Oh, Really?

When you’re on a long journey of a specific life experience, even though it is ever evolving and changing, there are some things that can still catch you off guard.

My son has been in a therapeutic day school since 2013.  We’ve had multiple IEP meetings, they have a full history complete with doctor diagnosis and more notes and feedback from me than they care to have, I’m sure.  We’ve discussed how much of my son’s manifesting occurs at home, in his safe space; A space I need to keep safe for him, even though it causes a lot of inconvenience and difficulty for my son’s siblings.  This post came about because of a conversation last week with a team member that was a little off-putting.  I’m going to preface it by saying that while I can come to the conclusion that it is true that most people can’t truly understand something unless they experience it, it is extremely frustrating nonetheless.

My son has been having a lot of difficulty of late with mixed states.  Even though this is a hallmark of bipolar, I suppose if you don’t see it frequently, it can be surprising to witness.  Let’s go with that for now.  Although I have had many, many conversations and email exchanges with the therapist and teacher team explaining my son’s experiences and decompensation at home, it is not something they see often at school.  What they understand of my son at school is that he is a child that internalizes all of his most significant issues and presents with, “I’m fine.”  It has become clear to those who have been around him for long periods of time that it takes a skilled eye to see when he is struggling.  Right now, as his stability is compromised, it is much easier to see.

The “seeing” is where they are getting tripped up because it is unusual.  So, when the therapist called me to say that my son was reporting being very sad at check in’s along with crying, but then witnessing him skipping down the hallway only a short time later, I confirmed that his often rapid-cycling mood does indeed manifest that way.  The therapist was a little out of sorts over this revelation in front of his eyes.  When the therapist asked me if this is similar to what I see at home, I was glad I was on the phone because I know I rolled my eyes (I’m an eye-roller from way back).  It’s difficult not to be frustrated when I have described this to the team more times than I care to recount.

When I get the, “Wow,” reactions, especially from people who have been with him in a setting for a long time, it confirms my belief that people can’t really understand something unless they “see” it for themselves.  No matter how many times someone says, “I understand,” they don’t until it happens in front of them.  This is my experience with people, and it is doubly frustrating because I spend a lot of time talking about mental illness and particularly that of our family’s journey.  When I hear the, “We didn’t know,”  my mind says, “Oh, really?” no matter what words come out of my mouth.

As a mother and an advocate, I can only say that I feel strongly that it is necessary to bring awareness for and to the many children that suffer from an illness that can be invisible to the eye, or entrenched in a behavior manifestation that belies understanding.  There are scores of children that suffer in silence or endure judgment over a illness that is not well understood, neither by themselves nor their peers, and not even by their teachers and caretakers.

While my sons still experience stigma and are very misunderstood by a good portion of people in their lives, it doesn’t mean that people don’t care.  I want to say to others on the journey that there is a definite difference between people who care and are trying their best to understand and those that are just dismissive.  I know that our team cares about our son and they are doing the best they can with the tools they have at their disposal.  The illness that is bipolar is still not as well understood as it should be.  I dedicate a big portion of my life to this, so I understand that a group working with so many different populations of children can’t possibly know everything there is to know about bipolar.  The fact is, my son is in a school where his ED (emotional disturbance) label comprises less than 5% of its population. This is why it is so important that advocates and caregivers are well researched and informed and know the challenges that come with an ED categorization on an IEP.








Truth Is….

It’s not easy educating others about mental illness.  Lots of people have preconceived notions and no matter what is said, minds won’t be changed.  I get that.  We all have thoughts and opinions about things we have built over time.  There is also a point at which we have no interest in certain things, as in, we don’t really want to learn about a particular subject; either it’s too controversial, too boring, too distasteful or maybe we feel we aren’t smart enough to grasp it.  Whatever the case, there are a lot of roadblocks in teachable moments.

One thing that I run into a lot, which is actually very frustrating, is the knowing “nod.”  The, “I get what you’re saying,” look.  The problem is, after another minute or so, it is very clear the person has no idea what I am saying.  Really, it’s only a problem if my intention is to have someone understand.  Most of the time, I honestly couldn’t care less whether or not people understand me.  My life is pretty busy and complicated and difficulty only comes when I’m seeking to be understood.

There are things, I guess, that most people just can’t fathom.  I have received hundreds of questions, and I have an arsenal of answers.  Lots of times, they aren’t popular.  People don’t want to hear that your child/children aren’t capable of some things. Here is a real life example of one issue we’ve faced:

Q: “Why can’t your 16 year old cut the lawn?”  A: “He can cut the lawn.  However, it will take over two hours.”  Q: “What?  This is property is really small!  Why?”  A: “My son has a processing disorder, along with an anxiety disorder and working memory issues.”  Q: “What do you mean?”  A:  “I will come and demonstrate how to start and operate the mower.  Then, I will begin to mow the lawn and show him how to cut in a pattern.  Now, I will watch him do a little bit and maybe go back inside.  After he does a little bit, very anxiously, he’ll come in to check whether or not he is doing it correctly.  I’ll go back out, look at it, point out places he’s clearly missed and set him back at it.  He’ll try to start the mower again, have difficulty, get frustrated and insist that it won’t start.  Then, I’ll stop what I’m doing, show him that it starts fine by doing it myself, and then set him out to continue.  After a bit, he’ll come back to find me again and tell me he’s finished.  I’ll go outside, take a look around and show him all the places he missed, and have him go back over those places.  He’ll have stopped the mower again, so I’ll have to wait and watch him restart it.  This time, he’ll be watching that I’m watching him, but he’ll get it started.  He will mow over all the places he’s missed and then come back to find me for a final check. If we’re lucky, that will be the end of the process.”

Response from acquaintance: “That seems like an awful lot, you baby him too much, just let him do it, I’m sure he’ll be fine.”

My response: “How about this?  How about you take my place and you just hang outside and watch him do it?”  If you need validation that I’m doing it wrong, please feel free to take over and get something off my plate.

That is a minuscule example.  If I want to double down and ante up, I can give you another.  A younger son of mine has bipolar disorder.  He is nearly 13, and right now, he is very unstable, and as we say, “breaking through his meds” (meaning, his once successful medication regimen is coming apart and not working for him).  Besides the return of active suicidal ideation, his perception is skewed and very illogical.

Person: Your son needs to understand that he won’t always get his way.  Me: He understands that very well.  Person: Well, he seems to be very upset that he can’t have his way right now.  Me: I understand that through your limited view that may be what you believe to be occurring at this moment, however, that is not at all the case.  Person: It’s clear that at his age he should be able to hear “no”.  Me: What is clear is that you have no understanding of the challenges to someone in the midst of a depressive cycle.  My son is having real difficulty coping with his emotions since he feels so poorly about himself and feels he’d rather be dead.  Does that make you feel better?  Person: *crickets*.

This may sound harsh, and I can only say, if as a parent, you have ever dealt with unwanted advice from people who would rather sit in judgement than understand anything, you know where I’m coming from.  My patience level and filter has waned a large degree over the years.  My only interest is my son being able to function to the best of his ability, and being the best person he can be.  I don’t have time for judgmental people, haters or ignorance.  The good news is, there are people who care, do their best to understand, and are even supportive.  When we find those people, we treasure them.  In the meantime, we’ll do our thing.  Truth is, that’s the only option anyway.

On Depression

In light of the tragedy that occurred with Robin Williams, I’m going to stray a little from my normal topic of childhood mental illness.  Though certainly my illness began in childhood, as likely did Robin William’s, we are adults at this time.

I suffer from depression.  Technically, if we are going to go there: major moderate depression; “moderate” because I still shower.  That’s the distinction, apparently.  I, like many others who suffer, struggle to eloquently illustrate what it’s like to have major clinical depression.  Some have done a wonderful job, like Andrew Solomon in his sure to become a classic of modern literature, The Noonday Demon.  Rarely have I read so prosaic a compilation as he has put forth.

Explaining to my husband today, there is almost never a time where the thoughts about myself running through my frenzied mind are good.  The false facade I put out in cliched “Yay, me!” statements are couched in the realization that I’m an inadequate, lackluster, lazy, worthless person.  I spent years upon years in therapy, natural remedies, exercise, and medication.  At best, I get some relief occasionally.  Usually that is in the form of numbness, which isn’t necessarily an improvement.  Not really “giving a shit” about anything isn’t really great, especially when you have a family.

When I first heard about Robin’s passing, I cried.  Sobbed, actually.  I thought to myself, with all he has come through, all he means to this world, if he couldn’t feel it or own it, who will? He was definitely a bright light here. For myself, I’m not suicidal, nor have I ever really contemplated suicide, but I’ve certainly had plenty of thoughts that my presence here doesn’t matter much.  I struggle, most of the time.  I’m continually overwhelmed and exhausted and having two children with serious mental illnesses is extremely challenging, to boot.  I do my best, but I know how short I often fall.

The sad fact is that even my husband isn’t fully aware of all I go through.  Oh, he knows when I have particularly bad days, but he has no idea of the reality that is mine on a daily basis.  Really, what’s the point of talking about it?  You can’t make someone feel what you feel, or despair as you do, and who would really want to, anyway?  To what end?  What to do?  I don’t know.  I haven’t, even at 43, figured that out, but I’ll keep working on it.

I’m mostly putting this out there because I want anyone who struggles in this way to completely understand that you are not alone.  I don’t have answers, but I do empathize.  I am always willing to be available to offer some encouragement.

Peace to all of you,


Divisiveness Isn’t Helping Anyone

Having just read a Huffington Post article the other day, I was left with the same conclusion I often come to regarding the state of mental health: Our division is hurting us.  You can read the article I am referring to, here.

There is a lot to be said for the passion and drive it takes to advocate for persons with mental illness.  It is a thankless job rife with bureaucracy, red tape and a lot of road blocks. That isn’t stopping advocates from charging full speed ahead.  But, that isn’t what this post is about, really.  I say it because it is important to recognize that a lot of people are volunteering a lot of time and energy into making the lives of individuals better, but are also finding themselves at odds with others who seemingly have the same goal.

Sometimes, I think in our need to be “right” we miss out on the bigger picture.  People with very similar goals and different perspectives should work collaboratively for the good of all. Ought we really take such a divided stance to mental health?  I am constantly running across so much judgement in the field.  I am frustrated by it.  Why deny people their experiences?  Can’t your “truth” be as truthful as someone else’s “truth”?  Not only are we fighting stigma of society at large, we are fighting stigma within our own movement.  Meds vs. Anti-Meds, Assisted Outpatient Treatment vs. The Rights of Individuals, Behavior vs. Cognitive, etc., etc.  All of this and we are so far mired in the muck with not a lot of progress being made, we may never get out.

What would it look like if we could acknowledge each other and find common ground to take care of individuals with serious mental illness so they do not wind up homeless, in prison or dead?  What would it look like if we could place importance on education so that children could be identified earlier and given the best chance to battle a looming mental illness?  Why can’t we do both?  I don’t pretend to have all the answers.  There is so much need and so much that needs to be changed, sometimes it is nothing but overwhelming. Certainly, though, at the very least, there are a few key things that could go a long way in helping.  Some of the things are listed in Bill HR3717.  The need to redraft HIPAA so that parents and guardians have the ability to work on behalf of their mentally ill children is a big one.   We need to stop closing community mental health centers and mental health hospitals that facilitate programs to keep people off of the streets and as well as possible.  Not only do we need to stop closing them, but we need to fund them to the fullest extent possible to reach as many individuals as possible.  We need to find a solution to taking care of the most severely mentally ill that doesn’t include locking them away in a place, never to be seen again.  We need to stop stigmatizing the mentally ill by understanding they are fighting a very hard battle.






It Works!

Now and then we get some surprises.  This time, it was a mixed blessing, but still a blessing overall.  Stay with me and I’ll show you what I mean.

Doctors are finding surprising results from medications traditionally used for other purposes.  In this case, the medication is Cycloserine, a generic of a drug (formally under the name Seromycin) manufactured by Eli Lilly.  This drug is an antibiotic that does not carry with it the same risk factors as antipsychotics, SSRI’s, etc.  It was traditionally used in the prevention of tuberculosis.

There is a more in depth description of Cycloserine, here, where it also describes some uses.  For our part, our psychiatrist has used it for people on the autism spectrum, where it has, in his experience, worked to “open up” the verbal channels and promote speech in the non-verbal.

My 9 year old son has struggled with expression his whole life.  He has trouble connecting feelings with language and has always reacted to triggers without us knowing that he was even upset about something.  His affect has always been quite flat so it has been hard to see into his feelings, whether happy or sad.  He has never been able to verbalize any of what has bothered him appropriately, and has always historically resorted to meltdowns and unsafe behaviors without warning.

After a little more than a month on Cycloserine, there is a stark, remarkable difference.  All of a sudden he is keeping a “feelings” journal (what?!? really?!?) and speaking at length with his therapists about what bothers him at school, at home, with other kids, on the bus, you name it!  Here, you will have to understand that we had actually suspended outside therapy because we were making no progress with CBT (Cognitive Behavioral Therapy). My son could give all the “right” answers and talk the talk, but he could not speak about his own feelings or internalize anything that was being taught to him.  Even though I new very well there were sensory issues, the degree of severity with which some of these affect him are now becoming more clear.

This progress has been amazing and very helpful to all of us.  However, there has been a downside and I wanted to be transparent about that, too.  Even with other mood stabilizers in place, his mood has gone back to rapid cycling.  He is having meltdowns and some aggressive behavior.  Right now, we are tweaking his other medications to alleviate those symptoms.  Still, this result is not only what we hoped for, it is something I had almost given up on hoping would ever happen.

Thankful to doctors like our psychiatrist, who are always keeping abreast of the latest treatments, as well as really listening and understanding what we as families experience. Very grateful.



Dealing With Hospitalization

Over this long winter, I have been a part of several discussions about hospitalization. I say often that I’m not one to reinvent the wheel. Sometimes, you just know someone who ‘nails’ something.  Chrisa Hickey of The Mindstorm wrote a wonderful post about what to do if your child is hospitalized.  She has given me permission to repost.  If you have an opportunity, click above and go visit her site.  She has some great things to say!  Thank you, Chrisa, for all your advocacy!

This is a reblog of Chrisa’s actual post on her site:

Hospitalization How-To (When You Have To)

One of my kids was in the psychiatric hospital, or the “phosp” as we short hand it in the Facebook Support Group, last week.  It doesn’t matter which one.  Even though each of my kids with mental health concerns has, of course, their own distinctly different issues, the experience of being hospitalized, working on those issue, formulating a plan for aftercare, and discharge is generally the same.  At least for us parents.  Someone pointed out to me that, unbelievably, I’ve never written a post about what to do when your child is hospitalized.  As this is the 14th time I’ve had a child admitted to the phsop – not a badge of honor, I can assure you – I guess there’s no time like the present.

The Awareness

The first time Tim went inpatient, we were told by his therapist that it was necessary.  The next 10 times, we waited until he was a psychotic, raging, melting mess and we had to call police and paramedics to get him to go.  The last time (so far, knock wood) we decided that he was showing signs of decompensating to the point of being dangerous to himself / the rest of the family and worked with his doctor to check him in.  The first 11 stays were more than 20 days each.  The last was 4.  You might say that we’re slow learners ( you wouldn’t be the first), but we finally realized that waiting until he was a puddle of goo and beyond unhinged wasn’t healthy for him or anyone else in the house.  If you feel your child is decompensating, call your pdoc or therapist.  Start the discussion.  You know when it’s just an off day and when it’s becoming a trend.  That way you and your doctor can decide when a hospital stay can help stabilize your kiddo without having to wait until you find yourself, like I found myself, more than once, screaming, “That’s it! You’re going to the hospital!”


Getting There

There’s only three ways – you drive, the police drive, or an ambulance drives.  There are pluses and minuses to all three options.  Police can help calm an escalated situation and can call an ambulance for transport if that is what is needed to get your child to the hospital safely.  But it takes time.  The police have to come. They have to assess. Same with EMT.  And then there’s the extreme visibility to the neighborhood if police and/or an ambulance show up in your driveway which can distress you and your child later. But if it’s between you possibly getting brained in the car by flying objects or your child bailing out of a moving car or dealing with nosy neighbors later, please always opt for the choice that keeps everyone safe.


One additional note about calling the police.  Before you have a crisis, call your local police / sheriff non-emergency number and ask if they have  CIT trained officers or a mental health registry program.  If they do, register your phone number and address as the home of a person with a mental illness.  Then, if you must call for  help, you can tell the 911 operator, “I need a CIT trained officer, as I have a child in a mental health crisis.”  You will have a more positive experience with law enforcement and emergency personnel if you make plans in advance.


The Wait

The vast majority of psychiatric admissions are through the ER, whether your child arrives by ambulance or you drive him/her there. ER staff are used to dealing with crisis, but most are woefully unprepared / untrained  to deal with a child in a psychiatric crisis. If you arrive by ambulance at least you’ll get a room right away.  If you walk into an ER, you will likely try and keep your kid from coming unglued in the waiting room for an hour or more before you even see a triage nurse.  And, as great as triage nurses are, they will likely  have a difficult time understanding why you are in an ER for a kid who’s having a “tantrum” or a “meltdown”.  Once you get into a room you wait for a psych consult.  And you wait. And wait. If you’re lucky, you can, again, keep your kid from becoming unglued.  If you’re unlucky – like happened to us once – your kid will scream and rage and spit and tell the staff that you’re trying to kill him, which will bring a social worker to see you WAY faster than it will bring the psych consult.


Once you get the psych consult, there’s only one reason they will consider admission for your kid.  He/she has to be an IMMEDIATE DANGER TO HIM/HERSELF AND/OR OTHERS.  Just because your kid is so manic that he hasn’t slept in a week and has broken every dish and door in the house isn’t good enough. Just because she talked about suicide in vague terms every day for the past two weeks isn’t good enough. The danger has to be imminent (just ask Adrienne).  Even if they do believe your child needs to be admitted, the wait continues while they try and find a bed.  Or another facility. Or somewhere other than the ER.  I’ve had the wait be three hours.  I’ve heard it taking as long as FOUR DAYS.  Yep – you read that right. I’ve had more than one mom tell me about being stuck in the ER, sitting next to her child for days waiting for a bed to become available, while the ER staff did nothing to help her son – didn’t even give him his regular meds.


If you have a good pdoc and he/she can get you a direct admit, all the better.  Then you can avoid the ER nightmare. Our psychiatric hospital has a walk in assessment team so we can skip the ER.  It’s a godsend.


The Admission

Once you get a bed, then there’s the paperwork.  Be prepared to fill out a complete medical history, including an assessment of your child’s current mental state.  Bring his/her current meds with you so you know the dosages.  Your child will likely have to answer questions about his/her mood as well, and as hard as it is to help our kids by answering for them when they are unstable, do your best to let your child answer. You might find out that your child is more aware of his/her symptoms than you realize.  I know I did.


They will ask you what method you prefer they use to subdue your child, should your child become a danger to him/herself or others while in the hospital.  The choices are usually these three:


  • Use of a quiet room / seclusion
  • Use of rescue medication (oral and/ or injectible)
  • Restraint by personnel, mechanical restraints, or both

I tell them that is my preference – that order.  They will tell you that they will make “best effort” to follow that, and make you sign a waiver that says you understand they can use any or all of them as they see fit, and you don’t really  have a choice.  But know this, and be sure THEY know you know this – they can’t give your child rescue meds or use restraint without telling you.  If you show up for a visit and your child tells you they got an injection or were in a hold, and they didn’t call to tell you, raise holy hell.  Call the case worker ASAP.


You will likely have to sign several releases for your child’s school, psychiatrist, pediatrician, and therapist to receive information about your child’s condition and status while in the hospital.  My rule of thumb is all info to the doctors is fine, but school only needs to know that your child is in the hospital so his or her IEP and schoolwork can be sent to the hospital.  They don’t need to know anything else.  HIPAA law aside, in my experience, schools are the least reliable at actually following privacy law.


You will get information on what your child is allowed to have and what he/she is not.  Draw strings in clothing, belts, shoe laces, under wire bras, spiral notebooks, or anything that can be used to self harm are generally not allowed.  Our hospital doesn’t allow stuffed animals or outside blankets either, which can be hard on younger children. Your child will be strip searched.  It will be traumatic for your child and for you.  You will get information on how to call your child and what the visiting hours are.  Some hospitals have strict phone and visitation times, some do not, so be sure you know before you leave.


In some states, if your child is over the age of 14, your child must consent to his or her admission.


Here’s a little known fact: Psychiatric hospitals are not allowed to change your child’s medication without getting your consent before they change it.


Be sure they give you a schedule of the program.  You should know what your child is doing.  Also be sure they give you a telephone number to your child’s caseworker.  Each child should have a care coordinator or case worker and you need to know how to contact him or her. Know the name of the doctor assigned to your child, and his or her office phone number.


During Inpatient

If you’ve ever had a child inpatient, you know that the one thing all psychiatric hospitals suck at is communication.


Don’t let them get away with it.

Call your child’s case worker or care coordinator the day after admission and let him or her know your expectations as far as communication goes.  I expect a call daily. I ask if meds have been changed.  I ask if my child is participating in the program or is being allowed to sleep through it (which is a big warning sign that the hospital may not be so good at actually treating patients). I ask if my child has seen the psychiatrist, and when the first staffing is scheduled.  I ask to schedule the first family session, during that first call.  I ask the case worker’s hours because if I call my kid’s case worker and I don’t get a return call in two hours, I start calling every 30 minutes until I do get a call.  It’s amazing how well that little trick works.  Yes, I know I can be an annoying bitch when my child’s welfare is involved.  Tough noogies.


After the first staffing, I expect the case worker and the doctor to give me data, and lots of it, answering these types of questions:


  • What is my child’s working diagnosis? Is it different than a diagnosis he/she had before admission?
  • In what type of groups and/or therapy sessions is my child participating? General group therapy? Play therapy? Self-injury? What is the goal of the therapy sessions?
  • Do you have any plans to adjust my child’s medication? Why?
  • Have you been in contact with my child’s primary psychiatrist? If not, why not?
  • How is my child adjusting to the routine of the ward?
  • Has the school sent over my child’s schoolwork? Is my child working on it? If not, why not?
  • Do you have thoughts about the aftercare plan we can discuss now?

Visitation and Calls

Tim always had a distinct pattern when it came to phone calls home and visits while inpatient.  The first day or two inpatient, he would call us, say three words, and hang up on us.  The first visitation time, he would refuse to see us.  I still think it was his way of showing us he was in charge of the situation, even if he was in the hospital.  So be prepared for your kid to be pissed off or out of sorts or not ready to talk to you right away, even if he/she knew inpatient was needed.  Admitting you need to be hospitalized is as demoralizing and scary and embarrassing for our kids as it is for us. Don’t take it personally, even if he’s screaming, “I  hate you!” at 120 decibels into the phone.


On the flip side, try not to puddle when your child cries and wants to come home. They know how to tug our heart strings, and they’ll do it. They will beg.  They will promise to be better.  They will try and rationalize that they aren’t getting anything out of the program, or the program is stupid, or the staff are incompetent.  Be sympathetic but firm. If the program is sub-standard, you’ll know it. But unless the place isn’t safe or the program is horrid, there is no reason to take your kid outAMA.  Trust me – your insurance will take care of that soon enough.


Oh – speaking of getting your kid discharged AMA, be advised – most states have some law that allows the phosp to take anywhere from seven to fourteen days – not including weekends or holidays – to discharge a patient from a psychiatric hospital AMA.  Yeah, no joke.  Be sure you know what your state’s law is. I didn’t know and when I wanted to get Tim discharged once from a really, really horrible hospital, I was told it would take up to five days.  I sat outside the door to his ward for over five hours until they go tired of me sitting there staring at them through the door.  Sort of my own little protest.


Discharge and After Care


Aftercare is by far the most important part of any inpatient hospitalization.  Sure – your child has been stabilized by a hospital stay, but often the stay is short because your insurance will only cover until your child is no longer in imminent danger, whatever that REALLY means. Your child will likely need follow up care. It can take one of many forms:


  • Partial hospitalization / day hospitalization: Very similar to the day portion of an inpatient program. Your child would be in the hospital school-type hours, and work on the same goals he/she had inpatient.
  • Intensive outpatient: more like a condensed day hospitalization.  Typically this isn’t offered for kids, but could be an option for older teens.
  • Residential treatment: If you child needs longer term treatment, residential may be recommended. Kids in residential typically aren’t acute (meaning, not in imminent danger) but are still far from stable.  Residential can be anywhere from three weeks to, in Tim’s case, three years. It depends on the severity of your child’s symptoms and the structure they require to work towards stabilization.
  • Individual therapy: In some cases, your child may be treated in a classical outpatient setting as follow up.

In any of these cases, the after care plan should be agreed upon by you, the case manager, the treating psychiatrist, and your child’s primary psychiatrist if that doctor is different from the inpatient treating pdoc.  And, always, call your insurance company to be sure the after care plan is covered.  If it isn’t or you need help in getting after care services, call your county department of mental health services or the Federation of Families, who specialize in helping families of children with mental illness.



It’s Always A New Normal

Having just come off of Spring Break week, with all my kids home, I was struck by the constant change our family is always going through. When mental illness is present in your family, there is not a ‘typical’ day.

Times like Spring Break are especially difficult because when children who have trouble with transition or anxiety about change, it is difficult for them to shift from the everyday routine of school, where typically (at least in therapeutic schools) they know what to expect all the time. Suddenly, they are back with a week of unstructured time and it is difficult for them to handle.

My two boys that suffer from mental illness have always had trouble occupying themselves and want constant entertainment. It doesn’t matter if you do one thing in a day, or ten, it is never enough. They want to be constantly moving sun up to sun down. Add some incessant questioning to that, “Where are we going?,” “What are we doing?,” all day long, and it is a recipe for stress. That, of course, does not even account for the meltdowns.

When we began homeschooling my oldest at age four, I believed we would do it forever. I love homeschooling and treasured having my children around all the time. We even continued to homeschool through my oldest’s most difficult times, in the throes of psychosis and varying behaviors. When my third child began displaying many symptoms of mental illness, just as my oldest had, I knew that I could not keep up what I had previously been doing. I wasn’t even sure that it was healthy to do so. When every single day is a huge battle, it is very wearing, and not just on a caregiver. My two neurotypical children were having significant difficulties coping with the household chaos.

Now, all these many years later, three of my children are in special schools and my daughter is the only one left homeschooling. We are in a transition phase as many of her homeschooled peers are now going on to high school, and she is going to enter her 8th grade year. While I know that she is equipped to handle the challenges of high school if she wished to go early, we have decided she will continue to homeschool, at least for the year ahead. I am leaving space open for whatever she chooses, to go to high school, or homeschool through.

My oldest son is successful in his therapeutic school, but still struggles to make friends. He feels lonely much of the time and even though he attempts to put himself out there, he is not finding the friendships he so desires. My third son faces the same challenges. He is doing very well at school, but socially is struggling terribly and is very lonely. My youngest, struggling with some learning disabilities is having success in school and likes it, thankfully. This is not the picture I held for any of my kids, however, it is our reality.

When one son is doing well, the other generally isn’t. It is an up and down roller coaster of emotion and chaos. We never know what each day is going to bring, and I am just thankful for the days that are relatively peaceful.

Then, there is the question, “What is normal, anyway?” Well, of course, the answer to that is, there is no normal. All everyone does every day is the best they can. I’ll confess, “normal” wouldn’t appeal to a homeschooling, alternative health promoting, non-GMO advocating, tree hugger, anyway. I’ll settle for okay.