Sharing from A Ventography’s blog. Please read and make informed decisions regarding your children.
(This post was originally written February 4th)
This week was really a test for me and my family. We were literally going a hundred different directions each day with this new schedule of ours. Let’s start with my hubby. This semester he has class from 8:00AM to 1:00PM on Monday’s, Wednesday’s and Friday’s, he works after his school day is over on Monday until about 6:00PM & has Wednesday and Friday off from work to actually be a student. Oh did i mention he has night class Tuesdays & Thursdays from 6:00PM to 8:00PM after his full work day of 6:00AM to 5:00PM? He also works on Saturday’s and Sunday’s from 6:00AM to 2:30PM.
My week isn’t much better. I’m off work Sunday’s and Monday’s. When i say “off” it’s more like i’m home with my 4 year old, 3 year old and 11 month old infant sons. I make sure my son David goes to preschool every Monday, Wednesday and Friday morning from 8:30AM to 11:30AM and once he is out of school he is dropped off by the bus so that he can have ABA therapy for the rest of the afternoon. My Tuesdays and Thursdays are filled by dropping off both David and my oldest son, Christian at preschool together. David has ABA therapy all day both days. I head off to work from 8:30AM to 5:00PM and back to the school i go to pick up the boys. My infant son, Ricky is at home with grandma and grandpa. Somewhere in there i have to figure in breakfast, lunch, dinner (trying to go GFCFSF), cleaning the house (with products that won’t make my family itch to death or make eczema flare up), laundry (with soap that’s homemade & hypoallergenic), baths for the boys (mild soaps – that won’t cause skin irritation or make eczema flare up), and sleeping. Ha! what’s sleeping?!
This week I had a series of appointments set with Kaiser for David and Ricky. Wednesday afternoon was an appointment for David with the Allergist, Thursday afternoon with the ENT, Friday morning for Ricky with Audiology & Friday afternoon for David with Dermatology. Phew! I’m glad that’s over. $120.00 in co pays later i pretty much discovered that the doctors were telling me the same things. The synopsis of each of these appointments was, “You are really well informed” and “Your children are very lucky to have you.”
I suppose it was nice to hear that i’m an amazing mother, i’m well informed, i’m on the right track, and i’m doing what is recommended and then some for my boys. I guess i was caught off guard. It’s amazing to me that i got more information from other Autism moms and support groups then from the experts. I’ve had more friends tell my what to look into and what to stay away from then the doctors have told me. Who are the professionals around here?
I’m just trying to balance everything but i’m noticing that this is really hard. That’s not even mentioning the recent blow that CVRC gave me on January 30th – that’s another blog post to come.
The holidays are behind us now and my husband and i are trying to get everything back to “normal.” I’ve noticed a few changes in the boys since they were on break. Christian has started to speak more clearly and David is saying a few words here and there and making more noises/sounds. Yay!
I haven’t completely eliminated all gluten or casein from our diets, but I got rid of milk & yogurt while trying lots of different gluten free products. So far it’s not so bad. The boys won’t eat some of the food but they will try others. Its very hit and miss at this point but I’m not giving up!
I thought after having my hernia repair, that I would have more time to read a few books, apply for TACA or Generation Rescue grants, attend another coffee talk meeting and attempt to relax. This recovery has really proven otherwise – but that’s ok.
Despite the crazy schedules my husband and I have, Rick in college, the long drives to work, school for the boys, arranging daycare for my baby, applying for head start for Christian, David starting preschool, David’s ABA, Christian to start ABA soon, IEP’s, exits, assessments & IPP’s done, i still have the feeling that i’m not doing enough for the boys. I suppose by way of biomedical intervention & DAN! Dr.’s, I need to do some more research and just do it already!
I forget to stop and look at everything going on around our little house and how everyone and everything has changed these past 10 months. We’ve come quite a long way since March 15, 2011 when David (my middle son) was first diagnosed with Autism at age 2 1/2. I have to say, I never want to go back to that time.
I remember the sinking feeling, anger, hurt, mourning, denial and crying the entire way home from the Kaiser ASD Clinic in Rancho Cordova. I don’t remember much else about that few hours after that news, except that after a day or so, I began calling every place the doctors mentioned that i should call. I called Kaiser genetics, Kaiser mental health, Kaiser allergists, Central Valley Regional Center, EPU and Kings Canyon Unified School District – to start.
I don’t think I was mentally prepared for the whirlwind of people who met with Rick and I in our home. There have been appointments, meetings, assessments, therapies, thousands of questions, paperwork on top of paperwork and lots of education.
I took classes on how to be an effective parent to children with Autism – and the class was awesome!
I’ve realized that if I don’t speak for my boys, they will go unheard and unseen. It’s just something you have to do as a parent of a special needs child. I’m still somewhat stubborn, insanely busy, a mom to 3 boys under 4, working 40 hours a week, couponing like crazy, and trying to be everything that I have to be. I haven’t pulled my hair out…yet….
I guess i didn’t know I had it in me…
Great read! ZERO TO THREE: Behavior & Development.