Unexpected Strength during rough days

 

 

Unexpected strength during rough days

 

 

I apologize for my lack of posts.  The wrath of bad luck has struck this house in July 2013 like you wouldn't believe.  The first two weeks we had the flu and my daughter (Bipolar Girl) had some light coughing.  We were basically bed-bound, but my son (Asperger Boy) didn't get the flu and brought us drinks, food, etc.  Listen carefully to the details in this post.  This isn't really about how terrible July was (ok, it is) - but more importantly it's about how my children pulled through and made a bad situation work knowing I was horribly sick and my estranged husband was in Washington, DC and was of absolutely no help.

 

The middle of July, we saw the CNP at our Ped's practice b/c our regular Pediatrician was booked solid.  She asked me about Bipolar Girl's asthma because I was reporting so much coughing that I couldn't control.  I stated Bipolar Girl didn't have an asthma dx, the meds she was seeing on her chart were from having croup during the winter and I had asked the staff numerous times to take them off.  She arranged a breathing test two hours later (it gave me time to take my children to lunch, I had Asperger Boy with me and regular meals are highly important).  We went back and I didn't need the test results.  I watched her blow into the tube and saw the graph results on the screen.  She could barely breathe to be quite frank.  We started on QVar 2x's a day and albuterol 3x's a day.  If you've ever given asthma treatments, you know they take all day and you basically can't get anything done.  At least this virgin Asthma momma couldn't.  The treatments did nothing.  While I was there, I pointed out her red throat and asked for prednisone.   The CNP looked at her throat and told there was NO  need for prednisone.  Uh-huh.  Lady, I've been doing this a lot longer than you.  My daughter was coughing day and night.  Her rapid strep had come back negative for weeks, but I wasn't convinced she didn't need antibiotics as well.

 

My daughter taking an albuterol treatment at home July 2013

, despite many daily treatments and care her asthma attacks continued and frightened me.

 

 

In the meantime, Bipolar Girl had planted beans from the kitchen in plastic cups and put them in the window.  They sprouted and she was so proud.  Until the dogs knocked them down when we were gone on an errand.  I am SO proud of Asperger Boy. He looked at the mess, looked at me and told me he'd take care of it.  He did an awesome job of cleaning up all the soil and even replanted the seedling in a new cup.  What happened to my children and who are these kids?

 



I'm going to warn you - this is a post with ALOT of pictures.  My children both suffered and accomplished a great deal this month.  I feel images really convey the story and add to the understanding.  I'd love your feedback on this - so please feel free to comment or email me!

 

So, back to Asperger Boy - he saw his sister's bean sprouts all over the floor before she did.  He told me to leave it alone and this is how he handled it:

 

First, he cleaned it up with a towel.

Then he did his best to save the plant and dirt.

Finally, he went to the front porch and added new potting soil.  So far the plant has lived!  So proud of my boy!

 

During all this time, Asperger Boy developed migraines with auras he can't describe or understand.  We were assigned a horrible Neurologist at Nationwide Children's Hospital, even though I specifically told the referring Neuro Opthamologist that I wanted him to see the same Neurologist my Bipolar Girl sees for her migraines.  I was truly hoping that my son would be spared this genetic curse.  Migraines run heavily in both my family and my estranged husband's family.  He had made it to age 10 and I was truly praying that we had dodged the curse.  He is confused and becomes almost nonverbal.  It's very hard for him to describe what's happening during the migraine and the Neurologist was absolutely worthless.  She stated that if he couldn't tell her what was happening she couldn't diagnose him.  I'm sorry but I truly believe that #NationwideChildrensHospital needs some physician training on diagnosing and empathy for autistic children.  I personally volunteer to teach the class.  You can reach me at snp.ididnotsignupforthis(at)gmail.com. Oh and by the way, I fired her.  I think the staff was in shock - but I cancelled our next appointment and made it clear we were done with that neurologist.  I left a message for my daughter's neurologist to call me regarding my son.  I try to get the same doctor for both children because I believe seeing family connections and genetic similarities is very important to proper care and diagnosis.

 

So back to Bipolar Girl, another week passed and she couldn't walk from her bedroom to the kitchen without multiple asthma attacks.  I took her back to the Ped office and this time got our regular Pediatrician.  He slapped my hands and reprimanded me for allowing her to get in this condition.  He immediately put her on the highest dose of Prednisone she's ever had, put her on the nebulizer (which I agreed with she wasn't using the inhaler well) and kept he Qvar treatments.  Now to travel, I'm looking for a nebulizer that will use our car outlet.  Special Needs Moms truly do more research in so many areas we deserve college credit!

 

In the meantime, Asperger Boy begged for some sensory help.  I was on a limited budget you wouldn't believe - but this was what I managed.  He was in heaven!

 

He loves water!  It's the best sensory relief for him!

 

Love that smile!

 

One of my favorite pictures!

Our month included blood draws.  As you can see Asperger Girl was not happy.

This is an example of Asperger Boy's PANDAS Syndrome. Fact Sheet on PANDAS Syndrome

He has an obsession with cleaning, especially vacuum cleaners.

 

Asperger Boy is a much better camper for blood draws.

I love to see them relaxed and having fun.  It's been such a rough month.

 

 

We took Butter (golden lab rescued from a shelter, service-dog-in-training #1) to the library today for an OT evaluation for Bipolar Girl.  She was initially uncooperative, but being the player she is she came up with her own deal.  She agreed to cooperate for a frozen lemonade from Wendy's afterwards.  I caved because I just went to the clinic and have a horrible sinus infection, feel miserable and it seemed liked a small reward for good behavior.  I had to stay in the room to handle Butter - who was absolutely wonderful.  She laid down beside Bipolar Girl's chair without getting in the way and offered comfort when she got stressed.  I had to take Asperger Boy, as I had no childcare, and when he was bored with the iPad - he rolled under the table and Butter joined him keeping him loved and happy (and quiet!).  That dog is a blessing from heaven!

 

Bipolar Girl, Butter (service-dog-in-training) and Asperger Boy

 

There are other changes going on in our life that I can't write about quite yet.  But July was a month of bad luck and a lot of sickness.  My children pulled through in amazing ways.  And although we have a lot of work to do, I was proud of the way they took initiative and surprised me with their strengths and can-do attitude.  This is the very life skills I have been preaching for years and thought they fell in deaf ears.  I am amazed and blessed to find out my children can persevere in a stressful situation.

 

This blog post was an attempt to document a rough yet often normal month in a special needs family.  I also felt that additional pictures would help the reader see the story in a more personal way.  Most importantly, my children are pulling through in amazing ways.  I cannot express my pride.

 

I hope you enjoy this post and comment, email and share this post.  I wish you a wonderful month with your special needs children!

 

Jodi Hobbs is a single mother and home educator to two special needs/autistic children who teach her everyday that the legendary box never even existed, but the possibilities within the minds of our children can transform the world.  She is a fierce believer in mental health access and treatment being basic human rights. She blogs at www.throughthehardtimesandthegood.blogspot.com and is a regular contributor to Dandelionmoms.com.  Her work may be found bimonthly in The Gallipolis Tribune (www.mydailytribune.com).  Her Facebook page can be found at https://www.facebook.com/pages/I-did-NOT-sign-up-for-this-Special-Needs-Parenting/226416517475272?ref=hl and you may follow her on Twitter @JHobbsSaunders.  Jodi welcomes reader opinions and comments at snp.ididnotsignupforthis@gmail.com

 



The anxiety of genetics that my son can't verbalize

What happens when your verbal Asperger child is no longer verbal?

Today my son, affectionately dubbed "Asperger Boy" (don't hate mail me people.  He knows I use this term online and he's fine with it.  If *HE'S* fine with it - then you can be too.  Find a way.) had his fourth "vision incident" in two weeks.  By "vision incident" I mean he indicated he couldn't see the same and while in past incidents he has used the actual term 'cloudy vision', today he couldn't even verbalize that.  It started with him going from having an excellent morning and upbeat spirits to being angry and hostile within minutes of each other.  Since, while he is bipolar, he's never been what I would consider rapidly-cycling bipolar - this didn't make a lot of sense to me until I started to think about what other factors could be upsetting him.  I ruled out hunger.  I'm never going to know about pain, he told me repeatedly he just didn't know if anything hurt.

 

 

I took him to the Pediatrician for the first vision incident and because they were basically clueless, I took him straight to the Children's Hospital ER following that.  I hate our Children's Hospital and with good reason.  My autistic son is describing cloudy vision and during this vision incident only he stated there was pain around his eye.  They didn't have access to an ultrasound machine to check his optic nerve, they didn't check the pressure in his eye, nothing.  As my cynical mother used to say "Hell of a place to start a hospital.  Sounds like people could use some decent medical care here."

 

The other three times my son was very frustrated and upset, but repeatedly answered the same way to my questions about pain.  He just didn't know.  We have the same issue with his severe ear infections.  He can't feel the pain and often his eardrum is about to rupture by the time I get him to the Pediatrician.

 

There's been a lot of emotion in our household since these vision incidents began.  But if you didn't know our family history or how to read my son's inability to voice pain and some emotions, you'd miss so much.  Asperger Boy has been undecided on the decision of getting a service dog for himself.  In part, in my opinion, due to his nervous nature and his fear he will not know how to understand the dog and it's nonverbal body language.  That completely changed once his vision began to have problems.  He's campaigned adamantly for not only a service dog, but the black lab we rescued from a shelter and brought home with the intent of seeing who she bonded with best before training to certify her as a service dog.  I believe he feels comfortable with her and needs that familiarity, especially in such a frightening time for him.

 

My almost nine year old daughter was diagnosed about 1.5 years ago with Leber's Hereditary Optic Neuropathy (LHON).  It's a degenerative disease of the optic nerve that is both genetic and mitochondrial in nature.  It affects more males than females and usually begins with vision loss in one eye, affecting the other eye on average in 1-4 months later.  Most patients are blind within a year.  Our entire immediate family, including my estranged husband, carry the gene.

 

It was difficult to talk to my son today.  I wanted him to know that he could talk to me, but didn't want to upset him by continually bringing up upsetting topics.  I kept it brief and assured him I was here for him.  He was able to tell me that the appointment tomorrow with the Neuro Opthamologist  who diagnosed my daughter with LHON and tested the entire family for the gene had him nervous.  He couldn't elaborate on exactly why he was nervous, but that was enough.

 

Sometimes special needs/autistic parents are the only individuals in a child's life who know them well enough to translate nonverbal communication or the inability to speak at all.  My son is scared.  He's not alone.  I'm terrified.  I'm terrified my son will at best end up like his sister who lost enough vision to be considered visually impaired.  I'm terrified at worst he'll be legally blind from a gene I gave him.

 

 

The professionals in the autism world put our children in two clear-cut categories:  verbal or nonverbal.  I would disagree.  My son can speak volumes about engineering, robotics and building.  He can go on for hours about building materials affecting the stability of a structure and how concrete must be correctly mixed and allow to cure.  But right now he's paralyzed by the fear he will spend the rest of his life unable to see.  And he doesn't have any words for this.  The vision episodes he's experiencing are so complex and overwhelming that he can't describe them to anyone, not even his own mother.

 

Today he was trying to read a novel and I could tell he was struggling.  I asked him again if he could tell me anything about what he could or couldn't see.  He pointed to a white paper plate on the table and said half of his vision was like that.  Then he pointed to the top of the brown kitchen nook table and said the other half was normal and in color like that.  I gazed at that paper plate and my heart broke over and over.

 

Does this mean my son automatically is doomed to LHON and blindness?  No.  It's possible his symptoms may be some type of optic or retinal migraine.  We had an emergency Neurology appointment (again, with the local Children's Hospital that I have very little use for) and the neurologist was unable to tell us much of anything.  She said with his inability to describe the episodes she couldn't diagnosis him at all.  I can't tell you how disgusted I am by a medical world unable to help those who may be brilliant in their own way, but perhaps cannot give the Gettysburg Address.

 

Today we began bonding the lab, Tinkerbelle, with my son even more.  He began short and positive obedience lessons with her and rewarded her with dog treats often.  I encouraged him to have her sleep in his room to further cement the bond as much as possible.  Tomorrow?  Tomorrow I'm going to lie.  I'm going to tell my son that everything will be alright.  I'm going to hug him (as long as he's open to physical contact) and tell him the Dr. probably won't find anything wrong at all.  Because my son deserves a few more days of peace of mind.  There's a good chance the Dr. won't find evidence of LHON.  But a child simply doesn't lose vision in one eye on multiple occasions without any reason at all.  Whatever your beliefs, please pray or keep my son in your thoughts tomorrow.  A child normally asleep right at 8pm, it's 10:20PM and he's wide awake with fear. 

 

I will not allow my children to become haunted their entire lives by the fear of what their genetics may hold next.  Please join me in contacting your state and national representatives to demand that our precious tax dollars stop going to foreign countries who plot against us or be spent on a drug war that has raged for decades with no end in sight.

 

Demand that our hard earned tax dollars be spent on allowing our children to live healthy, fulfilling lives free of fear and anxiety.  My son may not be able to express his fear - but I can look into his beautiful blue eyes and see that he fears the future.  No child should live in that nightmare.  I intend on making it a mission to speak to lawmakers and anyone else who will listen that our nation puts our children and their health first.  Help me remind this nation that our children are our future.

Please support research and a cure for LHON

 

Resources:

http://ghr.nlm.nih.gov/condition/leber-hereditary-optic-neuropathy

 

http://www.lhon.org/lhon/LHON.html

 

http://www.ifond.org/lhon.php3

 

http://autism-help.org/communication-autism-introduction.htm

 

http://www.aane.org/asperger_resources/articles/miscellaneous/asperger_nonverbal_learning.html

 

What did my daughter use to treat her LHON?

As prescribed by her Neuro Opthamologist and monitored by blood tests, she was put on high levels of several vitamins and Idebenone (synthetic CO Q10) .

 

What did you mean by "mitochondrial disease" and are there others?

http://www.mitoaction.org/mito-faq

 

http://mitochondrialdiseases.org/mitochondrial-disease/

 

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934627/k.3711/What_is_Mitochondrial_Disease.htm

 

Types of migraines:

http://www.webmd.com/migraines-headaches/guide/ocular-migraine-basics

 

http://www.mayoclinic.com/health/ocular-migraine/AN01681

 

http://migraine.com/migraine-types/retinal-migraine/

 

http://www.migraines.org/treatment/TreatRetMx.htm

 

 

 

 

 

 

 

 

 

 



A beautiful bipolar pixie who breaks my heart, every single day

 

 

I had to begin somewhere....

and she said the most amazing words.

 

 "Mom, can you look at the braille work I've done and tell me what you use to get it to raise?  I heard the most amazing phrase on Numb3rs! 'Zombie with a gun.  Waiting for words that will never come.'"  This is what my 8yr old Bipolar/LHON/ADD/Anxiety/Possible Aspergers but no one can ever agree/Pediatric Migraines with aura daughter (Bipolar Girl) greets me with as she bounces into my room. She hands me index cards that she has carefully written letters on and above them a very painstakingly copied series of braille dots from a list she printed off the internet.  An interesting set of behaviors from one 8 year old child, I know. I explained to her that to make it actual braille we would need an expensive braille labeler.  Last week I walked past her doing a word find with the word HIPPOPOTAMUS.  She had written down 'mus', as a word.  I tried correcting her and she informed me it was Latin for mouse.  I looked it up.  She's right.  As to her fascination with "Numb3rs", she gets very OCD about t.v. and books.  She insists on science-fiction or crime-dramas that feature extremely smart male figures, like Charlie the math prodigy in "Numb3rs" or Dr. Rush in "Stargate Universe".  Then she talks about them incessantly and drives all of us in the house stark-raving mad (most of us are already there, but still!). 

 

Bipolar Girl has Leber's Hereditary Optic Neuropathy (LHON).  She's lost enough of her sight to be classified visually impaired.   We're currently training one service-dog-in-training that we rescued from the local shelter, Tinkerbelle, a black lab mix sweeter than molasses.  The children and myself all qualify for a service animal.  So it's uncertain who this point who will benefit most from Tinkerbelle and who will benefit from near future dog/puppy choices.  We wish to train them very close together.  I also believe the dog has lifted the depression and doom atmosphere began by the beginning of The Divorce.

I'm also not sure whether the animal will better serve her as a traditional service animal (depending on how her experimental vision treatment, Idebenone, continues to work long-term) and the fact her bipolarism is extremely strong.  When she's in the moment - she puts that little girl with the spinning head in the Exorcist to shame.  Evil.  Stress is her main button.  State standardized testing this year made her suicidal.  I'll tackle that issue in another post.

I've said all these words, but realize I haven't really described my daughter at all.  She's extremely intelligent according to standardized testing and has huge blue eyes framed by black lashes as big as paint brushes.  She started struggling somewhere between ages five and six with depression and rapid mood swings.  She started throwing herself on the floor, banging her head and pulling out her hair to cope with the stress while she begged me for help.  She loves poetry.  At six, she made me buy her a $35 hard-backed volumn that I knew I'd regret.  I never did, she reads it frequently to this day.  I love her more than life itself.  It would be an honor to take a bullet for her.

I fear that my beautiful, passionate daughter who is now beginning to write her own poetry is being ignored by the world.  Bipolarism just doesn't get the press other disorders do, but I assure you - it's terribly disabling and terrifying.  You are trapped in a brain full of negativity and depression, unable to understand or figure out how to help yourself.  Many adult bipolar patients are misdiagnosed for years, sometimes decades.  Even childhood patients who fit the profile usually are diagnosed with an "Unspecified Mood Disorder", because many experts in the field feel hesitant to rush to a bipolar diagnosis.  It terrifies me to watch her rapidly-cycling between hysterical giggles and throwing household items across the room screaming like a mythical creature.  I'll spend the rest of my life fighting for my daughter's quality of care and a cure for this insidious disease.  I won't allow her to fall into it's black pit and never return.  The suicide rate for bipolarism is 20%.  My daughter won't be the one in five who succumb.

Please support my calls that more attention, research and money be put towards Bipolar research, both adult and pediatric.  Contact your local and national representatives in legislature to let them know this terrible disease has destroyed the life of too many beautiful, bright-eyed children for too long. Call and write letters.  Start internet petitions.  Let's raise a little hell, people!

Resources:
http://www.internationalbipolarfoundation.org/

http://www.dbsalliance.org/site/PageServer?pagename=home

http://www.nlm.nih.gov/medlineplus/bipolardisorder.html

http://www.bipolar-foundation.org/

http://pendulum.org/support/support_organizations.html

Finally, a research study!
http://patientinfo.nimh.nih.gov/BipolarDisorderPediatric.aspx