Screw Geometry

A year and a half ago I had a kid who wore suits, ties, bow ties, suspenders and instead of carrying a back pack he carried a brief case.  My son wanted to go to UC Davis and study automotive engineering.  He was weird and aspie like and socially awkward and sometimes explosive.  This has been my boy.  Since he was in early elementary school my son has been awkward, different and filled with high expectations of himself and wanting me to help him reach his goals and aspirations.

Over the last year this young man was swallowed whole by mental illness. His hair is long and unkept looking, he wears messy clothes, wrinkled, maybe clean, maybe not.  He wants to direct films but his aspiration to go to college is gone.  It is too overwhelming to think about going to college.He doesn't think he can manage himself enough to aspire to a whole lot anymore. He has lost confidence in himself and any self drive or motivation is gone.  He was failing his geometry class and I have been pushing him to stick it out and I brought it up to his therapist who said to remember all that my son works through in a day, do I really want to push him through geometry right now?

It's a conflict inside me, I have known my son to want so much for himself, to push himself and when the mental illness kicked in it ate this part of him.  I don't know what my role is as mother...do I let the old child, the one I have fought for, helped, listened to his dreams, go.  Do I allow this new, unmotivated, messy, uninspired kid destroy some of my son's potential?  Is it the same kid?  If he had cancer, would I give up on his pre-cancer dreams for him or would I hold them aside until he got better and then help him get back on track?  How do I let go of who I knew my son to be and what I KNEW his goals and dreams were?

On the other hand, is it really worth it? Is geometry REALLY that important right now?  This kid is struggling with instantaneous mood swings-hard.  He is battling delusional thoughts and mild hallucinations.  He is socially awkward and the most horrible time in life to be socially awkward-adolescence.  He is trying to find reason to simply keep breathing right now. Who the hell cares about geometry right?  I mean, if he can get through this alive, can't he take geometry later?  If I am going back to law school in my mid 40's, can't he go to college later if he decides to do that?

The real fear here is that I am in the land of "I don't know".  I don't know how this will turn out, if my old son will return, even in part.  I don't know if he will be okay or if it will continue to get worse and the mental illness will eat more of my son.  I don't know how to reassure him or ease his fear of what is happening.  I don't know how to guide or parent him through his anger and confusion. I don't know how to help or how to stop it.  I don't know what to let go of, what to hold on to and what to fight for.  I don't know that he will make it through each day.  I don't know how to breathe without feeling so many different emotions crushing on my heart.  I don't know where to look for hope.  Screw geometry.  Just give me hope.

Sometimes Bipolar is funny!?

I have a tendency to find humor for safety.  I feel it is much easier to laugh at things then lament over them.  don't get me wrong, as I have stated in these blogs, my face leaks and I feel sadness, anger, grief, etc.  One of the tools I use to keep me going is simply to look at the situation and find the humor.

So there are the moments when my son is manic but does not recognize the mania before it becomes too intense that make me chuckle.  Bless his heart, he can sit there rocking back and forth in a chair saying over and over and over again, "I'm so happy, I'm just so happy...ha ha ha...I'm so happy" and when you ask him, "Do you think you might be TOO happy, son?" He says, "NO! How can you be too happy!!!"

Well, these moments come a couple of times a week and it is important to remember that the person with mental illness does not know when their crazy is showing, kind of like the person unaware of the toilet paper on their shoe or that woman who tucked the back of her dress into her panty hose.  It's funny and still a little bit sad but you just can't help but laugh.  One night while I was in law school, he decided to play hide and seek...but he didn't tell anyone.  Okay, seriously...that's funny!  Finally, after realizing it was too quiet in my house, I came out and asked the respite worker, "Where's Lexi?" and she looked around and said she wasn't sure.  Shortly thereafter, not getting anyone to hunt him down, he decided to storm our house. Yep, the neighbors loved that one.  Again I tried to ask, "do you think maybe this might be a bit manic, honey?" and I got a resounding"NO! I"M JUST  REALLY REALLY HAPPY!!!"

He has found a friend at church, older then him, who also has bipolar and he loves to go hang out with him and talk to him.  I never fail to crack myself up by asking if he and his friend are planning to talk about their ups and downs.  It's just too easy.  Sometimes when he comes home from school I use the same joke, "How was your day honey?"  he will reply, "I don't know, okay I guess." and I have to throw back, "up and down?".  Really, it's all for self amusement! Sometimes he catches it but most of the time he doesn't.

The easiest humor is in the hallucinations. Yep, he has gotten so delusional he hallucinates.  Now, when he has the hallucinations, they are not funny BUT this does not stop me from making light of them AFTER.  Seriously, hallucinating is scary and embarrassing stuff so I like to diminish the power of it's fear by finding humor.  At one point he was hearing whispering, it wasn't clear, couldn't make out what it was saying, just whispers.  So for this one, my daughter and i have decided we want to get a really good sound system in the house where we could whisper in to speakers around him wherever he goes things like, "beeeee niiicccceee to your moooottthhhherrr...cllleeeeaaaannn your ssssiiiiissstteeerrsss rooooommm" and see what will happen.

One day he also hallucinated a red basketball.  A really benign hallucination but he was sure it was there.  Hard to explain how these things happen but trust me, it happened.  So, we have since looked for the basketball and have not yet found it in our plain of reality.  I laugh and tell him if he ever is really messing with my head, I'm going to go buy a bunch of red basketballs and hide them all over the place, in his bed, in his seat in the car, at the diner table, etc.  I still might actually get him a red basketball for Christmas.  He totally laughs at this I promise you.  The red basketball became a very analytical moment in our discussion of hallucinations and how the brain works but because it is so harmless, I so want to play with it to help diminish his fear about his hallucinations.  Don't you think it would be funny to get a red basketball for Christmas?  I do.

I have been dealing with the funny of autism for years and have so much material on "sometimes autism is funny".  I got tired of people thinking autism is a tragedy.  It is not.  It is just who they are and if we treat them like they are a tragedy then they won't learn to accept themselves in any other way.  It really is funny when my daughter and I went to the grocery store and he started to flip out so I would escort, carry etc him to the car and close the doors and lock him in until he calmed down.  He was safe but couldn't open the doors without setting off the car alarm so he would tantrum in the car wildly like the tasmanian devil.  The car would rock and there was faint screaming heard and my daughter and I would sit on the curb watching him, waiting patiently for him to calm down, chit chatting.  Sometimes the tasmanian devil would come out while we were driving.  On our way somewhere and all seatbelted in and safe, he would just start screaming, and hitting the car door, the seat and fighting his seat belt because something irritated him, the sunlight, the seatbelt, the smell of the car, the sound of a motorcycle, etc.  My girl and I just ignored it, she quietly whispers sons to herself and I calmly sit like it isn't happening and listen to my NPR.  I always giggle a little and wonder what the folks staring at us might be thinking.  Ha.

The point is, it isn't all tragic.  parts of bipolar, autism tourettes suck BIG but parts are funny and we need to honor that.  I can't hug my son, our bodies can not touch, he flinches at the human touch like I am poison to him...doesn't feel good as a Mom but is it fun to tell him if he doesn't clean his room he has to hug me...yep.  Let's laugh a little, lets use the humor.  It helps others feel more comfortable and it helps US feel more comfortable.  I hate bipolar and I hate autism some days but at the same time they have expanded my heart and soul.  More importantly, they give me great comedic material.  How boring would life be with those dang "normal" kids.  Man, we'd HAVE to watch t.v.  as it stands now, we are self entertaining.  :)

Cycles of Grief

There are actually some days that I am just not fit to go into public.  I can't explain why those days happen but they do.  For whatever reason, there are days that it all just smacks me in the face. Sunday was one of those days.  My son wanted to go to church which is always a rare and positive thing so I planned on taking him to church.  We woke up and he was grumpy, snappy, even somewhat explosive.  The morning was a bumpy one.  To ass salt to the wound my daughter had to tell me how embarrassing I was to her and that was it for me.  All done.  I just did not want to find the strength to push through it. Oh sure, I know all the realities of teenagers, hormones, mood disorders and not to give in, take it personal etc but not that day...it just was like hitting a nerve that rippled through my core.

I don't want to lose the opportunity to go to church though, right?  So we went. I waited until church was starting so I could sneak in to the back and sit as unnoticed as possible.  I did not want to talk to anybody, have anyone see me when I felt like I had just been punched in the gut. So then I am sitting there and there is this family in front of me with a little boy.  He stands on the pew and puts his arms around his mom.  He was all of maybe 7.  She leans in towards him and smiles.  Damnit, face started leaking.  Grieving.  I miss this moment in time that I had with my kids.  That moment when I did not know of mental illness and when he was little and I thought I could "cure" the autism and his life was bursting with potential.  I miss my own innocence in parenting. My daughter was the hugger, and her arms would wrap around me.  I called her velcro baby.  Now I embarrass her.   Ugh.  Just a day of grieving I guess.

A while back I went to a 3 day seminar on neurological differences given by the U.C. Davis MIND Institute,they are fantastic! One of the classes discussed how parents of kids with neurological differences go through a grieving cycle. It's not like a death grieving.  There is no end for us.  I'm not qualifying it as better or worse just acknowledging the truth in the cycle.  When you first find out about the disorder, you grieve potential lost and then you move on, become accustomed to the new level of normal.  As is human nature, you begin to see positive signs and maybe even grow hope for a bit then BAM...nope, the disorder rears its head and you see the potential lost again, hopes fade, grief wins again.  It cycles and turns around and over again and again.  It doesn't mean there isn't progress, it just means that the grief is the acknowledgment of what is not "typical" what is "different" and what is not what you expected or hoped for for your child.


It is times like these of late that I want so very much to remember that the powers greater than myself are limitless.  I feel extremely overwhelmed and fatigued and yet I still am the Mayor of Crazytown and I have midterms coming, kids to manage, a fraction of my business left to run, medical and psychiatric appointments to schedule and keep, a house to manage and a fundraising campaign to promote.  The grief, the sadness and the fear have limits.  They hide the light, cover it like nightfall. The darkness offers only limited sight.  The darkness passes, the pain fades and the light of limitless power returns. It is a cycle. It is human nature, I guess.  I will move through it.  Some days I will have more grace then others and some days I will laugh at it.  Some days I will want to hide and let it stink.  I just gotta keep moving...keep reaching towards the source of limitless power and know that it will pull me through.  This is an honest blog but kind of dark...I promise the next one will be about how I find humor in it all. Bipolar can be funny too!

Reach Out

I think we would all like to imagine ourselves as non judgmental and accepting and open to one another's differences.  Oh how I wish this were true for the sake of my son right now.  I admit, even my own journey has been filed with judgements and thoughts and when you throw in the words "mental illness" it has certainly thrown out red flags.  We understand so little about it all.  It is so scary and hard to understand.

There are low levels of judgement and criticism, even fear, to different forms of mental illness.  Depression and anxiety are more widely accepted and tolerated although those who suffer from these illnesses endure a lot of judgement and criticism such as, "just pull yourself together...pull yourself up by your boot straps...don't let it get to you" statements.  I'm sure those are about as helpful to the self esteem of the mentally ill as candy to a diabetic.  Then you get into the more intense forms of mental illness, the scarier ones.  Yep, we are talking, bipolar, schizoeffective disorder and schizophrenia.  You want to get some weird looks from perfectly innocent strangers, say those words in public places.

I admit, I had a guy hit on me in a church group once and he told me he had schizophrenia...I ran for the hills!  In my defense, I was already dealing with being a single parent of an autistic kid and an ADD tornado girl so my figuring was, I had enough problems.  I don't know that if I didn't have these excuses if I would not have run for the hills anyway.

Here's the thing...I brought my son in to a local store here in town.  I know the woman who runs it and her son works there.  He is the same age as my son and goes to the same school.  When my son followed me in to the store I casually but enthusiastically made conversation by acknowledging that the two of them are in the same grade in the same school.  My son mumble an acknowledgement and I saw the other boy tense up.  I asked if he knew my son.  He stopped making eye contact with me and turned his head slightly away and answered "yes".  Everything got uncomfortable...tense...loud but unspoken.  This poor kid felt so awkward but he thought my son was a freak.  He did not want to be friendly to my son.  My son felt it but took it in stride, like it happens every day.  My heart broke.  I felt crushed.  I wanted to ask the kid in my protective Mamma Bear energy, "what in the hell is the matter with you?!?!",  but I knew.  I can't even say I blame him.  I might have been the same way at 15.  It's survival of the fittest in teen land.

The sad part is, that in my experience and recent education, it is just this isolation that aster-bates the symptoms of mental illness.  How can I convince my son he is not a freak or that he is not isolated and that people really do like him when this kid embodies a typical reception among his peers.  Can you imagine the darkness that would result?

How do we teach our kids? How do we teach ourselves, each other?  We are all connected, different, weird, freaks.  Some of us show it more then others. My son has an added excuse of autistic spectrum disorder which is more palatable among the community but still weird for his peers to understand.  We all have our quirks, our fears, our oddities.  We are all part of the human family, connected in our similarities and differences.  How do we reach out beyond our fears and judgements?  How can I teach the world to reach out and accept my son? How do I protect him from those who don't, won't or can't?

Mom, am I crazy?

So my son asked me the other day, "Mom, am I crazy?"  He was not joking and stood right in front of me, looking me dead in the eye wanting my reassurance.  "Crazy".  Seems like a harsh word.  It took me back.

Feeling un prepared for such a question, I tried to laugh it off with a Big Bang Theory joke, "you can tell people you ARE crazy, your mother had you tested". He did not laugh.

He said, "All of this new stuff on mental illness you are doing, I'm not mentally ill am I?" My stomach tightened.  How do I explain this to him?  What do I say that he can hear?

Part of me wanted to just laugh and shout out, are you kidding me...do you think any of this is SANE??? I was pretty sure he would not laugh with me nor would he see my perspective on this.

I put my hand on his shoulder, which violates his no touching rule but in so doing showed him how important my statement would be.  I needed to touch him for me, in order to feel my connection to him and to show him that I would not let him be alone in this new reality I was about to dish out for him. I looked him in the eye and said, "Yes, son, you have mental illness. You have a very serious form of mental illness."

I explained that there are many forms of mental illness such as depression or panic attacks and that some are acute and can be easily managed even cured but that his form of mental illness is not easily managed nor cured.  I kept my hand on his shoulder and I said to him that we have learned to understand his autism and we can learn to understand his mental illness too.  I reassured him that he is an amazing young man and is not defined by his autism anymore then he will be defined by his mental illness but he will always need to be aware of both and manage his challenges with good choices, a doctors help and support around him.

He said, "Oh. I didn't know."  He searched my face deeper and asked, " Does this mean I'm insane?  Am I crazy?"

I don't know how to deal with those words because they don't describe a person to me but they describe actions. I told him that there are times when he is manic or suicidal that I would call his behavior crazy. I also told him that his 13 year old sister can be crazy sometimes and I can get really crazy in my head so I don't know if the word can stick to him any stronger then it can stick to anyone else.

I dropped my arm, releasing him and told him that I was so sorry that he seems to have come into this world with a body more sensitive then most, with more intense challenges then so many.  He agreed.  I told him that this is just the way he was made and it is up to him how he deals with it but that he is a brilliant young man with great potential and when he learns to manage his autism and mental illness himself he will be unstoppable.

My stomach untwisted a little when I saw him breathe out a little and the tension in his face and eyes relaxed a little.  I don't want to lie to him, ever.  He is so intelligent and we have always been so honest and respectful of one another.

I never thought parenting would involve moments such as this or should I say I always hoped that parenting would never involve moments such as this, but here it was, a defining moment for my son.  I, as his mother, the one person he trusts more then anyone else had to walk him gently into this new reality.  I was not allowed to feel for myself at that moment, I was not allowed to escape or defer to someone else.  I had to help him understand his obstacles and empower him to make a choice how to handle the truth.  As always, he impressed me with his strength and honesty and his ability to question directly and to the heart.

I still want him to learn to laugh at my Big Bang joke reference though.

Another Step Toward Hope...

So today I signed the contract for the autistic service dog with Pawsitive Service Dog Solutions.  Being a law student, I read it through carefully and had to call and ask questions. I am totally tainted on how to read contracts now and take nothing for granted.  We agreed to a minor change in the contract and I signed, dated, folded it up and sent it in the mail.  A contract acceptance is valid upon dispatch.  There it goes. Locked in.  Oh my....now I have to keep breathing.

Following the contract was an email on how to raise the money.  Oh boy...okay.  I used to be in fundraising, income development large and small.  Somehow it was easier to raise money for cancer research, a church and a school for special needs kids then for my kids service dog but it is do-able.  So much information to cover, so much to do.  Phone calls, letters, researching options.

WHAT?!?!  Am I crazy?  I am a full time Mom of two kids with special needs, I work and I am going to law school.  I am the mental health shuttle bus and the Mom taxi to teen land.  Now I am supposed to find time to write letters, plan and coordinate events, make calls, follow ups and manage a fundraising campaign.  This is totally insane.  I was having trouble breathing before all of this and just thinking of adding more makes oxygen very thin.

I gotta say though, it is kind of a nice stress.  It feels like I can do SOMETHING to help my son.  It gives us all an action towards hope.  It puts us out to our community in a vulnerable way but those who answer will answer with kindness and love. We have felt so isolated and alone in the autism and the bipolar issues that having folks respond to this need in any way, big or small, is HUGE to us.  Five dollars is a huge show of support because it means someone cares and wants my kid to not feel like the freak at least just a little, and a whole lot of littles make a whole lot of caring and a life changing, possibly even life saving difference.  It's risky, scary and a lot of work but I think it might be possible. I pray it is possible.  I hope. I like to have a way to channel my hope, channel my positive energy and give it a job.  I forgot in all of the darkness of late how much I like to hope.

A Ray of Hope!

Exciting News!!!!
Yesterday we got a phone call from our top organization on our wish list that they have accepted our application for my son to receive an autism service dog. WOOT!!! *happy dancing* So where did this begin?  It was suggested by his crisis team that a service dog would be of great assistance to Lexi because how much he connects with  animals.  We already have two family dogs and three cats.  In fact our cocker spaniel we found roaming the streets of a local town abandoned by his owners ran right up to my son and sat down by his side and basically adopted us..  One of our cats who has now passed from cancer chose my son at the animal rescue. The people who ran the rescue were fascinated and thought she was ferrel until she walked up and curled up in my son's lap.  Our cocker spaniel is 9 years old now and although he still thinks he is a puppy, he is not and our other dog is a silky terrier/guinea pig looking type gal I took in who has some serious health issues and will have a shorter life then a typical dog but I am determined to make it a happy and loved life.

So what benefit to getting a SERVICE dog when we already have pets?  Well, research shows that these animals that are raised and trained in specific ways change the lives of those they serve.  I think it has been on different news shows how certain dogs can be trained to smell cancer or low blood sugar or even seizures before they happen. Those dogs make me nervous, actually-I'm always afraid they will start sniffing me and indicate that they found something.  An autism service dog is somewhat similar.  These dogs are raised and trained to be way smarter then people at times, calm and steady.  They help distract their partner when they are anxious, depressed or doing repetitive motions such as "stemming" which is a typical autism behavior of rocking, pacing, flapping, etc that helps the person calm themselves.  They also help create a social bridge for their handlers. My son has huge social anxiety and becomes extremely overwhelmed in crowds and crowded public places. A dog can be trained to stand in a certain place to help their handler feel secure, lean on them to calm them and give a go between for the handler so people come up and talk to the dog and by proxy the autistic person becomes social.

My son also has terrible trouble sleeping at night.  This is typical for folks on the autistic spectrum. Throw in the Anxiety Disorder and the Bipolar and you have a recipe for disaster at night.  Service Dogs have been proven to help their handlers feel safer, calmer and less alone at night.  Some are even taught to lay on top of their handler and give a deep pressure sensation to calm them and help them fall asleep. It is the late night hours that I am most worried about and the hope that a dog would be able to assist my son and watch over him in some ways to help him feel safer, will be my biggest relief.  We are all exhausted from trying to navigate the wee hours of the morning anxiety and depression.  Would it be wrong to ask for a bull mastiff to just lay on top of him until he passes out every night?  Some dogs can be taught to help stabilize a runner, go after a kiddo who takes off and so on. It has also been shown that kiddos bolt less when they have a service dog.  The benefits to a specially trained service dog are countless and go way beyond these specific details.  If a dog can just help my son feel less alone in the world and hep create a bridge for him to step out and learn new social skills, become more independent and secure in himself then it would be an answer to prayer.

The suggestion for my son came out of the recent difficult year that we have had an his continuing anxieties, social awkwardness and depression.  It also came out of the fact that my son is 15 and wants to one day live on his own.  I believe that a service dog can help him transition into the world a bit easier. He can learn to take the dog with him to jobs and to school. Although it will be probably longer then average before my son might launch into the world if at all, a dog would allow him the extra strength to step forward.

So now we move to the next steps. The contract will be signed and a down payment given and then a plan to raise the money for the dog begins.  Yes, these dogs are costly to raise and train as you can well imagine.  Many of these organizations say that it costs approximately 30,000 to raise these canines.  Seriously, I almost had a coronary when I heard that number. Although there are many volunteers who give so graciously of their time to work with the animals, the cost is still high.  Being a service dog is a huge job and to be certified for full public access is no easy task.  HOURS upon HOURS upon HOURS are given.  This organization requires the families only to raise $12,500 and the rest is covered by donations to the organization directly.  The waiting list for our dog is 12-18 months so in that time we need to raise the $12,500.  Okay, I've done fundraising before...that is still a lot of bake sales!

This organization is our top pick because it is local to us and the training requires the families to go and stay for most places.  Here we would have no travel expenses. We can do follow up and visits with them after placement and if we have questions they are very accessible.  They do not mind cross over diagnosis such as my son has not only autism but bipolar as well and Tourettes.  Some organizations do not like folks with diagnosis OTEHR then autism.  I also like that they do not require you to raise ALL of the money and THEN the timeline begins and most awesomely, they assist you in raising the funds.  They have packages and someone to help guide and direct your fundraising and will support your by bringing dogs to events or help with articles in the news, etc.  There are some organizations that would offer a service dog but it can not be brought to school or it can not be kept with the family when it retires and so on.  I am so grateful that this place meets all of our needs and that we can go visit and meet the dog as it is being trained and my son can find hope in the process while we wait for placement.  My son needs hope and I think this dog will be a light for him to reach towards and once placed to help brighten his own light and path into the world.  I am so grateful.  The answer to our prayer has just begun.