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Sunday, August 4, 2013

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