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Bodhi Went (Bury the Lie)

 

There is a corridor that runs from the vestibule of UCLA Resnick Neuropsychiatric Hospital’s “4 West” to what is now called “Unit C” but in Jani’s day it was called “Swing Unit.” To the right is the child and adolescent eating disorders unit and to the right is the adolescent unit. Windowless, it reminds me of an airport jetway. When you walk it, you don’t look to either side. Your eyes are focused on where you are going. You don’t blink. You just watch the doors to Unit C get closer and closer until you are there. A nurse pushes the door open and you are through. I swear the lighting dims but it is probably just a visual representation of the feeling of blackness. The world seems darker. You never look back at the door closing behind you, although you hear it. And your world feels smaller because it is. To enter Resnick, although a beautiful hospital that looks more like a hotel than a psych ward, is to go through a series of compressions: hospital to floor, floor to corridor, corridor to room, room to chair, chair to yourself.

 

Coming out is not the same. You rush out, like a diver trying to fight his way to the surface because you know the bends are coming. There is no point in stopping to decompress. You know it is going to hurt like hell. And the worst part is you know it won’t kill you. You have no hope of passing out, of blissful unconsciousness. It’s like a kidney stone. You’re gonna have to feel it.

 

I have walked that corridor probably hundreds of times now. I’ve walked it when Jani was being admitted, I’ve walked it to visit her, I’ve walked it to visit her friends, I’ve walked it when it time to bring her home.

 

Tonight, I walked it again, acutely aware of the little hand in mine. Because it was not Jani’s hand.

 

It was Bodhi’s.

 

Bodhi went to the place only Jani has been to now.

 

My little man is inpatient. My little man is without his family. I have no idea how he is doing. I pray he is asleep but I am too chickenshit to call and find out. I am terrified of his fear, of hearing him scream for Mommy, for me, for Jani.

 

I didn’t even say good-bye. Once I knew he had his one-to-one, once I saw the nurse with him, once it was time to go, I began to break. In all the times I left Jani there, I never cried. Later, when I got home, in the dark of her empty room, yes. But never on the unit. I suppose because I knew she would be okay there. She was safe.

 

But this time, as soon as I turned back to look at him, playing cars with the nurse, as soon as I saw Bodhi and not Jani, it was too much. I started to cry, that cry where you squeeze your eyes together trying to fight it back so you don’t make a sound. Our friend who went with me grabbed me and rushed me toward to exit. In a fleeting thought between the waves of pain I realized she was touching me, something she had never done before. I am not a hugger, except with my children. When somebody puts their arms around me, that is a sign that whatever façade I think I have left is gone. I banged on the glass of the nurses’ station to be let out. I was already crying, whimpering, but I had to get out before the Wail. Down the corridor. Eyes are blurry and sting. Snot already fills my nose so I can’t breathe through it. Halfway down, I think I make a show of wiping my eyes, but I think I start to bend over. Crying. Crying. Get me through the second security door into the vestibule. The nurse looking back to make sure the second door closed before the outer door can be opened. Out into the unit. Crying freely. Hand over my mouth. Can’t breathe. A large group of people, a family, clearly there for somebody in the ICU directly opposite the psych unit (whole families never come to the psych unit but when Grandma is dying every cousin and their fucking cousin comes). They are not crying but I am. Into the elevator. Can’t look at myself in the reflective glass of the inside of the elevator. Out. Down the central concourse.

 

And I sit down and ball.

 

It wasn’t supposed to be like this. It wasn’t supposed to be him. It was supposed to be Jani. Bodhi just had autism. Jani has schizophrenia. Yes, autistic kids have been on the unit before but they are the 12 year old non-verbal in diapers kind. Bodhi is my baby boy.

 

Of course, Jani was my baby girl once.

 

This wasn’t my intention. I took him to UCLA for a neurology consult, to get the EEG his psychiatrist wants. Maybe he is having seizures. I wanted him checked out physically because he doesn’t cooperate like most kids and he had been complaining about his mouth hurting and his tush hurting.

 

I should have known. I didn’t go in with Bodhi. I was providing my insurance information. I even handed over my debit card to pay the $50 copay my insurance requires for an ER visit when there is no admission. But the woman gave me my card back.

 

I should have known then. There is no copay if the patient is admitted from the ER.

 

I go back to triage and ask the nurse to take me to Bodhi. I follow her. I keep expecting her to turn off into one of the dozens of rooms.

 

I should have known then. I should have known when she pointed to the double doors at the back of the ER, telling me to turn left right before them. Only then did Bed #00 connect in my mind.

 

#00, #01, and #02 are the psych hold beds.

 

No, no, no. Bodhi needs a neurologist. His psychiatrist wants him to get a neuro work-up.

 

I should have known when talking to the neurologist, the attending psychiatrist puts his head in.

 

“Oh, I’m sorry,” his says to his neurologist counter-part.

 

“No, it’s fine. I’m about done.”

 

“It’s okay. I’ll wait.”

 

I should have known then. Psychiatrists never wait for anybody.

 

“I don’t see any epileptic activity,” the neuro says to me.

 

“I’d like him to get an MRI. What if there is a mass there? What if that is causing the behavior?” I ask.

 

“I mean, there certainly could be,” like I am child and he just accidentally told me Santa Claus doesn’t exist. “We’ll check that out. But he’s not showing the signs I would expect to see…”

 

“would expect to see…” Same thing UCLA said about Jani and autism four years ago. “Not what I would expect to see.”

 

I should have known.

 

“He’s got good muscle tone. No limpness anywhere. Eyes tracking.”

 

Should have known.

 

When the psychiatrist comes in, he is immediately interrupted by his cell ringing. Usually they just check the number and put the phone back in their pocket.

 

“Ah, excuse me,” he says, seeing the number. “I have to take this. It might be Dr. Howe calling back.”

 

Dr. “Howe.” Jani’s outpatient psychiatrist in January First. Bodhi’s as well. The one who diagnoses him with autism.

 

I should have known.

 

UCLA always talks the outpatient doctors. But Dr. Howe isn’t in the office on Friday. The UCLA doc talked to her for a long time. Twice.

 

I should have known.

 

He sees Bodhi, who is actually calm at that precise moment. He tells me he is going to talk to “the team.”

 

“The Team” are the faceless doctors you never meet who make the decision about whether to admit.

 

About an hour later, he comes back. “Okay, so I talked to my boss and I am going to have them bring you paperwork to admit him.”

 

It takes me a second to process that. “What?”

 

The psychiatrist looks up at me, surprised. “I’m sorry,” he says, “I just assumed we were all the same page here. You do want to admit him, right?”

 

He’s a psychiatrist. Not a neurologist. Bodhi isn’t going to neuro.

 

Now reality hits. I think my mouth is hanging open. I don’t know what to say. This has never happened to me before. Every time I have come here with Jani I’ve had to fight tooth and nail to get her admitted and yet without me even asking they want to admit BODHI?

 

“Does…does he need it?” I think I finally manage.

 

Now I can see that the psychiatrist realizes I wasn’t prepared for us. He looks to hi right as if there was somebody there who could help him.

 

“Ah, I’ve talked to the team and we all feel like it would be a good idea for him to be admitted.”

 

Only later could I process that it wasn’t even this easy to get Jani into UCLA. At the time, I was in shock. I brought him in, expecting them to take some blood, sedate him, and give him the EEG. Never did I ever expect that Bodhi would not be coming home tonight. I’d even said to every doctor I had seen “If this is behavioral, fine, we’ll deal with it. I just want to make sure it isn’t something physical.” I wasn’t even looking for meds.

 

Looking back now, I was delusional. I had gone to UCLA because I feared for Bodhi’s safety at home. You can see the video.

I was afraid he was going to hit his head in one of those states and crack his skull open. I was afraid he was going to run out the door (in a second video I uploaded but Youtube deleted, probably because Bodhi had just gotten out of the bath and was naked-I thought nothing of it but obviously somebody flagged it. Probably some kind citizen wanting to protect Bodhi’s privacy when he and Jani turn out to not really be mentally ill and write their own books about how Susan and I exploited them for fame and money-look for it on your Kindle in 2020 and 2025 when Jani and Bodhi are legal adults, respectively).

 

“Look, it is totally your decision,” the attending psychiatrist says to me. “If you don’t feel comfortable…”

 

No, I don’t feel comfortable.

 

Not even comfortably numb.

 

“…but I think it is a good idea.”

 

By the way, Bodhi’s tush hurts because he keeps sticking his finger up his rectum in a panicked state.

 

Not this again.

 

It is happening all over again.

 

Every other word out of my mouth was “autism.” Both the neurologist and the psychiatrist nodded. Both asked me to confirm that Bodhi actually had been officially diagnosed with ASD. But it was in a “You sure?” tone of voice, like when you tell a friend a story and they don’t believe you but are too polite to say anything.

 

That was all they asked. Neither brought up autism. After I walked that corridor with Bodhi, the intake nurse asked me what his triggers are.

 

“They aren’t consistent. Sometimes it is because we don’t have a pink Starburst. Another time it might be because we don’t have teal-colored candy.”

 

“I mean, like some kids are set off by crowds, loud noises…..” the nurse said. “Anything like that?”

 

Only now does it occur to me that Bodhi is the only autistic child I have ever met who loves Chuck-E-Cheese. I’ve never seen another young autistic child handle the bright lights and noise for more than 10 minutes.

 

And then I realized why the doctors didn’t ask about autism.

 

I should have known.

 

UCLA is one of the premier autism research facilities in the world.

 

“He has some ‘autistic-like’ behaviors,” the psychiatrist had told me.

 

But Dr. Howe has been sticking to autism for two years now.

 

There is a difference between “autistic-like behavior” and “autism.”

 

I wanted Bodhi to just have autism. That’s not so bad. I could live with that.

 

But he doesn’t.

 

The psychiatrist and the neurologist both asked many questions about mental illness in the family.

 

Yes, a cousin of a cousin spent his whole life in Napa State because he used to scream all the time.

 

But that is not Bodhi. Bodhi is not 1946. Bodhi is now.

 

Bodhi is not Jani. Bodhi can’t bathe himself (Jani can at least run a bath and sit in it),  he can’t dress himself, he can’t really feed himself, he can’t go to the bathroom by himself.

 

“So he’s not potty-trained?”

 

“Well, he is. But you have to prompt him.”

 

“So like give him reminders?”

 

“No, you have to take him to the bathroom, pull down his pants, and position him.” Otherwise he just stands there.

 

Bodhi is smart, but has the verbal capacity of a three year old and about the same abilities. He needs help for everything.

 

When Jani first went to the hospital, she was so psychotic she didn’t care. By that time the psychosis had advanced quite severely. I held her as my baby girl but in my heart I knew my baby girl was having her mind eaten away.

 

I don’t see that with Bodhi. All I see is panic. Frantic rage which nothing can satisfy.

 

But just as I was deluded five years ago into thinking I alone could keep Jani ago, I fell into that same delusion again. I can take him home and keep him safe.

 

But that is the difference between a real delusional thought and the vernacular use of the word: Jani’s delusions never go away. She still believes in 24 Hours and Eighty.

 

My delusions get shattered by reality.

 

I am five years older. Bodhi is as fast as Jani and stronger. I am tired. I am getting complacent. I am making mistakes. And one of those mistakes could kill Bodhi.

 

In the end, I left him at UCLA because (and I keep trying to tell myself this) he is safer there than he is here.

 

So in the end, as I sat in the concourse, balling my eyes out, I was crying for many things. I was crying for Bodhi, that this happened to him. I was crying, hating Susan for being right, again, when I so desperately wanted her to be wrong. I was crying for myself, feeling a pain so great that for a split second I actually wished I had never had children. And I was doing what every parent who does through this does: remembering every shitty thing I ever did to Bodhi, minor though they are compared to Jani, and hating myself.

 

Because I am afraid. I cannot shake this fear that I will never hold him again. It’s not just that I am afraid I shattered his bond with me (although I am very much afraid of that, too. I was afraid of that with Jani, even though it turned out to not be true). It’s that I don’t know what his life will be like now. When I thought he had autism, I deluded myself into thinking I knew.

 

And now I know nothing.

 

Only one thought keeps ripping apart my soul.

 

Did I give him a good life?

 

Did I do enough?

 

And no matter how good of a parent I may have been or will be, the answer for me will always be “no,” as it would be for most of you parents.

 

No matter how much you value someone, no matter how much you love them, it will never seem like enough when you might be losing them.

 

Am I losing Bodhi?

 

“You got Jani back!” you say.

 

But they are not the same, are they?

11 comments on “Bodhi Went (Bury the Lie)

  1. Don’t worry, MIchael. He will get better, I know it. It will take finding the right medications and correct diagnosis so that things will get better. I am sorry about this, I know how it feels. I am thinking the prozac either revved him up, or his symptoms just worsened. Right now, I see either Bipolar with psychosis, or Severe OCD. Did they rule those out yet? I don’t see Schizophrenia in Bodhi. I saw Schizophrenia in Jani, however, Bodhi is different–although suffering as much as Jani. Please, don’t give up. I am visiting on Saturday during the second week of April. Hope things will be better by then and I will be glad to help out in anyway possible

    Best,

    your friend–Ruben Rafayelyan

  2. I am so sorry for what your family is going through yet again Michael. I´m not really acquainted with Bodhi’s previews diagnosis, but one can only hope that schizophrenia it´s not part of it. Don´t jump into conclussions yet. It is easy to do so, when you see Jani´s story, but everyone is different, and although Bodhi may have a mental illness outside the autism disorder, it may be an ocd or bipolar disorder. Until you have a real diagnosis for schizophrenia you can still have hope that his diagnosis will be less severe. And if it turns out for the worst, then you and Susan will find the strenght to pull through. Aside from your circle of friends you have a lot of followers that support you cause and will try to help.
    My fear with Bodhi is that everyone might jump to a schizophrenia diagnosis, just because the´ve seen it with Jani, and it may cloud their judgement into looking for another illnesess. Just have an open mind and question every bit of information they give you until you are completely sure they are working with him without any prejudice or missguided information.

    Try to be strong.

    1. No, I don’t think anyone will jump to schizophrenia. This is like Jani back in 2008. We don’t know anything.

  3. I’m so sorry to hear about Bodhi. I’m sure he’s in good hands and they’re working hard to find out what’s wrong. I was watching the video and my eight year old son came up behind me and asked what Bodhi was upset about. I told him that he wanted some teal candy and that it didn’t exist, it was something he imagined. He dug through some candy we had laying around, desperate to find a piece of teal candy to send him. He said, “I know why he feels that way. I bet he tasted it in his mind and now he really wants it!” He completely understood his frustration, even though he’s what you’d call neurotypical I guess, other than mild ADHD. He just felt so bad that Bodhi couldn’t get his candy. I wish I could say something to make you feel better, but just hang in there, though I know you didn’t want to have to walk this path again with another child. I hope your little guy gets a diagnosis and starts feeling himself again.

  4. Hello Michael,
    It’s me- Maria Grace. I hope you still remember me and my family.
    First of all, I’d like to ask if you need any financial help, my family and I could help you if you need any donation.
    Second, let me tell you that I totally understand this difficult episode of your life: It is horrible, it is shocking, it is dark, it is horrid, it is terrifying, it is depressing, it is frustrating, it is irritating and most of all: It is extremely frightening.
    Let me tell you that me, as a Panic Attack sufferer struggling since the age of ten with the most horrible forms of panic attacks, I understand totally your fear and Bodhi’s fear. I am right now feeling some fear out of this situation, in my life I’ve learned to hide my fear to survive- But that is not yours or Bodhi’s case, your fear definitely is worse than mine, your fear is out of something real, mine is a fear out of no reason and for survival, I must learn to avoid all types of fear.
    I saw the video and it reminded me a lot of my brother, he is way bigger of course, he is a giant 6 feet man who isn’t skinny, and when he gets his attacks he gets really bad and my father and mother tell me to hide and they both try hard and with all their strength to calm him down, and after a long battle, a reaaaaally long one, he calms down.
    Michael, my brother also stayed in a hospital for a bit more than a month, my parents had that same fear and indeed, my father has been through a horrible valley of the shadow of the death just like you are going through now…He knows how that uncertainty feels, uncertainty always brings fear, a deep one.
    Unlike most people would do, tell you that Bodhi will be fine , I will not say that because I don’t know how he will get: He could come out healed and without a single problem due to a miracle of God, even if you don’t believe it could happen, there is always a chance it could.
    Or maybe he comes out slightly better, maybe better, maybe a lot better, maybe he comes even worse, maybe he comes really worse- Who can tell me?
    The doctors told my parents many things about my brother, even when he went to stay in a Hospital, and none of what they predicted was right- Reason why I can’t predict what can happen to Bodhi.
    I will not ask you to stop fearing either, that is impossible, I won’t ask you to calm down, which is impossible to do now…I will only ask you something:
    Keep living for both Bodhi and Jani and Susan. Keep fighting for them no matter what the future is holding for you.
    Jani was saved, you didn’t lose her, she was truly saved by God, be always thankful for that.
    And Bodhi, no, they are not the same, try to do everything to keep him alive, if you need any help tell us, and we will help in every way we can- And if there are things we can’t do, like take your family’s fear, suffering and Bodhi’ s suffering away, we will pray and I will keep praying, I hope and believe God will listen: He listened to me when I asked for my brother, He listened to you when you asked for Jani.
    Now you might tell me that God took away other children.
    I can only tell you: Bodhi is still here, and let’s keep praying and believe when we pray.
    Bodhi isn’t gone, don’t lose your faith, don’t lose your hope- Things could turn out better, and if they get worse, they shall get better after that.
    Because life is a cycle, good times and bad times come, that is something my family has noticed after a nearly 20-year-struggle with my brother: Now, it is being a really good time for him, we don’t know what will happen after this, we keep praying and God answers, but bad times could come, and we must try to help him, keep him safe and happy.
    The battle with mental illness is a horrible, long and strong battle, it isn’t an easy one- I am in this battle with you, I will pray for Bodhi’s welfare at the hospital, I believe they will help him, I believe (out of what I have read) that this is an easier case than Jani’s, yet I don’t know, I cannot predict and I cannot tell you if it is easier or not.
    My brother was also diagnosed with “signs of autism” yet “not autism” at the same age of Bodhi… Maybe my brother was a bit older.
    Bodhi is five; my brother started speaking at the age of four, and from what I’ve seen in the video, Bodhi is definitely more verbal than my brother at that same age. Yet my brother wasn’t aggressive at all at that age, my brother was just hyperactive.
    I understand your fear for Bodhi’s self-harm, I have had that fear and my family has had it for my brother, I also understand his wish to eat teal candy, something that doesn’t exist and he wants it to exist and gets frustrated when you tell him it doesn’t exist.
    Why? Because my brother does the same now.
    He doesn’t ask for teal candy, he just imagines in his mind that there is a girl called Ana Sofia that he will meet her when he gets 25 and she will be 21, and they will marry later. This girl lives in Spain.
    This girl doesn’t exist, he imagined her and he believes he exists and that they will marry and have three children: When I was 10, I would tell him that Ana Sofia didn’t exist, and he would, omg, turn so violent, thanks to God he is fine now.
    I don’t tell him that anymore, and the psychiatrist tells us to “keep telling him “yes” when he speaks about Ana Sofia and don’t tell him that she doesn’t exist”. Like, no connection with reality.
    Of course, you can’t make this with teal candy, and I wouldn’t like you to lie to your son, we were forced to because there was no other way, I understand when you say “There is no other way”.
    I understand that as a parent you feel like you failed, and remember all the things you did wrong: My parents have felt like that too, I have felt as a sister that I am not a good sister for my brother, that is completely normal and understanding.
    But I assure you something: You haven’t failed because Bodhi is still there.
    If anything in the past happened wrong, you can still change the present, try hard to help Bodhi, we will help in anything we can help.
    Don’t give up, even if the world IS falling, don’t fall with it and protect your two kids and wife with all your strength.
    Don’t forget we are here, we remember Jani, we remember Bodhi, we remember Susan, we remember you.

    “For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life”- John 3:16

  5. I’m sorry about Bodhi. But try to look on the bright side: he’s safe in the hospital, he’s getting the help he needs. Hopefully he’ll get the correct diagnosis and meds and get stabilized faster than Jani did.

  6. I’m so incredibly sorry to hear of Bodhi’s troubles. I just finished January First and it’s the first book that was actually hard to read (for me) because my heart was breaking for this little girl and her family. I don’t know how you found/find the strength that you have but I am amazed at how well you’ve managed. You might not think that you’ve handled it well but there are alot of people out there that would not have handled any of it. It would’ve been much easier to institutionalize this beautiful child and I am so thankful that it didn’t happen to her. She is so blessed to have such a loving family and so is Bodhi. I am saying a prayer for all of you and hope that your family will be reunited again soon and that Bodhi may get the meds he needs to give him a better quality of life…

  7. In 23 years i have had somewhere between 6 to 8 diffrent lables. Although my volients was and is almost always self inflicted, I can only imagine your fears. My parents would be better judges of that, I can only really speak for my self and maybe a bit for Bohdi and others like him, I am not wonderful with putting words in sentences but I did write this poem and perhaps it will help. Best of luck anf God bless
    Trying to protect your family from the demons no can see
    From the harm that they crave to give
    How am I suppose to protect you, I so young
    I do not understand, I only see, hear
    I try to run, but there is nowhere to turn
    I cannot escape, you cannot escape me either
    I know not what to do, who to listen to, where to turn
    I turn in, for with the demons and ghost are fairies and dancers
    The beauty is there with the ugliness, I try to share that with you too
    But you can’t see my world, you only see the bad, the terror
    How am I to protect you, I so young and so lost too you

  8. My daughter, now 22, was diagnosed at the age of 4 with ADHD and PDD NOS (which means something is not right but doctors dont know what nor how to fix it). It was later she was diagnosed with Autism. To be honest, at first I felt relief to have a name for it, to be able to explain to others who thought I just let her misbehave. But, that was before Autism was the disease of the day. Back then, I had to fight to get her services at school – who just wanted to pass her through – and elsewhere. Most of my limited disposable income as a single parent was spent on therapies or copays. Both my daughters grew up in waiting rooms, therapy rooms and doctors offices and hospitals. When I finally convinced the pediatrician (who insisted she would eventually talk) that we needed speech therapy and a neurologist and a psychiatrist, I was at wits end. The psychiatrist told me if I was trying to medicate her to “tame her” she would call social services; thats what I got for confessing hopelessness with my 4 year old who would pick up heavy objects and hurl them at me and her baby sister. The neurologist ordered a MRI and EEG which she couldnt sit through and they refused to sedate her, but he wouldnt see us again until she had the tests. Thank goodness the speech therapy helped her to find words and the tantrums lessened as she learned to communicate. Three neurologists and OT, PT, music therapy, psychology services later, we found a new neurologist who treated her anxiety (buspar) and wahlah…I had a new daughter. Thought not “cured”, once her anxiety was under control, all those therapies kicked in finally and she put into practice what she had learned and “stored” all those years. Her KaylaSpeak (kind of like Yoda, “where did it go my shoes?) lessened. She learned to read and to this day is an avid reader (Twilight Series her favorite which she, in true autistic form, can describe in detail, for hours). She could sit in class for longer periods of time and I am amazed at her knowledge base for someone who looks like they are not paying attention. Her unique skill is why I do not need a GPS…as long as I have Kayla in the car. At 5 she could describe the route to get to my parents house, some 400 miles away. She knew the neighborhood better than I and it was a lot of, “Mom, you have to turn up here” and “Mom, you went the wrong way”. For all autism can be, the GPS thing is a handy feature. In high school, she did what “they” always told me would never happen, she had friends. Four of them. They went to prom. She had a crush on a boy, she danced and had a good time. She said her friends understand her. That circle of friends allows her the freedom to try to connect with others to this day. Sure, she is a little bit different, but aren’t we all? I never told her she had autism because I didnt want to think she was different or “wrong” as compared to others. However, in HS, her teacher told her. She came home angry at me for not telling her. She said she is glad she knows what makes her different. I told her then and often repeat to her the parts of her autism I love, the GPS, keeping us all on schedule, her determination when her mind is set on something and her acceptence of others who are…different. I believe she will live on her own one day with support. She has already purchased a number of items for her own place, an old-fashioned hope chest of sorts. What kid does that nowadays? Why am I telling you this? For hope. When K was a tot, I had a hard time imagining the future of this little whirlwind who didnt speak, wouldnt cooperate and often retreated into her own world, leaving us out. But, now I look at her and know that struggling to find the right medications takes forever but is essential. I know the more therapies, the better. Even if they do not seem like they are working. There are so many schools, even public ones, that are staffed with people who know how to interact and teach kids on the spectrum. Adult services has a long way to go, but we remain fighters/advocates knowing the squeaky wheel gets the grease (my moto through the elementary years). I became a bit of an expert on special education thanks to Wrights Law and the countless seminars I attended. I learned how to handle her moods and actions through reading on the internet other parents journeys and what works, what didnt work. I want to encourage you to keep working to find the right fit for Bodhi.

    Finally, I wanted to thank you for the honesty in your book. I too often felt like an outcast, judged by other parents who kids were “typical”. They got to chat at playgroups, I got to chase my kid down the street or insist she put her clothes on or try to take turns on the slide. My family didnt or couldnt really help, I am not sure which. Alot of it denial I think. The social worker for the county board of developmental disabilities was my lifeline. I found another parent with a special needs child to commiserate with and we could visit with our kids without explaining the inexplicable tantrums or odd behaviors. One thing I learned though is I should have taken better care of myself. Her autism is here for the long term and she needs an advocate long term. I do not want her sister to take over and live the life I do taking care of her and so I search for a new network to take over as my body/energy fails. Certainly more word needs to be spread about mental disorders and illnesses so our kids are not ostrasized at any age and they get all the help and support they need throughout life.

    I am praying for you and your family to remain strong and fight for both Jani and Bondhi. And I hope you take much needed respite REGULARLY; you will be the better parent for it and that will benefit both kids in the long run. Take Care. Allie