Saturday, December 13, 2014

Genetics testing

Several updates for our precious boy. I was debating whether to update because sometimes I feel like it's odd sharing so much of our journey over the internet. I do hope it would encourage others or perhaps help someone who may be seeking answers. We had an appointment yesterday with the geneticist. I guess I should have paid more attention in Biology class in college because there is so much that is involved with DNA. The doctor basically said they test for over one million things when testing DNA and closer to two million. There is so much out there they still do not know.  They are "mapping" new things for DNA all the time. It's amazing how complex God made our bodies. They still are testing which chromosome abnormalities cause Autism. Currently they only know of about 46, which is very small out of millions.

We discovered that John is missing part of his chromosome 2 which may be the reasoning behind his Autism. If he was missing more pieces of the strand it would have caused a more severe disability. The doctor was very encouraging and told us to stay away from anyone who told me my son couldn't learn or do anything.

The doctor prescribed John a vitamin also to help with making fatty acids for the brain. We will try this for a few months and see how he does. Also, good news, we are in the process for starting ABA therapy. We are on a waiting list but that is at least an improvement since we were denied the first time. John is doing great in speech therapy but still has some struggles with his occupational therapy.

Tuesday, November 4, 2014

After 11 months

We were referred to the developmental pediatrician in January. Almost 11 months later...we had our appointment today. John saw the neurologist there. The appointment took almost two hours. The doctor asked me questions from his birth to eating habits to asking questions about if I could see a difference between my typical child vs. my ASD child. Some of the questions and comments I thought rather rude. I understand their research and trying to find out more about Autism but it's almost if they are trying to find something to "blame" for his Autism.

Otherwise, I think we had a good visit. The doctor said John is in the moderate range for Autism and either will maintain or improve. The doctor we saw back in June at Nemours was concerned John may be having absence seizures and would need an EEG. The doctor was not concerned and said an EEG was not necessary. They gave us some bloodwork orders to be done for John to check for Fragile X syndrome and other possible disorders. This will let them and the geneticist we see in December know if the type of Autism John has is environmental or genetic. Whichever is the case, we love him the way he is and he is fearfully and wonderfully made!  Our creator does not make mistakes!

The next step is that the CARD center and CMS are going to help us to get ABA therapy which John's insurance originally denied :( We are doing everything we can to make sure he is getting everything he needs.

Wednesday, September 17, 2014


We finally have an official diagnosis from Hope Haven Children's Clinic. We have been in this process since January. It's good news but also somewhat sad news. There is now an official piece of paper stating my son has Autism Spectrum Disorder. However, this doesn't change who he is. This doesn't limit us. It is hard as parents for us to sit in a meeting and hear how our child isn't like typical children. However, this helps us move forward.  Now that we have a diagnosis we can get ABA therapy for him and also apply for services at the Agency for Persons with Disabilities. More great news...the developmental pediatrician's office finally called me this week. John has appointment in November with the developmental pediatrician/neurologist. We can ask some more questions then and see if they have help they can offer too.

Thursday, September 4, 2014

A big decision

 “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?" -Matthew 6:25-27. 

God has been faithful. God has been more than faithful. My son was born in January 2011 and after maternity leave I worked one month at the school where I taught to help tie up loose ends and administer the FCAT. I resigned in April 2011. On paper, it never looked like it would work for me to stay home. We were always $200-$800 short a month. However, we always had money in the bank, a roof over our heads, and food in our bellies. There is no way to explain it but GOD.

This past spring things got tight, really tight with finances. My husband talked about whether I should go back to work to help bring in some extra income. My desire was to be at home with my children and help provide opportunities to help John with therapy during this crucial time. However, I wanted to help with finances. I began searching for work. I went to four interviews over the summer and the door shut at every opportunity that arose. I finally decided to pursue substitute teaching. It seemed like a great opportunity to work part-time and chose my hours. The day after I made my appointment with the subbing company I received an email from a school asking if I could come interview for a full-time position the following day. I went to the sub company on a Tuesday and filled out the paperwork. The following day I went to the school for the interview and they offered me the job on the spot. It would be a great opportunity to work at a great school I used to teach at. In the moment it felt exciting but I got into the car and cried, and cried until I made it to the daycare.

I prayed "Lord, if this what you want me to do, please let everything fall into place." I walked in and they said " I'm sorry, we are all full." By the way, there aren't a lot of options for daycare around where we live, as most would call it the boonies where we are. I cried again most the way home. I called my pastor's wife and asked for advice. We talked about the crucial growth time this is for John and how the therapies have helped him grow. We also talked about talking to my husband about what he would want and making a decision that was best for our family. We didn't want to have the financial gain if it meant our marriage would suffer, John would regress, and I would have added stress.  I talked to John's teacher when I picked him up and talked to her about daycare situations because John would have to be picked up and dropped off by a bus from daycare. She talked to me about how daycare may or may not be trained to deal with children with disabilities. This was a big factor that weighed on me. If John couldn't communicate what he wanted or got upset and had one of his "moments" he could end up hurting someone or himself as they may not be trained how to deal with children with autism and know how to help him calm down.

I didn't know what to do. Work to help or be available to help my son. This was a hard decision to make and it took my husband and I HOURS to decide. I couldn't sleep all night thinking of what to do but at 4am I woke him up saying I didn't think I could do it. So I turned the job down. You probably think I'm crazy but I have a small window to help my son and I don't want to look back and say "hey, things were comfortable but I really wish I invested more time into my kids during that period." I don't know what will happen but I know the Lord will take care of my family. Things may be hard, REALLY HARD, but I would rather invest that time into my kids, the therapy into John than have two pennies to rub together. 

Thursday, August 14, 2014

Going a mile a minute

This week has been busy. I commend anyone who has children with special needs because it is hard work and it takes a lot of time and energy. Our week started with my parent interview at Hope Haven. My friend watched my kids while I went to the appointment. I got asked questions like "does your child smile back if you smile at him?" And "Does your child acknowledge you if his name is called?" I sat for 1.5 hours painting a picture of my child to the specialist. The next day John and I went to the evaluation portion. Another friend of mine watched Kate. I am so thankful for my friends helping me during the testing process. The first hour he played with toys and the specialist tried to get John to do various tasks. Some he could do and some he couldn't. When it came to pretend play, he was not interested at all. He did really well until we transitioned to occupational therapy. By this point he was done with their requests and did have a few tantrum moments. Transitions are hard for John. They told us they would follow up with us in a few weeks. We also went to speech therapy twice this week at Wolfson's which is going well and helping John communicate better.

Like I have stated before this is a long process. I feel like most of our days now are filled with therapies and I spend time more time teaching and doing things that may come more natural for others. This is our life right now. But I wouldn't trade it for anything. My days will be filled with occupational therapy, speech therapy, teaching my child to play with toys the "correct" way, and learning how to cope in unfamiliar situations. I may be spending a lot of time and have busy weeks but this intervention will matter now so we may not have all these things later.

Tuesday, July 29, 2014

Autism signs

I saw a post tonight from Autism Speaks-Jacksonville. It is for signs of Autism. I wanted to share this so others may also be able to seek intervention sooner rather than later. For so long I didn't know anything was "wrong."

Thursday, July 10, 2014

Somedays I feel discouraged

Today I'm feeling discouraged. I received a call from the nonprofit children's clinic wanting to schedule us for the evaluation. I know I should be saying YAY! I am happy it is getting us closer to having a diagnosis.  I was upset because they were unwilling to work with me. They wanted me to come on a Monday for a parent interview in which I can't have my child with me. I asked if they could do this before August 5 so I wouldn't have to get a babysitter. The answer was no. The lady explained I have to be there at 9am for the parent interview. I drop my son off for school at 8:30am. She said that was the only appointment slot. I told her I live in Green Cove Springs and their office is on Beach Blvd. Sorry lady but I don't know what world you are living in that you can travel from GCS to Beach Blvd in 30 minutes in rush hour traffic. Please let me know how you do it.

The other thing was that his actually evaluation is scheduled for the first day of school. It saddens my heart because John will miss the "first day" picture for the scrapbook and the fun activities. Also, he will have to miss another day of school the following week for a speech evaluation. SIGH!

I did call the CARD center(the first Dr. we were referred to in January) today just to see if there was any progress at that office, the receptionist told me the waiting list has not moved up any and no new slots were available. This is a LONG process. Even when we get the official diagnosis, it will then be getting the insurance to approve ABA and then get put on another waiting list for the Agency for Persons with Disabilities. I sometimes want to shake someone and say "Why won't you help my son?" It seems that unless you have money or know someone, you are of no importance to these people. My job is to get my son the earliest and best intervention possible to help him to grow and learn.