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.
Monday, June 30, 2014
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.
Subscribe to:
Posts (Atom)