES to learn. Learning time is the most enjoyable time during the day with her. Yet at the same time, it can be the most difficult for her as her frustration tolerance is so low. With so little time with her now, after having been at school all day, we just haven't decided how to address her academic needs and keep Montessori principles in place.
Hopefully with time we'll figure this out.
Friends
Sunshine is in a classroom with five other students. Some are nonverbal. Others have significant behavioral issues of their own. There are six adults in the classroom to manage all of this.
Sunshine has been punched and bullied by "friends."
Sunshine has also been the bully to "friends."
I still struggle with this aspect of the school/ day program she attends.
There are no positive role models for her. Instead she just brings home the behaviors of the other children.
Yet, on the other hand there is no one that will fall victim to her aggression, who doesn't dish out the same thing back.
Still to accept that she belongs and fits in there... That it's where she needs to be...
How will she learn to overcome these behaviors if they seem normal and okay because everyone else has them too? I have to believe that she can overcome them. She's smart and capable.
Oh my heart!
The Inner Conflict
My husband, older three kiddos and I thoroughly enjoy the break that comes when Sunshine goes to school. It's amazing the difference in our home. Everyone feels it.
Transitioning to when she is home is very difficult. It's almost as if it's a completely different lifestyle.
We all know life is better with her going to school, and even Sunshine says she enjoys it, but it's still hard and just so different.
I feel guilty for enjoying time apart and I feel guilty for struggling when she's home.
There is always such an inner conflict of emotions.
The Future
Gradually we are adjusting to our new normal. Yet we know life can't stay like this. It's inevitable that more changes are coming. The mental health crisis is over, but now is when the real work begins.
This is not the last time that Sunshine will have a mental health crisis. We can hope and pray that nothing like this happens again, but at this point, any medication changes in the future have to happen inpatient.
This will not be the last time Sunshine ends up inpatient at a child's psych ward. Developmental changes wreak havoc on the brain. Medication changes can and probably will cause instability. None of this is Sunshine's fault. It just is the way life is for her.
This is only the beginning of a long journey to help Sunshine become the best she can be with the challenges she's been given.
So we've begun to prepare for a future that will be beneficial for everyone.
As soon as it's possible my husband will be returning home full time to work with me. For those who don't know, this is how we helped Sunshine be her best self in New York before we moved.
This is a huge sacrifice financially, but Sunshine needs her father around. It's important to have two adults at home with so many special needs. We're hoping with both of us working on the blog we'll be able to make up the income quickly.
With two parents at home, no matter what struggles Sunshine is having, my husband and I can divide and conquer, tag teaming when necessary, in hopes that we can keep her home and not have to consider residential placement.
We love Sunshine so much and want to do whatever we can to help her succeed in life.
It's rare to get a glimpse of life after the crisis. Many believe things get better and return to normal. Life becomes simple again. But that's not the case with a mental health crisis.
No matter how many times I review everything in my mind, I can't figure out a way for us to go back to the way things were before all of this happened.
That simple life we were used to is gone. Everything is so much more complicated.
I think to myself...
How many families are living like this?
How many families are asked to sacrifice everything in the name of mental health because they love their child and there is no real help out there to be found?
How many people are working through all of these changes, experiencing such strong emotions and making so many sacrifices?
This is just a glimpse of what family life looks like after the mental health crisis is over.
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