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.
Saturday, December 13, 2014
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.
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
Diagnosis
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.
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.
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."
http://www.autismspeaks.org/what-autism/learn-signs
http://www.autismspeaks.org/what-autism/learn-signs
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.
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.
Monday, June 30, 2014
A trip to Target
Today we went to Wolfson's rehab for a speech/language evaluation for John. It went well and hopefully we can get him some language therapy outside of school soon. I had to take the kids to Target after to pick up diapers for Kate. I seriously had five diapers left at home so I had to go today to get them. It is sometimes difficult walking into stores with John so I usually will go grocery shopping or to stores alone to purchase items. All the lights, sounds, colors, noises, it is often too much stimulation for him. We walked into Target and John started screaming. This automatically receives stares. Most people just think it's a bratty child that can't be controlled. This is not to say my child never misbehaves.
However, I took this moment as an opportunity to try to calm him and show him how to act in a store. I talked to him calmly and explained what we were at the store for. I had an older lady stop me and ask if there was anything she could do to help. I told her my son had autism and had a difficult time going into stores sometimes. She said "you're a good mom and doing a good job." I'm not telling you this because I have it all together because I don't. I need the Lord's help daily. I do think we need more people in the world like this woman though. I was so thankful for her encouraging words instead of judgement.
However, I took this moment as an opportunity to try to calm him and show him how to act in a store. I talked to him calmly and explained what we were at the store for. I had an older lady stop me and ask if there was anything she could do to help. I told her my son had autism and had a difficult time going into stores sometimes. She said "you're a good mom and doing a good job." I'm not telling you this because I have it all together because I don't. I need the Lord's help daily. I do think we need more people in the world like this woman though. I was so thankful for her encouraging words instead of judgement.
Thursday, June 26, 2014
Psalm 121:1-2
121 I lift up my eyes to the hills.
From where does my help come?
2 My help comes from the Lord,
who made heaven and earth.
From where does my help come?
2 My help comes from the Lord,
who made heaven and earth.
A little about the bear
My sweet boy was born in 2011. We were eagerly excited to meet our precious gift from the Lord. I cried with joy as they placed this 7lb 8oz baby into my arms. All was right with the world. We were in love! John made normal milestones. Crawling around 7 months, walking around 14 months. He babbled as an infant and babbled dada around 8 months. John said not many but a few more words in the following months. At fifteen months the doctor asked about how words he had. About five, I answered. That's ok, she answered, but if you don't see growth here is a brochure from Early Steps. I heard the same thing I had heard from many of others. I had heard that boys developed slower than girls and that every child was different.
I had a very active and loving boy. John had an unusual sense of direction and great memory for a young age, crying every time we went past his friend, Emma's neighborhood, crying when we made U-turns, or went directions that were out of the ordinary. John turned 18 months and we returned to the Dr. I was asked how language was developing. John had maybe 10 single words in his vocabulary. We really would like to see at least 15, she said. I received another Early Steps brochure. I thought about calling but I didn't as long he was making growth. John was learning new words, even saying the word "touchdown." He seemed more interested in talking. We were doing flash cards and learning sign language and then the words started coming out less often. John's lack of communication was frustrating him and often caused many tantrums. I called Early Steps when he was 20 months old. Because Early Steps is a state funded program there was a short wait. We had to wait about 2 months. He was 22 months old when he was evaluated the first time.
At the evaluation they check the five areas: gross motor, fine motor, social/emotional, communication and cognitive. My son scored very high on the gross motor and low on communication. However, his deficit wasn't enough to qualify for services. I left somewhat relieved but also disappointed. I just thought his language was taking a little longer to develop and he was focusing on the physical developments of his body. My son communicated to us in LOVE, giving hugs without saying a word.
John turned 25 months and my daughter, Kate was born. Life was busy. My daughter was born with hip dysplasia and had to wear a hip brace for two months. Shortly after we started going to PT for her. July came and I decided to call Early Steps. We went in August and sure enough, my son had such a gap in the communication and cognitive areas that he qualified for a speech therapist to come to our home. So we had therapy in home from September to January. In January, John turned three and transitioned to the school system. His teacher has been wonderful and the class is seven children with three adults. Since being in the class John has learned his name and comes home knowing new words everyday. He is making progress between me and my husband working with him and his wonderful teacher.
I had a very active and loving boy. John had an unusual sense of direction and great memory for a young age, crying every time we went past his friend, Emma's neighborhood, crying when we made U-turns, or went directions that were out of the ordinary. John turned 18 months and we returned to the Dr. I was asked how language was developing. John had maybe 10 single words in his vocabulary. We really would like to see at least 15, she said. I received another Early Steps brochure. I thought about calling but I didn't as long he was making growth. John was learning new words, even saying the word "touchdown." He seemed more interested in talking. We were doing flash cards and learning sign language and then the words started coming out less often. John's lack of communication was frustrating him and often caused many tantrums. I called Early Steps when he was 20 months old. Because Early Steps is a state funded program there was a short wait. We had to wait about 2 months. He was 22 months old when he was evaluated the first time.
At the evaluation they check the five areas: gross motor, fine motor, social/emotional, communication and cognitive. My son scored very high on the gross motor and low on communication. However, his deficit wasn't enough to qualify for services. I left somewhat relieved but also disappointed. I just thought his language was taking a little longer to develop and he was focusing on the physical developments of his body. My son communicated to us in LOVE, giving hugs without saying a word.
John turned 25 months and my daughter, Kate was born. Life was busy. My daughter was born with hip dysplasia and had to wear a hip brace for two months. Shortly after we started going to PT for her. July came and I decided to call Early Steps. We went in August and sure enough, my son had such a gap in the communication and cognitive areas that he qualified for a speech therapist to come to our home. So we had therapy in home from September to January. In January, John turned three and transitioned to the school system. His teacher has been wonderful and the class is seven children with three adults. Since being in the class John has learned his name and comes home knowing new words everyday. He is making progress between me and my husband working with him and his wonderful teacher.
Wednesday, June 25, 2014
Blue "Boom Boom Bear"
Let me back up and explain the name of the blog, The Blue "Boom Boom Bear." When John was born and would get upset my husband and I would sound out the melody of the "1812 overture." When it came to the cannon parts, we would exclaim "BOOM" to John. John always loved that part and it would calm him or at times make him laugh. He became our "boom boom bear." The blue is added because "Light It Up Blue" is for autism awareness.
The appointment finally came...but we weren't finished.
The day for the appointment came. I could barely sleep the night before. I had accepted that my son had autism but hearing it from another person would be a different story. No parent wants to hear in so many words "I'm sorry but there isn't something right with your child." We arrived early and the Neuropsychologist did her observations and the CARS (Childhood Autism Rating Scale) assessment for John. John scored mildly autistic. The outlook was good. She said we couldn't cure autism but early intervention would help John tremendously.
The Dr. informed us the CARS wasn't enough for an official diagnosis to be written though and that we would need another evaluation, the ADOS. However, if we did it in her office, it would cost us about $1000. She suggested we ask the school district to do the assessment and she would sign the diagnosis. Just in case you don't know, a diagnosis is needed to fund therapies. My son would need intensive language and ABA therapy. So our next step was to contact the school district. Long story short...no help. The school psychologists are booked with summer appointments and the earliest my son could have testing would be September.
This was just not good enough for me so I have moved forward with another option. Pray for us as we continue this journey.
The Dr. informed us the CARS wasn't enough for an official diagnosis to be written though and that we would need another evaluation, the ADOS. However, if we did it in her office, it would cost us about $1000. She suggested we ask the school district to do the assessment and she would sign the diagnosis. Just in case you don't know, a diagnosis is needed to fund therapies. My son would need intensive language and ABA therapy. So our next step was to contact the school district. Long story short...no help. The school psychologists are booked with summer appointments and the earliest my son could have testing would be September.
This was just not good enough for me so I have moved forward with another option. Pray for us as we continue this journey.
We're sorry, you'll be put on a waiting list
The ball started rolling. I got a call from the referral coordinator at the peds office. I contacted the intake coordinator for the development pediatrician office. They sent me a packet of no joke, 30 pages. Questions included "What were the mother's grades in high school?" Really, my high school grades may determine if my child has a disability?!? I also had a question that asked if I had any sickness during pregnancy. I mailed in the packet as soon as possible and sat and waited. And waited. A few weeks later I got another phone call. "Ma'am we don't take your son's health insurance plan so we will be unable to see him unless you want to pay out of pocket for all the tests."
Back on the phone. I talked to the referral coordinator and there was no one else in town that could help my son. So, we switched health plans for John. Another month went by waiting for the new insurance. April 1 the new insurance began and I called the office. "You are able to see my son, now." The response was "We're sorry but you'll be put on a waiting list." I was informed the waiting list could take a year or in some cases longer. Really? So much for early intervention. I had to help my son. I could NOT wait a year. I made an appointment at Nemours Children's Clinic for mid June. The first appointment available. Until then, I talked with parents of children who had autism and did whatever I could to help my son during the waiting process.
Back on the phone. I talked to the referral coordinator and there was no one else in town that could help my son. So, we switched health plans for John. Another month went by waiting for the new insurance. April 1 the new insurance began and I called the office. "You are able to see my son, now." The response was "We're sorry but you'll be put on a waiting list." I was informed the waiting list could take a year or in some cases longer. Really? So much for early intervention. I had to help my son. I could NOT wait a year. I made an appointment at Nemours Children's Clinic for mid June. The first appointment available. Until then, I talked with parents of children who had autism and did whatever I could to help my son during the waiting process.
He said the "A" word and I didn't believe it.
"Has anyone ever talked to you about Autism about your son?" asked the doctor. In my mind "WHAT? THIS DOCTOR IS CRAZY? I blurted out, no. We had dialogue back and forth about my son which we weren't even at the doctor for. We had been there for my daughter that day. I shrugged the visit off and went about my week but kept asking myself if my son could have Autism. I was a special education teacher before becoming a stay at home mom so surely I would be able to identify if my son had autism. We even had a M-CHAT (Modified Checklist for Autism in Toddlers) done with Early Steps (Florida 0-3 early intervention program) a few months ago among many other assessments. John had quote "red flags" on a few questions but the ladies said it wasn't necessary to refer me on to anyone. John continued receiving speech at home through Early Steps and was making small improvements.
A few months passed and I didn't give any thought to the doctor and his crazy comments. January rolled around to go to John's three year old well check. We saw a different doctor, one of our favorites in the practice. The nurse asked normal developmental questions "Can your son tell you if he is a boy or a girl?" I answered no. Not only could John not say boy or girl, he didn't know the difference. The nurse asked "Can your son tell you how old he is?" Again, no. This is was not something my child could understand or tell me. "Is your child able to say his name?" I answered no. My three year old could NOT tell me his own name. The doctor entered and asked me about John and I told her he would be going to school for a PreK class and speech therapy. She responded I want to refer you to the developmental pediatrician in Jacksonville because your son may be on the autism spectrum.
This was the beginning. At first I was in denial but I looked more and more at my son's "symptoms." I had to do something for my son, because I AM his advocate.
A few months passed and I didn't give any thought to the doctor and his crazy comments. January rolled around to go to John's three year old well check. We saw a different doctor, one of our favorites in the practice. The nurse asked normal developmental questions "Can your son tell you if he is a boy or a girl?" I answered no. Not only could John not say boy or girl, he didn't know the difference. The nurse asked "Can your son tell you how old he is?" Again, no. This is was not something my child could understand or tell me. "Is your child able to say his name?" I answered no. My three year old could NOT tell me his own name. The doctor entered and asked me about John and I told her he would be going to school for a PreK class and speech therapy. She responded I want to refer you to the developmental pediatrician in Jacksonville because your son may be on the autism spectrum.
This was the beginning. At first I was in denial but I looked more and more at my son's "symptoms." I had to do something for my son, because I AM his advocate.
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