Part 13 WOW! I didn’t think it would take 13 posts to get us from when I stopped blogging after Segundo passed away to the here and now! But we are finally here.
So in my part 12 I shared our new home with you. I believe we are completely settled in. The girls love our home. Every time we come home from anywhere Glenna gets very excited and yells “Yeah!! HOME!!!” Cecelia has adjusted to being in her own bedroom that she shares with Glenna. It has been a month now that she has slept through the night and not migrated into my bed in the middle of the night. Glenna has mastered the stairs and even puts herself down for a nap everyday when I tell her it’s nap time.
This past couple of years has been anything but easy. We went from staying with controlling former friends after Gundo passed then still in the fog of grief I got sucked into a very crappy controlling domestic violence relationship. I was depressed and feeling immensely trapped in Bristol Bay, I felt like I was stuck with no where to go.
I got up the courage to ask for help and moved into the S.A.F.E. Shelter in King Salmon. Got sucked back into the crappy relationship for nearly 2 more months but was smart enough to NOT move back in with him. Then on December 26, 2010 I fully came to my senses and broke it off completely and permanently from my perpetrator. After coming to the realization that I couldn’t make it in King Salmon due to not only lack of housing assistance but also lack of services for Cecelia’s needs I again asked for help.
We left the S.A.F.E. Shelter in King Salmon on Februaray 10, 2011. Filled with hope and scared to death I packed up my two beautiful girls and flew them to Kenai and moved into the LeeShore Center. After nearly five months in the shelter we now have our HOME (still love typing that….HOME) here in Kenai.
We are finally back on our feet after the devastating knock down when Gundo died. I am no longer being controlled by anyone nor having to walk on eggshells. We have our own HOME with our own rules. We are safe, secure, and most importantly we are HAPPY!!!
Not only are we happy but also we are busy. Since Cecelia received her autism diagnosis she receives lots of services. She has speech therapy three times a week, occupational therapy two times a week and physical therapy once a week. Additionally she goes to the special ed preschool 4 days a week where she also receives two more speech therapy sessions. Four days a week I receive respite care for her totaling 10 hours per week. If you count preschool, respite care and all her therapies Cecelia currently has 62 activities a month.
As I mentioned in a previous post Cecelia came off the waiting list for Medicaid Waiver services and we are only waiting for the child psychologist’s report to see if she will receive even more services. If she qualifies then we will continue to receive the 10 hours of respite care plus dayhab services and in home supports. Dayhab will be able to take her to and from all her therapies so Glenna and I don’t have to. In-home supports is like a PCA who will come into our home and help Cecelia with her everyday tasks.
Since I started this post and have been taking a long time to finish it I have received the child psychologist’s report. I am not at all pleased with her diagnosis either. She has decided that Cecelia has ONLY a severe speech delay that was caused by emotional trauma from her father’s passing. I went to her office to discuss her report with her and brought along Cecelia’s Care Coordinator for moral support. We sat there for 45 minutes and argued back and forth. I pointed out to her what I considered a major error in her report. That being that she stated that Cecelia started to regress and lose her skills at 18 months old due to the death of Segundo.
Well she was partially correct. Cece did start to regress and lose her skills at 16-18 months of age BUT Segundo didn’t die until shortly after Cece turned two!!! Yeah there was six months in there with no “emotional trauma” that are key to Cecelia’s diagnosis. To blame all of Cecelia’s regression on the death of her father is simply faulty. But after 45 minutes of both the care coordinator and me talking/arguing until we were blue in the face with this woman she refused to change her diagnosis.
Why is this report so important? Why do we need a different diagnosis you wonder? Well in order to qualify for Medicaid Waiver Services they require the individual to fall within four very specific categories. Those categories are Mental Retardation, Cerebral Palsy, Epilepsy, or Autism. Everyone of Cecelia’s doctors, therapists, teachers, ILP providers, etc has been practically screaming “Cecelia is on the AUTISM SPECTRUM” since we first started this journey. I have read massive amounts of information/studies/blogs/articles/etc. about autism and I know in my heart that Cecelia is Autistic. But this child psychologist doesn’t feel comfortable giving Cecelia that diagnosis at this point. She says that she isn’t going to rule autism out but she wants us to keep up with all the early interventions we are doing at this time and then reevaluate her in a year. The psychologist feels that if she gives Cece the diagnosis of Autism that it will limit her potential for growth because it could lower peoples expectations for Cecelia.
You know that might have been true 20 years ago but I don’t think in this day and age receiving the diagnosis of Autism limits someones potential. I even told this woman that knowing my history and everything that we’ve been through does she honestly think that I would EVER let someone put a limit on my daughter simply because she’s autistic?? WTH?? Yeah that’s not gonna happen!! She at least had to common sense to conceed that point to me. But still won’t change her mind.
So where does that leave us? Her refusal to diagnose Cecelia with autism has resulted in the State of Alaska denying Cecelia additional services. But don’t think that I am just going to say “ooooh okay, thanks for considering her!” shoooot I have already demanded a “fair hearing” as mandated by law? their regulations? whatever you’d like to call it. Additionally, our care coordinator and I have come up with a plan of
attack action to fight/circumvent/throw out the child psychologists diagnosis and get further supporting documentation from Cecelia’s other providers (you know the ones that have spent more than 45 minutes with her!!) that will hopefully (knock on wood, god willing, cross my fingers and toes) get the State to change their minds and provide the above mentioned additional service for Cecelia.
As my care coordinator has told me… Cece has managed to fall through the cracks, she’s not IN the box (the box being what the State has mandated is required for services) and we need to get her INTO the box.
So if you haven’t figured it out from the six paragraphs that I have devoted to this part of this post….I am pissed!!! Not only am I pissed but also I am disappointed and also in overdrive to advocate for Cecelia and demand that she get the additional services she very much needs! Which additionally would explain why it has taken me so long to finish this post because I have been extremely busy making appointments, talking on phone, and and and…..sigh….
Ok moving on….. Other than the day to day struggles and battles to provide the best possible early interventions and help to ensure Cecelia has the best possible chance at being all that she can be, our lives have been good. Cecelia is growing leaps and bounds. She is making immense progress in all her therapies and can even follow direction some times and even dresses herself on occasion.
Glenna is growing up fast. She will turn two years old here shortly. She talks up a storm and is quickly moving into the
terrible terrific twos!!! I need a broken record or a parrot that says “Glenna you are NOT the mommy! Stop bossing your sister!” because Glenna is truly my little husband and has to watch out for her baby (Cecelia)! If that confuses y’all let me explain….
If you’ll remember I was pregnant with Glenna when Segundo passed away. As is custom in our culture we honor and remember our loved ones that have died by carrying on their names. For example Cecelia is named after my late mother..Cecilia. So Glenna Gabriella is after my late grandfathers Glenn and Gabriel. Not only do we carry on the English names of our loved ones but also, some would say more importantly, we carry on the Yup’ik names!! So my late husband was Segundo “Kegginacengaq” Strongheart and Glenna is Glenna Gabriella “Kegginacengaq” Strongheart! She has Gundo’s Yup’ik name and by our culture/traditions that makes her my little husband. Just as Cecelia is my little mom! So that is why I said my little husband has to watch out for her baby (Cecelia) *grin*
So that pretty much brings us to NOW. We are happy, busy, and quite content with the life that I am working hard to build for us. Y’all have survived through 13 posts that caught you up to us here in Kenai today. Wonder what I am going to title my next post??? Hmm might be a daily post (yeah right like I have the time for that?) or maybe a weekly summary supplemented by breaking news posts and poetry etc. I don’t know guess I will just have to wait and see what my fingers type!
Hope y’all have enjoyed these 13 posts! Quyana Cakneq for your continued visits to my blog! Please feel free to comment 😉