Therapy for Ashlynn
Organized by: Karen Bailey
Karen Bailey via Crowdrise
October 05, 2015
Thanks for stopping by, friends. This site has been set up to help Ashlynn Bailey, a darling three-year-old twin. Ashlynn has just been diagnosed with Autism and Sensory Processing Disorder. The neurologist has told the family that weekly occupational therapy is her best possible chance for thriving. Unfortunately, her insurance company refuses to pay for any therapies. The OT visits are $100-150 per visit and she was recommended 2-3x a week. In-home care has been recommended as well, but that is also costly. Would you consider giving toward Ashlynn's therapies? We would be so grateful. Together, we will watch this adorable little girl have the best possible life.
A NOTE FROM ASHLYNN'S MOMMY: We've had a busy couple of weeks with Ashlynn. Over the past few months we have been trying to get answers to some things we had noticed. We started with an OT evaluation at the end of April. At that time the OT gave us the diagnosis of SPD (sensory processing disorder) and recommended OT 2-3 times a week. Our insurance doesn't seem to think that it is something medical and would not cover the therapy. We went to our pediatrician who had some concerns and referred us to a neurologist. We went there last week. He diagnosed Ashlynn with mild autism. Because of that and concerns the pediatrician had, we were referred for an EEG and MRI (nearly $4000 out of pocket). Both of these test came back with no abnormalities. This means that we do not have any other causes such as seizures or cerebral palsy, both of which had been concerns for the doctors. We still have another OT evaluation, speech evaluation, and an evaluation with the school district. We are hopeful that through one or all of these paths we will be able to start helping Ashlynn be prepared for school in a couple of years when she is supposed to start. Ashlynn is still our sweet, smart girl that she has always been and now we have some guidance on how to start helping her. Thank you for helping us raise the necessary funds to help Ashlynn on her journey toward a healthy, happy life.
We have been doing the Mendability program for a few weeks now. We have found things that Ashlynn likes and things she can't stand. We have also had quite a bit of regression from her. We are told by the OT that this is normal and to ride it out. Easier said than done. As of this evening I have also applied for a grant from United Healthcare Children's Foundation in hopes that we can get her therapy covered that way. We are still needing assistance to keep her going in the Mendability program. Our appointment with the school district is next week to hopefully get her some help that way as well. Please share and keep us in your thoughts and prayers as we continue to fight this battle.
We are still doing Mendability. She does ok with it most days. She has started talking more again most days but it can still be a roller coaster of how she responds to things. We had our initial screening and then full evaluation from CISD. We are now in a holding pattern waiting on their recommendation and what they will offer her. The grant was approved but will not cover much financially for her therapy. It equals to about 16 sessions of therapy, either speech or OT and she needs much more of both, for the next year. While we wait to get funds from some of it we need to raise an additional $380 (making the total raised so far $1070) to start her on outside OT and speech as soon as possible. One thing the neurologist had told us was that the more therapy we do for her at this age the better off she will be later. I have been meeting with some great contacts and one thing that keeps coming up is getting her into ABA (applied behavioral analysis) which we know won't be covered either. Pray for guidance as we try to make the right decisions for our Ashy bug.
We decided to go with the OT that did her initial evaluation and her first appointment with her was today. She did great with it. We have seen some more regression lately but tonight she did really well. We got some good and bad news today. The good news is the OT will work directly with the grant to be paid so that we don't have to pay her first and be reimbursed. That is a huge relief as we won't have to front the money and wait to get it back. The bad news is that the grant will not cover the online based therapy we have been doing. This means we continue to pay this out of pocket or we stop this therapy. We will be praying to see what is best as paying for this out of pocket is an added expense on top of everything else that has been happening lately.
After looking over where this journey has gone so far I figured it was time to give an overlook at what we've been able to do and not. Our insurance will not cover speech therapy, occupational therapy, ABA (this has been recommended by some), or any evaluations of these. At this time, we have not been able to get her in for a speech evaluation. She will be going to OT once a week for the next 15 weeks (that's as far as the grant covers) and then we will have to see where everything is at that point. We have had no news from the school district but they have until mid-November to give us their report of recommendation of services. They may or may not recommend services. If they don't, we will have to see about getting an advocate to assist us with a bigger fight to get her services. We have been doing Mendability, an online based program that we do with her at home, to give her some therapy for the past two months. We had hoped that the grant would be able to go towards continuing that but it does not cover the online program. We are at a point of needing to make a decision within the next week as to what we are going to do regarding this program. The options are trying to pay on our own for the program (not sure that this is financially possible for us at this time), stopping the program, or pausing it until we either find more information/coverage. Ashlynn has good days and bad. Some days are a mix of both. We have had to learn a new way of approaching everything from waking up, going to the store, going to church, eating, and even going to bed. Every day is still a learning process for us and for her.