June has been a challenge.

We have been bombarded with medical appointments and co pays this month.  Therapy is always twice a week.  My husband has had numerous appointments with specialist and Friday an outpatient muscle biopsy. We also squeezed in two days of westcock-johnson testing for home school.  Needless to say we are all exhausted and tired of appointments. 
The good news is my son did really well after not making any  effort with his school work.  He scored way above levels on English, 8th -10th on parts of the test. He was in 6th grade.  We just have to work with writing and sentences.  He also went up a level in Math which was only made possible by a patient tester, prayer and the amazing calculator! He has always been behind in math, yet he was getting A's in public school with special accommodations. He just doesn't get Math!!!
My husband is healing from the biopsy.  He still has numerous test before we find out any results.  He is resting and in good spirits. We  are having a laid back weekend before starting another week of appointments... I am thankful for health insurance just wish it covered more.
Looking for a friend or mentor to do things with my son this summer with good character.  We had to do an increase in his medication a few days before testing.  He was very manic.  Obviously, he was stressed about the testing.
We are also expecting another grandchild.  My oldest stepson told us this week that they are 16 weeks pregnant.  Praying for them and that he will get a great job.
A lot on our plate this month but God never gives us more than we can handle.   

Let's Step Back

Stepping back on medication for us is being off ADHD medication.  Today we are starting  Detox supplements for our son.  He has never responded well to any of many medications. All of which have side effects such as weight gain, loss of appetite, eating non stop, craving sweets, constipation, ect...
Our hope that the Amino-D-Tox and Milk Thistle by Design for Life, will cleanse his system which will enable him to respond to medications as needed to make his quality of life better..  This was ordered by his mental health physician for 30 days.
So far he is louder and more hyped, which is normal for him w/o a ADHD med.  He is able to sleep with the clonodine which is helping all of our moods.
This is the next step of our journey, one that was missed because of his lack of cooperation.  We found Dr. Charles Parker at corepsychblog who has taken a real interest in him.  He is working on his total health his bowel issues and brain issues.
We were told by our developmental pediatrician that Aspergers was the best diagnosis at age 5 but a psychiatrist would come up with 12 different labels. Since that time he was right, he has been given many labels.  He had early intervention with many hours of individual, group, speech, OT and an IEP through 3rd grade.  At that time we decided that an individual education plan should be supplemented individually. That is why we home school.  He can learn where he is on different levels.  We are getting ready for the testing required by the state.  Has he progressed, yes but will a test show this?

Sleep,,,, Heavenly Peace...

If you do not have a sleep issue in your house then you are LUCKY and will probably find this boring.  First of all my husband has 2 sleep disorders.  If he doesn't get a good nights sleep, with a sleep aid and his breathing machine then coping becomes next to impossible.
My child  has never sleep through the night until we added a sleep aid at age 5.  He seems to be on the night shift if not medicated.  About 6 weeks ago we tried a different ADHD medication.  We had to stop the clonidine.  We'll what can I say but we have all been rather cranky...Clonidine was added back, Intuniv stopped.  Miracle, he fell asleep with his head on the clean linens in the laundry basket thinking he was gonna stay up again.  I got him to bed and he slept 12 hours, then 8 the next night.  We are w/o ADHD meds. but WE HAD SLEEP!!!!  Without proper sleep he is more prone to rage/tantrums and true irritability.
I too rely on a sleep aid, I have a compromised immune system, I Must Sleep... Coping is a whole lot easier with a good night of SLEEP...Every body benefits.

Medication Challenges

Today I am ready to throw out the Neurotin, not working for fibromyalgia pain...  Health insurance would not pay for cymbalta so I must try this.  Give me back my anti depressant at least I could cope better with the pain and my child!!!
My child is not explosive today nor is he cursing non stop.  Which is something that therapy has not helped.  It's not like he lives in a home where we speak it.  He has his days and nights reversed since his last medication change...He has an appointment Monday so I am working on my list of what we need to change.  He does not respond well to medications.  We did IGG testing which shows he has food sensitivities to almost everything.  We have tried a Gluten,wheat, dairy, egg, cashew, yogurt, yeast, free diet.  He is very uncooperative. If it says gluten free, he won't try it.  He is a picky eater.  He only eats it if it looks right. Yes he is spoiled and over protected, but he also has sensory integration issues.  When I grew up I ate what was on my plate, I can't imagine telling my mom that I was not going to eat her crappy food.  This is part of his mood disorder, I am not to take it personal but it is!!!,
What does that mean, how do you not take it personal when you spend your life loving your child, taking him to doctors, therapist, OT, speech, group,home schooling, because he can't handle school, playing with him because he can't keep a friend and you are the target of his anger and aggression.
Yes, bring back the anti depressant, not coping as well as I'd hoped.  Puberty is kicking in and I can't see things improving anytime soon. Ii will never give up on my sweet little boy who can be the sweetest child in the world until his switch goes off...Prayers and hugs for my sweet child xoxo  Mom




 

Lupus Awareness Month

May is Lupus Awareness Month.  I was diagnosed in 1990. Today I set up a face book page for our local chapter.  Join us at :Lupus EVA chapter
www.lupus.org
Let's Band Together for Lupus  Go to the LFA National site for all current information, trial drug studies and ways you can help
I will spend another day telling My Lupus Story.  Today I have an explosive child to deal with. Which is another blog we won't get into today.

 

Challenge to Blog

My first challenge with this project is learning to blog.  I have never had a computer class so be patient with me.  I'm learning. I'm not a gadget person. I don't play games so don't waste your time sending me all those request on face book.  I only use a cell phone to call for emergencies and never read the manual so don't leave me a message, I won't check it or please don't text if you expect a response. Technology is not my thing.  On the other hand my husband is a systems annalist retired, whatever that is and my child taught his teacher and the other 3 year olds how to work the computer in pre school..  I ask them for help but don't usually understand how to do it the next time.  I think we work from different sides of the brain... anyway, I don't really know where this blog will go but tune in from time to time as I share from my heart what God has allowed us to experience and how life can be with a special needs child.

Our Love Story in a Nutshell

     Once upon a time in a little Church, across the room they met.  They were  at a support group but they became a support system.  After a traumatic event, he rescued her.  He was there to meet her every need as she healed . They dated and were married one year later. God brought them together.