Tag Archives: mental-health

Trust takes time

Last year was one of the most difficult years of my life with Bridget. The diagnosis of catatonia came with an inpatient drug treatment, followed by almost 8 months of titrating drugs up and down, adding medications, weaning off medications and having to trust the medical professionals that they knew more than I did.

In Massachusetts we had a tragedy a few years ago where a mom murdered her three children and then attempted to kill herself. Her case is currently underway in our Courts and being played out nationally on the news and social media. I have been hesitant to “join the bandwagon” because her case is currently a criminal case, not a civil one.

I am not writing about her guilt or innocence. I am not writing about if she was criminally responsible or not due to mental illness.

I am writing because the some drugs Lindsay Clancy were on are the drugs that Bridget was treated with over the past 14 months. The drugs that had me pulling over on the side of the road, because Bridget was so out of control that she was ramming her head against the side window of the car.

The drugs that had her shouting she hated me, while also hugging me. The drugs that due to her medical condition, we did not know if it was the drugs or the condition of catatonia, combined with an intellectual disability, combined with being quasi-non-verbal, combined with autism and PACS1 and puberty emerging.

There were many instances during that time period, when brought to tears, I questioned what I was doing to my child. Maybe it would be easier to let her slide into catatonia and her own world rather than fighting to stay in mine.

The difference between Lindsay Clancy and Bridget are vast. Lindsay could verbalize how the drugs where effecting her, how they were making her feel and to advocate for herself. With Bridget, I had to go on behaviors. The tears for seemingly no reason. The balance issues. The up all night stimming versus the inability to wake her up because she was so snowed. The vacant stares versus the hitting her head on the floor.

The similarities between Lindsay Clancy and Bridget are also very minute. Both have a mental illness. Both were (are) being treated with selective serotonin reuptake inhibitors (SSRIS) and benzodiazepines (benzos). Both had strong family advocates, crying for help for their loved ones. Both had to trust their healthcare providers to stay the course, to trust that the doctors knew what they were were doing.

The devastating factor that is the biggest difference is I could trust Bridget’s neurologist because we had been under her care for 16 years. When she diagnosed Bridget with catatonia, she did not just transfer us to psychiatry, but took time out of her day to go to the appointment with me. When Bridget was hospitalized, this neurologist visited her in the hospital to make sure she was okay. When the effects of the drugs were more than we could handle, we had trust in her team because they knew her.

This is the heartbreaker, for me, about Lindsay Clancy. Her team did not know her, she did not know them so she did not trust in their treatment of her. Her team let her down, because they (per testimony) never consulted or spoke to one another. They did not review one another’s medical entries. In the world of electronic records, this is mind boggling. They had to trust what Lindsay was reporting to them, of course, but they also should have provided the extra care Bridget’s neurologist showed, but talking with the other treating providers. I honestly believe, if it was not for Bridget’s neurologist, her psychiatric team may not have trusted what I was telling them.

I know, in my heart of hearts, I would not have trusted the psychiatric team if I did not have trust in her neurologist.

There are those that look at this case as “doctor shopping” or not following through with the prescribed plan of care. I want to shout at everyone that until you live through what medication and mental illness does to a family, you need to listen to this case and to the entries in this woman’s diary. Lindsay was crying for help (in my opinion) and seeking care from anyone who would listen to her.

Just as I did, in the beginning of Bridget’s catatonia. I went to her pediatrician, I went to her gynecologist and to her school team. Not ever thinking that she was having a mental disease, I asked her pediatrician to if she could consult with Bridget’s neurologist, and thankfully there was no ego involved. Instead, the pediatrician but a call into neuro that day. When neuro called back and our pedi was in with another patient, she allowed herself to be interrupted to take the call. We had a team working together, not working as individuals.

I firmly believe, that Bridget’s care was successful because she has a rare disease and has been in multiple specialist’s care since birth.

Had she not? Had we not been entrenched with Boston Children’s Hospital for 17 years? Had I not had faith in her current team to consult with psychiatry? It is not blind faith, when Bridget needed spinal surgery, I got a second opinion at another facility. I have always questioned the therapists, the school system, the pharmacy and the doctors when it comes to Bridget’s care.

It is because we had a history with providers, that we were able to trust in the treatment.

Yes, there was tears, some days too much wine and whining on my part. Yes, there were times I questioned if I was making the right decisions for my child’s plan of care. When I had to trust in those who have always treated Bridget with compassion.

But I have 17 years experience in living this life. Lindsay Clancy and her family only had months. Yes, she is a nurse, but there is a difference between living with disease and treating others with it.

We were lucky. It took almost 12 months to get the drug combinations to bring Bridget back to our world.

My girl, with love, patience and yes medications, is almost back to the girl she was before catatonia entered our lives.

Any of us can Monday quarterback or second guess exactly what Lindsay Clancy was experiencing during the months preceding that horrific night. I will never know what was happening in Bridget’s brain as we were finding the right mix of prescriptions and doses. She, to this day, is unable to tell me how the drugs make her feel. If when she was trying to jump out of the car, she had suicidal idealizations or when she screamed she hated me, she really felt that way or the drugs were making her lash out at me.

I’m just grateful I had trust in Bridget’s doctors that allowed me to question what we were doing but provided me the answers I needed to not lose hope.

Unless you love someone with mental illness, or live with it, hate that Lindsay Clancy murdered her children.

And be thankful that you have never experienced whatever she did that led to tragedy.

There should be a what to expect book for your 50’s

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Remember when you were pregnant and there was this “bible” of what to expect in each trimester? While not 100% accurate there was enough details that you were not shocked when all of a sudden you could tell the difference between Braxton-Hicks and holy hell this is the labor the book warned me about. This book was then followed by a book of fiction about your child’s first year and their milestones.

Now knee-deep in my 50’s, I am kind of wishing that in my 20’s or hell even 30’s there was a book of what to expect when I entered second half of this life.

For example, I wish I had known that I once I got married would be answering the question “what’s for dinner” every freaking day for the rest of my life. And that when we then procreated the little monsters would not only ask this question every morning at the ass crack of dawn, but then they would probably refuse to eat whatever I then cooked for dinner twelve hours later.

It would have been helpful to know that in your late 40’s you not only will have a reemergence of acne, but you would also grow grey hairs. Further shocking is that gray hair is not limited to the crown of your head but your chin!

You cannot see the chin hair unless you put your cheaters on. Yet your teenage feral child will point it out to you from 20 feet away.

It would be great to know that while you might never change your diet or activity level from your 20’s all of a sudden in your mid-50’s there is 10 pounds you didn’t even realize you gained because of hello leggings and boobs.

In fact, you are so happy in your 50’s that you finally have boobs, that you do not realize that secretly that is where the 10 pounds have been hiding that all of a sudden you gain another 5 pounds in your ass and belly.

You are still walking and eating the same meals, for example popcorn and pinot for dinner. The portions have not changed. You are still doing the same amount of activity. But BAM all of a sudden you have boobs, an ass and for fucks sake a spare tire around your waist.

In your 20’s you could literally fall off a truck and there wouldn’t be a bruise. Now you trip over a spec of dirt on the floor, and you swear you broke your hip or look like you’ve been beaten by a tire iron.

You now throw your back out and end up in PT from making the bed. The same bed in your 20’s knew wasn’t worth making because after all, you are just going back in later that night.

You can no longer read a menu in a restaurant with good lighting and +1.75 magnifiers. Or for those of us who always wore glasses, suddenly you have to take them OFF to read the menu.

In your 20’s the world was whatever you wanted it to be. For example, you could just decide to move to Maryland. Just pack your car and go to Colorado or Mexico or Japan. Now in your 50’s you have all these children and a spouse and a mortgage.

Which is why you cannot just leave your job. No one wants to pay you the wage to afford the lifestyle you are accustomed to. Not when they can pay someone in their early 30s half of what you deserve for your experience. In your 20’s you could live paycheck to paycheck and now all of a sudden you are once again pinching pennies to make that when that 30-year-old is suddenly your boss you survive their learning that with your age comes experience they should probably listen to.

The doctor you never went to in your 20’s is now telling you about your cholesterol levels, fair skin warnings and making you get those new boobs you grew squashed into the mammogram machine by a perky little 20-year-old that has the coldest hands possible since she hasn’t put on that extra padding yet.

Without warning, you are suddenly getting up at 3am to pee, and there is not a baby in your uterus playing the drums anymore. It’s just your body saying: I know you’re tired but fuck you not only am I going to make you have night sweats that make it look like the roof leaked, I am going to make you run to the bathroom, fall over a spec of dirt and maybe just maybe not pee your pants.

The man you married, the love of your life suddenly breathes so freaking loud. Thanks to menopause (which is missing an “n” it should be MEN-ON-PAUSE), not only is your libido hanging lower than your new boobs but this man that lives in your home has become so annoying. The things you thought were cute are enough to make you go nuclear.

Especially when he asks you what’s for dinner and there is freaking chicken defrosting on the counter. You answer (sarcastically with a side of snark, if you are being honest) “lobster obviously”.

On almost the dark side of my 50’s I realize I am closer to retirement age than I am to being legally old enough drink. How did time go by so quickly?

Yeah, there should have been some warning to our 20-year-old selves that midlife comes a hell of a lot quicker than you think!

A little self-care goes a long way

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I am horrible at self-care.

With my eldest away at college, I am very aware of how much I took advantage of her being here. Wait, that sounds bad. I did not really take advantage, more I was spoiled by her willingness to hang out with Bridget while I went for a walk, a night out or even just running to the grocery store without Bridget tagging along.

I am extraordinarily lucky that while my friend’s children are grown and have either left the nest or are fully independent, my friends understand that 99% of the time, if they see me that I will have Bridget with me.

I am also lucky that while her dad is as joined at my hip as Bridget is, he does get that once in a while I need a mommy-time-out.

It is my own fault that I have self-isolated…which brings me to how I have also neglected my own self-care. Not just by putting family and work first. Not by not prioritizing myself. But I think I might have had a little (gasp) depression over the past year. Those who know me, know I just threw up in my mouth a little bit by not only writing it out but acknowledging I may not always be able to pick myself up by my big girl panties and suck it the fuck up.

If not depressed, I definitely allowed myself to get “old” over the past year. I’ve gained weight. I am not maintaining my nutrition and balancing the snacks like a 50+ woman should. Instead, I am acting still maintaining the diet of my 16-year-old self with access to my parent’s liquor cabinet! I have not truly exercised (other than walks that become shorter and shorter) this past year. Me, the woman in her 40’s that was running obstacle races probably could not jump rope in her 50’s.

Somewhere along the way, I decided my gray hair was fine. That it was natural. After all, I haven’t worn makeup since it was forced upon me at my wedding 29 years ago. I have historically been a woman that is low maintenance, just some wet hair and some hair gel and I am ready to go. I even started cutting my own hair over the last year (something those of us with curls can get away with!).

Then I saw this photo of me.

Holy crap, I got old.

And not in a graceful, Betty White way.

So the other night, I took some time for some long overdue self-care. I went to an adult salon, not a chain.

Thankfully the stylist not only took mercy on me but guided me away from looking like Elvira and inadvertently signing up to a hair commitment I could never keep. Three hours later I went from this to that.

Photo courtesy of Michelle @ Color Me Crazy Hair Salon

Thank you, Michelle at Color Me Crazy for rejuvenating this tired, overworked special needs mom. It was just what I needed.

The same…yet so different

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We are at a strange time. A time when most of Bridget’s typical peers are doing typical things. It is some days difficult to see my friend’s social media posts about their children, balanced by how happy I am for their child’s accomplishments.

Homecoming, for instance. My friend’s daughters are gearing up for homecoming, with dress decisions, boy decisions, deciding what events to go to. Bridget’s homecoming was a walk around her school and a bounce house. There might be a homecoming dance, but she will not get asked by a boy. She will not drive with friends or be dropped off by a parent. My friend’s daughters will get dressed and do their glam together. There will be laughter and oh my gosh moments. A typical father will wrestle with his little girl in a too short dress going to an unsupervised dance with a boy he thinks he could probably still arm wrestle, but not for much longer. A special needs father will dance with his daughter and make sure no one asks his little girl to dance.

The typical parent and the special needs parent will repeat this process in the Spring during Prom season.

The same, homecoming. But yet so different.

In our area, in Junior High students can begin making choices for where they will spend their high school years. This is usually when a special needs parent makes the most difficult choice between inclusion or a dedicated special needs school. For the typical student there is a process. Do they meet X criteria? Did they win the lottery for the most desired school in the district? For the special needs student it is a similar, but more convoluted process. First, unlike the typical student who can do school choice the special needs child needs permission to even begin looking at alternatives. Once the district is in agreement, the district not the parent has the ultimate decision on where this child will attend school. The schools that are dedicated to special needs also have criteria before even interviewing the student. They look at medical records (are they too fragile?). They look at IEP accommodations and how independent they are. They look at academic testing and IQ results. Yes, believe it or not in the special needs school there are IQ thresholds that may determine where this child can even apply. Each parent, the special needs one and the typical one will go through moments of heart-crushing disappointment and hope to have that moment of YES this is where my child will succeed.

Then the process is repeated, for the typical parent at graduation and the special needs parent when their child ages out of the school system the day before their 22nd birthday.

The same, yet different.

The typical teenager will get their first job. The special needs teen will work vocationally within their school day.

The typical teenager will play school sports. The special needs teen will participate in Special Olympics.

The same, yet different.

From there, as these teens age, the difference between that typical child and special needs child becomes greater.

The typical child will get their driver’s license. The special needs child will ride in the front seat.

The typical child will go into the workforce, the military or higher education. The special needs child will remain in their high school building.

The typical child leaves the nest. The special needs child will not.

Both children will be celebrated for their success and supported in their missteps.

The same, but just in different ways.

Dear Bridget

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Last week this memory popped up on my Facebook feed and I had no idea what I had written way back in 2013.

I searched and found this post where I was trying to explain to a four-year-old Bridget (Boo back then) why she had to work so hard to make the tiniest progress and how sorry I was that I am the one that causes her the pain, procedures and therapies. Yet I never once in those four years, have I regretted one moment of this unexpected life.

Unfortunately, for Bridget, turning 16 was not sweet. It has been nine months of struggle and after a lot of work, acquiring not one but four more diagnoses and adding more doctors to her list of specialists.

Which brings me to this moment, where that letter to Bridget needs to be updated. *Tissue warning ahead.

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