Saturday, April 30, 2011

autism resource.

Hello. I am one of those nerds who listens to talk radio all the time. (It's just about the only adult conversation I ever get) anyway, I was listening to KSL in the car the other night as they were talking about autism awareness month. They talked about a group called "Big Maks" which stands for "Mothers-with-Autistic-Kids" They've got a blog. It looks really cute and fun. I tried to remember it so I could share it with those of you here who might enjoy it. I'll also link the blog in the sidebar.

Saturday, April 23, 2011

Hey everybody,
I got an e-mail from a sweet little entrepreneur. Her name is Haileigh. She is only 11 years old and has severe hearing loss. For any of you who have hearing impaired kids - she has created her own business of making and selling charms and tube twists to adorn hearing aids. They are really beautiful. She asked me if I could let you all know about it. Check out her website here. And Good Luck to you Haileigh! We are impressed with your ambition!

Tiptoe thru the tulips...togther! (open invitation)

I got an e-mail from Tara at "Kidz" about this special event. It looks awesome. She is trying to get a special group rate for all of us 'in Holland' to go to this together. click on the picture to check it out! (If you are interested in going as a group with other special needs families, RSVP to Tara!) and feel free to pass on the invitation to anyone else you know!

Wednesday, April 13, 2011

Ogden Area Autism Meeting TONIGHT!

Hey Ladies! I know it has been a while since I have checked in here---as with everyone else, life is CRAZY busy right now. I did want to put a quick post in to let everyone know about the first FAAST (Families of Autism and Aspergers Standing Together) Meeting in the Ogden area happening TONIGHT at 5:00pm at West Haven Elementary School. This is a new group being formed to help families affected by autism come together and find support. This couple is awesome--they are making things happen, and I know good things will come from this. Check out the info at or follow them on their facebook page. I hope to see some of you there tonight!

Thursday, April 7, 2011

We Are Alone in this Together

It has been quite a while since my last post, but I have been reading all of your posts. Those who have posted this year (2011) have really hit home for me because I feel as though I can relate in one way or another.

First off, in January, I had a baby- my fourth boy, and fifth child. Two weeks after that, we moved our family from Idaho back to Utah. I feel like I can totally relate to the chaos of having not only a child with special needs but a mother to more than one child. Add on top of that the responsbilities as wife AND full-time employee, well, there is never any sort of down time. For me, because organization is NOT my forte, I find myself scrambling from one deadline or emergency to the next. In fact, you would not believe the mountain of clean laundry that has overtaken the baby's room just because I haven't had time (or made time) to deal with it.

Secondly, on the side bar of this blog, I'm listed as having a daughter with DiGeorge syndrome. Just to give you a brief synopsis of what has been happening with my daughter, Kanani, we also had her in a Utah charter school last year. Her IEP was also 'dissolved' to where she was receiving no documented services from the school. What was really devastating (looking back at it now) was that the Charter school failed to re-establish eligibility which was required a year ago. So when we went back to school in August, we had to start FROM SCRATCH on testing and determining whether or not she was eligible for an IEP and what recommended services were.

Originally, her IEP was due to be renewed on 9-18-10, but because of the testing that had to get done, we did not get the required eligibility established and signed off on until the end of January 2011. So, we too have fallen through the cracks and are now in dire need of a tutor to get caught up.

Thirdly, we have gone through a battery of testing with a neuropsychologist and last week, received additional diagnoses of ADHD, Asperger's syndrome, and nonverbal learning disability. We were strongly advised to medicate her and also to pursue aggressive social therapy, speech therapy, and occupational therapy as all are deemed to be medically necessary.

As a result of all these new things, we trialed one med for a day and had horrible response to the medication. This weekend we will trial a second medicine... I've been looking for outpatient rehab and discovered that no one south of Salt Lake will bill my insurance... and that social therapy is not available or offered in Utah.

I'm terribly overwhelmed by the gap that lies betweeen the amount of help and services she needs and the services that are available to her in Utah and at her school. What makes matters worse (for me) is that as a parent I feel like a fraud, a faker, because in reality, I've no idea how we survive and most of the time in making decisions for her care, I give it my best guess.

The reason why I share my scattered thoughts with you is not only to vent the difficulties of my unique circumstances, but to also acknowledge that each of us have our own unique combination of trials that we are dealing with. And while none of us have identical experiences, we can (I DO!!!) take comfort in knowing that while we are alone in our own set of challenges, we are all in Holland together and can relate in some respects.

So. Thank you all for being so willing and generous to share your lives with me. Its nice to know that even though my life sucks on some days, there are other mothers out there that have equally bad daysm, too. Just like me. Love you all!!

Tuesday, April 5, 2011


Im a little upset as I tried to hop that last plane to Italy, but due to some malfunctions on the plane they asked me to exit and return to my life in Holland. The flight attendents had no word on when I would be able to catch the next flight out, but she said that I should run for shelter as a storm was rolling in..........

I dont think I have prayed this much in a long while. Im feeling so beaten down by this jouney and I honestly have no one who can relate. Im trying to keep it together but ladies it's so hard. I hate being "strong" and having a smile on my face when inside Im a mess. I have not a clue as to help my child, but I need to get one as he is spiraling out of controll.

This morning by 8:00am I was in the ER because he was so upset he started head banging, headbanging so hard that he needed to get his head glued because he had mannaged a gash smack in the middle of his forhead. We were out of the ER by 9 only to return again hours later as he had another fit and started bleeding out where the doctor had just fixed.

This has been my life for the past 3 weeks. Okay, well no ER but the fits! Holy cow! It is creating chaos in my home and in my brain. I can't imagine what my lil guy is going through. He has become physicaly abusive to all around him and even worse to himself.

I need support. I need ideas of how to handle him. My fear of losing him is happening and I feel the need to hurry. hurry doing what im not sure about. I know he is a unique situation as he had Lung disease, and PDD-NOS. But Im so deperate for something brilliant to be thrown to me.

He currently goes to an ABA based facility to which he thrives in. HOWEVER, as soon as he is home, in publics, well, gee, anywhere then at school he loses all control. What therapies and such do you know about that have helped other Autistic kiddos? I feel like I have him in everything available in the 801, but maybe he needs more focus in each session or more freequent sessions? Ugh, did I sign up for this? Really?