Journey Through Autism, Continues
By the time Jade was five, we were knee deep in her daily therapy sessions, weekly dance and gymnastic classes. We had found the best selection of therapists that responded with her and she was making progress.
One of the struggles we faced was our fight against medicating her. Every doctor we had seen had tried to force to put her on the normal "autism medication cocktail" right after her official diagnosis. This was not an option to me, as at the age of two, I refused to try the medications first. Our next option was dietary.
Our next stop was to see an allergy/GI specialist because she still not growing or gaining weight. At the age of 5, she was still in 2t clothing. After allergy testing we discovered she had many food allergies. With this in mind we placed her on an elimination diet, carefully controlled her food, and made everything from scratch.
Once the "offending" foods for her body had been eliminated, and her system cleansed, her body slowly started growing and gaining weight.
Additionally, during this time, we began teaching her sign language. Implemented PEC's (or Picture Exchange Communication System) in the house, labeled EVERY with the word and picture of the sign, and learned a new way to communicate.
During this time she was in therapy, we rarely heard a word come from her mouth. Jade communicated best with noises, fits, screams, crying, and melt downs. Learning how to handle her melt downs and sensory issues was important for the family and her safety.
Two key comments I remember making to Jade that helped me realize her thinking pattern were "sit down and plant your feet" and "knock it off." When she was told to plant her feet, she did just that. After looking for her I found her out side looking lost and confused with her feet buried in the dirt. After being told to "knock it off" (some behavior) she went running to her room, grabbed all her blocks. Came running giggling with her shirt stuffed. Very carefully, Jade lined up all her wooden blocks on the back of the couch, then proceeded to hit them as hard as she could across the room.
Once I told her (without realizing what I was doing), to "knock it off", so she did just that. Lined her blocks up once again, and knocked her blocks off the back of couch. She did this over and over until I took her blocks, resulting in another fit. She was confused and lost. Why? She was doing exactly as I had just told her to do several times in a row.
Suddenly realizing what was going on I tried to get her playing with her blocks in a different fashion. This was not going to happen. She dead set on following my instructions. At this point, I simply bit my lips and let her "knock it off" until she was finished.
With this realization, I was finally able to reach out to her and peek inside her boxed up world. We were finally able to start experimenting as a family with new ways to try bond, stop her temper fits, increase communication skills, and learn new things about her.
During this time, I learned to accept the fact that a child with autism is just that. A child with autism and perfect as they are. I also became to see the world of autism like that of a remote controlled toy.
Some remote controlled toys are only programmed to move forwards and back, others can also move side to side. While others have no limitations in their movements. Why children with autism are not wired to think and behave like other child is something we may never know. However, I know my daughter has overcome so many obstacles in her life to become who she is.
I also know that because of who she is, and what she has become, she can and will become whatever she puts her mind to.
Friday, April 11, 2014
Monday, April 7, 2014
Continuing on with our journey through autism.
After Jade was officially diagnosed with the 299 autism diagnosis, many new doors that I had no idea were available opened up for her.
During this time we lived in AZ and there was a special program designed specifically for autistic children in the early intervention program. This program offered state funding for hours each week of therapy. When I say hours I mean hours. Her therapy was basically a full time job.
She continued the physical, occupational, feeding, and speech therapies. Then in addition, she started receiving community support, ABA (applied behavior analysis), sacrocranial, and behavior modification. Basically, if there was anything that might help these children with developing skills they were given the therapy hours.
We told to put her in dance and gymnastics as well for additional therapies as they would work both fine and gross motor skills and offer even more therapy hours without her realizing it.
Her comprehensive team came to the house for the first meeting and we sat and developed her FSP or family service plan. Basically, what skills did she need to function and how would we great those needed skills into goals. Next, how would we break those goals into achievable steps for her. Finally, what role would each therapist play, and how would they use us as a family and team with the therapists to help her learn what was needed. Seems simple? Well not as simple as it seems. Especially when your child is not hitting any of the needed mile markers needed.
Finally we had a plan in place and started working with her team. The first few months were difficult as we had to weed though the therapists to find the right match for Jade. Not every therapists had the personality to work with her. Many she simply shut out and refused to work with. This had been explained as normal and that we would have to sift through their therapists until the right team was in place and they were used to moving until they found the right kids.
This was not an easy time for the family. Everyday Monday-Saturday we had therapists in and out the home. We had very little private family time. The therapists pulled Celidah in and taught her how to play with her sister. They brought in neighborhood kids, and they played with the girls. In time, the therapy sessions became neighborhood play times.
Learning to play was very important. Why? Well, children learn through play. They explore their world through play. In time, the things they learn from play develop their adult abilities and how they cope. It was through all this "play time" that Jade eventually started coming out of her shell and trying new things.
We created social story videos for the girls. They learned how to answer the door, make beds, play kid games, and many other things by staring in their own movies. They loved watching these movies and sharing them with their friends. Most important, Jade started responding correctly in some situations because of her movies.
After Jade was officially diagnosed with the 299 autism diagnosis, many new doors that I had no idea were available opened up for her.
During this time we lived in AZ and there was a special program designed specifically for autistic children in the early intervention program. This program offered state funding for hours each week of therapy. When I say hours I mean hours. Her therapy was basically a full time job.
She continued the physical, occupational, feeding, and speech therapies. Then in addition, she started receiving community support, ABA (applied behavior analysis), sacrocranial, and behavior modification. Basically, if there was anything that might help these children with developing skills they were given the therapy hours.
We told to put her in dance and gymnastics as well for additional therapies as they would work both fine and gross motor skills and offer even more therapy hours without her realizing it.
Her comprehensive team came to the house for the first meeting and we sat and developed her FSP or family service plan. Basically, what skills did she need to function and how would we great those needed skills into goals. Next, how would we break those goals into achievable steps for her. Finally, what role would each therapist play, and how would they use us as a family and team with the therapists to help her learn what was needed. Seems simple? Well not as simple as it seems. Especially when your child is not hitting any of the needed mile markers needed.
Finally we had a plan in place and started working with her team. The first few months were difficult as we had to weed though the therapists to find the right match for Jade. Not every therapists had the personality to work with her. Many she simply shut out and refused to work with. This had been explained as normal and that we would have to sift through their therapists until the right team was in place and they were used to moving until they found the right kids.
This was not an easy time for the family. Everyday Monday-Saturday we had therapists in and out the home. We had very little private family time. The therapists pulled Celidah in and taught her how to play with her sister. They brought in neighborhood kids, and they played with the girls. In time, the therapy sessions became neighborhood play times.
Learning to play was very important. Why? Well, children learn through play. They explore their world through play. In time, the things they learn from play develop their adult abilities and how they cope. It was through all this "play time" that Jade eventually started coming out of her shell and trying new things.
We created social story videos for the girls. They learned how to answer the door, make beds, play kid games, and many other things by staring in their own movies. They loved watching these movies and sharing them with their friends. Most important, Jade started responding correctly in some situations because of her movies.
Friday, April 4, 2014
Journey into Autism
With this month being Autism Awareness month, I thought I would share a bit our journey through the world of autism.
Our family started out like every other family. When our oldest was born, she was a bundle a energy and learned everything very quickly. She crawled, walked, talked, ate, did everything early. Celidah had even taught herself how to read and had moved onto chapter books by the age of 3. In my mind this was normal for children as she was my only experience.
Two years later, Jade was born. After a few minor complications during her delivery, and the cord being wrapped around her neck we looked forward to the same bundle of energy her older sister had been. We soon discovered this would not be Jade's start.
Very quickly we realized that she was not meeting her milestones, growing like she should be, had eating problems, was tongue tied. In short, these developmental milestones were falling further and further behind. She was falling behind in both her developmental and physical milestones.
An early childhood development evaluation determined she needed early intervention and not just minor intervention. Once the evaluation was completed, she qualified for speech, feeding, physical, and occupational therapy. After about two years minimal progress had been made.
Around this age we had also been instructed to have an Autism screening done. By this point, she had already had other neurological screenings done to rule out more severe disabilities. Her doctors and therapists wanted to know why her growth was still very slow, she was not walking, babbling, not eating unless it came from a bottle,
I had friends with children with autism as well and we had talked and I knew she had to many of the signs to ignore, yet I felt if I worked with her more I could change her. Maybe I could love the autism out of her.
I think this is the dream of every parent of a child with a disability.
Finally, one day I realized I needed help and a diagnosis. One this day, both girls had been sitting at the table playing with playdough. All Jade would do was scream at her blob. Of course playdough will not respond to a screaming child. Well in her fit of rage she flopped off the chair, landing head first on the linoleum covered cement floor. She pulled herself up to the chair like nothing had happened. At this moment, her lack of reaction to pain told me something was not right. I broke down and made the appointment for the screening. By this point she was nearly three.
Because she was nearly three, the diagnoses was needed, for her to continue her therapies.
I thought I was prepared for the appointment. However, I learned I was far from emotionally prepared. Yes, I knew the facts. I knew the signs. I was not ready to hear, "your child has severe/profound autism."
During this appointment nearly 13 years ago, she could not keep eye contact, had no verbal skills, in fact the list of things she could not do was terrifying to me. The doctor diagnosing her, let me know that she would never walk flat footed, gain verbal skills, be able to attend regular school, function in society. In fact, we were told she would by the time she was a teen she would require the skills only in a specialized group home.
I left that appointment totally devastated. According to that doctor my child had no chance for any kind of a future.
Our family started out like every other family. When our oldest was born, she was a bundle a energy and learned everything very quickly. She crawled, walked, talked, ate, did everything early. Celidah had even taught herself how to read and had moved onto chapter books by the age of 3. In my mind this was normal for children as she was my only experience.
Two years later, Jade was born. After a few minor complications during her delivery, and the cord being wrapped around her neck we looked forward to the same bundle of energy her older sister had been. We soon discovered this would not be Jade's start.
Very quickly we realized that she was not meeting her milestones, growing like she should be, had eating problems, was tongue tied. In short, these developmental milestones were falling further and further behind. She was falling behind in both her developmental and physical milestones.
An early childhood development evaluation determined she needed early intervention and not just minor intervention. Once the evaluation was completed, she qualified for speech, feeding, physical, and occupational therapy. After about two years minimal progress had been made.
Around this age we had also been instructed to have an Autism screening done. By this point, she had already had other neurological screenings done to rule out more severe disabilities. Her doctors and therapists wanted to know why her growth was still very slow, she was not walking, babbling, not eating unless it came from a bottle,
I had friends with children with autism as well and we had talked and I knew she had to many of the signs to ignore, yet I felt if I worked with her more I could change her. Maybe I could love the autism out of her.
I think this is the dream of every parent of a child with a disability.
Finally, one day I realized I needed help and a diagnosis. One this day, both girls had been sitting at the table playing with playdough. All Jade would do was scream at her blob. Of course playdough will not respond to a screaming child. Well in her fit of rage she flopped off the chair, landing head first on the linoleum covered cement floor. She pulled herself up to the chair like nothing had happened. At this moment, her lack of reaction to pain told me something was not right. I broke down and made the appointment for the screening. By this point she was nearly three.
Because she was nearly three, the diagnoses was needed, for her to continue her therapies.
I thought I was prepared for the appointment. However, I learned I was far from emotionally prepared. Yes, I knew the facts. I knew the signs. I was not ready to hear, "your child has severe/profound autism."
During this appointment nearly 13 years ago, she could not keep eye contact, had no verbal skills, in fact the list of things she could not do was terrifying to me. The doctor diagnosing her, let me know that she would never walk flat footed, gain verbal skills, be able to attend regular school, function in society. In fact, we were told she would by the time she was a teen she would require the skills only in a specialized group home.
I left that appointment totally devastated. According to that doctor my child had no chance for any kind of a future.
We got Corbyn's platelet counts back today. YAY!! He is almost back to his baseline! This week he is sitting at 25k. He was thrilled to hear his counts today, because he can ride his bike again.
Yes, even at the lowest "healthy" number(250k) this is only 0.0001 of what he needs, but we'll gladly take this count.
Ellie has been doing better and we have been keeping this tube going still. However, we are still venting off and on. Monday I should be able to call and schedule a tube change.
Yes, even at the lowest "healthy" number(250k) this is only 0.0001 of what he needs, but we'll gladly take this count.
Ellie has been doing better and we have been keeping this tube going still. However, we are still venting off and on. Monday I should be able to call and schedule a tube change.
Tuesday, April 1, 2014
New Doctors for Jade...
Jade had a neurology appointment today for the dizzy and blacking out spells she has been having. The neurologist was very thorough with the questions and examination for her. He discovered her blood pressure and heart rate are different when she sitting, laying, and standing, and again after exercise.
The next step? Well before she returns in 6 weeks he wants her to follow the migraine diet carefully, be seen by one of the Mt Sinai Children's Cardiologist. He also wants her to be seen when possible by the local doctor specializing in hypermobility syndromes and connective tissue disorders.
He was totally amazed to learn that when Jade was 2 she was diagnosed with severe/profound autism and we had been told she would never talk or a number of things that normal children and young adults do. Additionally, when we told him we were told by this point in her life she would have to be confined to a group home, he said he wished doctors would stop giving dire predictions like that. Also he stated in all his years as a neurologist, she is the first child ever he has seen that was once diagnosed with a severe/profound diagnosis, no speech till nearly 5, then become high functioning.
The most frustrating part about these appointments right now is that we are supposed to be updating our EFMP (exceptional family member program) paperwork for the military. This paperwork is essential for the military because transfers are based off medical needs and the ability to meet the needs. For example with Corbyn and his ITP we have to have access to a hematologist that treats kids with platelet disorders.
Well, this is frustrating right now because the kids see one doctor then have to be checked out by another. With Jade, during her physical, it was discovered that she needed to be seen by an eye specialist and the neurologist. At least the eye specialist will be a simple follow up as needed. However, now cardio and bone/joint specialist as well... (sigh)
(and her dance teacher thought I was over reacting by letting her drop dance last year) After she dropped dance she did 6-8 months of 3xs a week of intense physical therapy...
The next step? Well before she returns in 6 weeks he wants her to follow the migraine diet carefully, be seen by one of the Mt Sinai Children's Cardiologist. He also wants her to be seen when possible by the local doctor specializing in hypermobility syndromes and connective tissue disorders.
He was totally amazed to learn that when Jade was 2 she was diagnosed with severe/profound autism and we had been told she would never talk or a number of things that normal children and young adults do. Additionally, when we told him we were told by this point in her life she would have to be confined to a group home, he said he wished doctors would stop giving dire predictions like that. Also he stated in all his years as a neurologist, she is the first child ever he has seen that was once diagnosed with a severe/profound diagnosis, no speech till nearly 5, then become high functioning.
The most frustrating part about these appointments right now is that we are supposed to be updating our EFMP (exceptional family member program) paperwork for the military. This paperwork is essential for the military because transfers are based off medical needs and the ability to meet the needs. For example with Corbyn and his ITP we have to have access to a hematologist that treats kids with platelet disorders.
Well, this is frustrating right now because the kids see one doctor then have to be checked out by another. With Jade, during her physical, it was discovered that she needed to be seen by an eye specialist and the neurologist. At least the eye specialist will be a simple follow up as needed. However, now cardio and bone/joint specialist as well... (sigh)
(and her dance teacher thought I was over reacting by letting her drop dance last year) After she dropped dance she did 6-8 months of 3xs a week of intense physical therapy...
Wednesday, March 26, 2014
Playing the Platelet Game Again...
Monday I was sitting in the ER with Ellie because of a partially clogged J-Tube. Today while Corbyn was in school I received a call from the JHCC hematology center letting me know that his platelets have continued to drop and he needed to be seen today.
So once again I dressed Ava (my service dog) for yet another trip, headed to the middle school to pull Corbyn for the rest of the school day. Once arrived at JHCC they had an order alrady placed so we went straight for labs then to see his Dr, yes has had his blood drawn twice today. During the initial exam he clearly has the beginning of petechiae again. What is frustrating is his 16K count normally does not cause rashes for him.
The game plan? Well we came home with a script for prednisone to hold onto until after his next blood draw on Wednesday before school. If he continues to drop we will start the prednisone again. Not only that we will at least keep in weekly phone contact with his hematologist team after each blood draw. During the phone calls we will then make the determination if he in need of starting treatments back up again. Additionally, his hematologist Dr and peds Dr will also keep in weekly contact. Between this team and Corbyn his hematologist is confident that we will keep on top of things.
The best part is that we do not have to drive in to Baltimore weekly for his blood draws right now! YES! I love his team too. Even if the call to bring him in today was not what I expected.
According to Corbyn the best part was that he got to school at almost 9 due to the blood work. Then after the call he was pulled out of school by 12:30. Had he not been at lunch he would have been pulled out around noon. Hehe, he loved his short day!
So once again I dressed Ava (my service dog) for yet another trip, headed to the middle school to pull Corbyn for the rest of the school day. Once arrived at JHCC they had an order alrady placed so we went straight for labs then to see his Dr, yes has had his blood drawn twice today. During the initial exam he clearly has the beginning of petechiae again. What is frustrating is his 16K count normally does not cause rashes for him.
The game plan? Well we came home with a script for prednisone to hold onto until after his next blood draw on Wednesday before school. If he continues to drop we will start the prednisone again. Not only that we will at least keep in weekly phone contact with his hematologist team after each blood draw. During the phone calls we will then make the determination if he in need of starting treatments back up again. Additionally, his hematologist Dr and peds Dr will also keep in weekly contact. Between this team and Corbyn his hematologist is confident that we will keep on top of things.
The best part is that we do not have to drive in to Baltimore weekly for his blood draws right now! YES! I love his team too. Even if the call to bring him in today was not what I expected.
According to Corbyn the best part was that he got to school at almost 9 due to the blood work. Then after the call he was pulled out of school by 12:30. Had he not been at lunch he would have been pulled out around noon. Hehe, he loved his short day!
Friday, March 21, 2014
Well today has been a long and interesting day to say the least. This morning started off with a trip to the peds office for the ordered blood work for Corbyn and Jairon. Ellie tagged along with us in her favorite footed pj's and winter boots. Once the boys were done, we dropped Zach off at school for his monthly book club.
He has LOVED reading and listening to the audio book of the Grave Robber's Apprentice. With Zach dropped off I made sure that Corbyn and Jairon took their note with them as they entered the middle school. As we were almost home Ellie let me know that Zach had left his note in the car. Not wanting to go through the gate on base, return to the elementary school, then go through the busy gate again, we decided to just go home.
Ellie had her down day as this has been her clean out day (GI families know all about this...) so she had lots of movies and extra computer play time. (Thank goodness things are starting to move through...finally, after 2 days)
Lunch was over and I needed to pick Zach up from the school as kids were arriving and high schoolers too. Well I dropped Frank off at work and got a call from the school that the elementary kids had been released nearly an hour ago??? Well for over a year now my calendar has had the wrong release time (sigh). Good thing I was already on my way to grab him.
During the drive over I got a call from the peds clinic letting me know that Corbyn's platelets have dropped again. He had been maintaining around 30K-35K. Yes that is 30,000 to 35,000 for his count. For him that had been a great count. Normal counts are anything over 250,000, but preferably closer to 400,000. Today his counts are now down to 18k. While that is not much of a drop, it has been enough for him to have more than normal bleeding in his ears and along his gums. He has also been bruising easier.
We arrived at John Hopkins for Zach's ortho appt, and he does hyper-mobility syndrome. He also has several tendons and ligaments that are tighter than normal. This could be due to his tendons not stretching normally as he has grown, or an indication of something else.
For now he is to start taking motrin three times a day and start physical therapy to see if that will help. On the way home Corbyn's hematologist called to talk with us about his counts and determine if an ER trip is needed. When I arrived home Frank and I got a good look at him and it looks like he may have petechial rashing again. UGH Really? We are now back to weekly blood draws. Thank goodness this child has no fear of blood or needles.
So now, with Ellie we need to get her GI system feeling and working better. With Corbyn, we have to watch for the petechial rash, bleeding, headaches, abnormal sleepiness oh and increases in bruising. Not to mention if he falls and bumps his head at all, we are to get him in to the ER ASAP, and call the on call heme team once we have left to let them know.
He has LOVED reading and listening to the audio book of the Grave Robber's Apprentice. With Zach dropped off I made sure that Corbyn and Jairon took their note with them as they entered the middle school. As we were almost home Ellie let me know that Zach had left his note in the car. Not wanting to go through the gate on base, return to the elementary school, then go through the busy gate again, we decided to just go home.
Ellie had her down day as this has been her clean out day (GI families know all about this...) so she had lots of movies and extra computer play time. (Thank goodness things are starting to move through...finally, after 2 days)
Lunch was over and I needed to pick Zach up from the school as kids were arriving and high schoolers too. Well I dropped Frank off at work and got a call from the school that the elementary kids had been released nearly an hour ago??? Well for over a year now my calendar has had the wrong release time (sigh). Good thing I was already on my way to grab him.
During the drive over I got a call from the peds clinic letting me know that Corbyn's platelets have dropped again. He had been maintaining around 30K-35K. Yes that is 30,000 to 35,000 for his count. For him that had been a great count. Normal counts are anything over 250,000, but preferably closer to 400,000. Today his counts are now down to 18k. While that is not much of a drop, it has been enough for him to have more than normal bleeding in his ears and along his gums. He has also been bruising easier.
We arrived at John Hopkins for Zach's ortho appt, and he does hyper-mobility syndrome. He also has several tendons and ligaments that are tighter than normal. This could be due to his tendons not stretching normally as he has grown, or an indication of something else.
For now he is to start taking motrin three times a day and start physical therapy to see if that will help. On the way home Corbyn's hematologist called to talk with us about his counts and determine if an ER trip is needed. When I arrived home Frank and I got a good look at him and it looks like he may have petechial rashing again. UGH Really? We are now back to weekly blood draws. Thank goodness this child has no fear of blood or needles.
So now, with Ellie we need to get her GI system feeling and working better. With Corbyn, we have to watch for the petechial rash, bleeding, headaches, abnormal sleepiness oh and increases in bruising. Not to mention if he falls and bumps his head at all, we are to get him in to the ER ASAP, and call the on call heme team once we have left to let them know.
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