I am so sad. I love Jack so incredibly much. To learn, to try to accept that Jack has a lifelong disability.... I am devastated and in an indescribable state of pain and grief.
Autism is believed to be an autoimmunde disorder that prevents the brain from working properly.
Friday, June 1, 2012
Saturday, May 26, 2012
Why did this happen?
I may never get the answers I want in regards to "Why? Why did this happen to Jack?"
I do know some things:
First: I had a healthy, full-term pregnancy. I followed all the recommended advice for pregnant women. Paul and I were healthy parents.
Second: Jack was born - beautiful, strong and healthy. I do not believe Jack was born with autism.
Third: Jack was developing normaly, on schedule.... and then something happened. Something went wrong?
What?
I asked my doctors about vaccines. I asked even while I was pregnant. I was poo-pooed. Told it was nothing to worry about.
I wish I wouldn't have given Jack the vaccines. Maybe people don't like to hear that. But its true. Knowing what I know now... Understanding my family history, Paul's family history... I think I should have received better counseling from the medical community. Yes - Jack's family has a history of immunity and neuoroligical disorders. I think Jack could have had a predisposition... and once so many super strong vaccines hit his body before the age of 2.... Jack's health history took a turn. I love my child so much - I would have done anything to have prevented this.
I wish I would have been counseled and would have known more about alternative vaccination schedules.
I'm not the only one who thinks this. Read the below thoughtful comments from Jenny McCarthy:
http://articles.cnn.com/2008-04-02/us/mccarthy.autsimtreatment_1_autism-evan-hannah-poling?_s=PM:US
Many people aren't aware that in the 1980s our children received only 10 vaccines by age 5, whereas today they are given 36 immunizations, most of them by age 2. With billions of pharmaceutical dollars, could it be possible that the vaccine program is becoming more of a profit engine then a means of prevention?
We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role. If we are going to solve this problem and finally start to reverse the rate of autism, we need to consider changing the vaccine schedule, reducing the number of shots given and removing certain ingredients that could be toxic to some children.
We take into account that some children have reactions to medicines like penicillin, for example, yet when it comes to vaccines we are operating as if our kids have a universal tolerance for them. We are acting like ONE SIZE FITS ALL. That is, at the very least, a huge improbability.
Even if the CDC is not convinced of a link between vaccines and autism, changing the vaccine schedule should be seriously considered as a precautionary measure. (If you would like to see some ideas for alternative schedules, check out http://generationrescue.org.)
We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!
I do know some things:
First: I had a healthy, full-term pregnancy. I followed all the recommended advice for pregnant women. Paul and I were healthy parents.
Second: Jack was born - beautiful, strong and healthy. I do not believe Jack was born with autism.
Third: Jack was developing normaly, on schedule.... and then something happened. Something went wrong?
What?
I asked my doctors about vaccines. I asked even while I was pregnant. I was poo-pooed. Told it was nothing to worry about.
I wish I wouldn't have given Jack the vaccines. Maybe people don't like to hear that. But its true. Knowing what I know now... Understanding my family history, Paul's family history... I think I should have received better counseling from the medical community. Yes - Jack's family has a history of immunity and neuoroligical disorders. I think Jack could have had a predisposition... and once so many super strong vaccines hit his body before the age of 2.... Jack's health history took a turn. I love my child so much - I would have done anything to have prevented this.
I wish I would have been counseled and would have known more about alternative vaccination schedules.
I'm not the only one who thinks this. Read the below thoughtful comments from Jenny McCarthy:
http://articles.cnn.com/2008-04-02/us/mccarthy.autsimtreatment_1_autism-evan-hannah-poling?_s=PM:US
Many people aren't aware that in the 1980s our children received only 10 vaccines by age 5, whereas today they are given 36 immunizations, most of them by age 2. With billions of pharmaceutical dollars, could it be possible that the vaccine program is becoming more of a profit engine then a means of prevention?
We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role. If we are going to solve this problem and finally start to reverse the rate of autism, we need to consider changing the vaccine schedule, reducing the number of shots given and removing certain ingredients that could be toxic to some children.
We take into account that some children have reactions to medicines like penicillin, for example, yet when it comes to vaccines we are operating as if our kids have a universal tolerance for them. We are acting like ONE SIZE FITS ALL. That is, at the very least, a huge improbability.
Even if the CDC is not convinced of a link between vaccines and autism, changing the vaccine schedule should be seriously considered as a precautionary measure. (If you would like to see some ideas for alternative schedules, check out http://generationrescue.org.)
We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!
Autism Service Dog
While I am excited to get Jack into an intensive autism program - I am also kind of sad because this is not the childhood I had imagined for him. Its going to be hard for Jack. I hope and believe it will be worth it. I sure am going to miss him though. The idea is that Jack will be going to a center for 40 hours a week and it will be quite a commute for him.
I've been reading about autism service dogs and the benefits they bring not only for the autistic child but also for the whole family. I'm thinking that it is going to be a HUGE deal when Jack graduates from his ABA program - hopefully in about 3 years or so. I am thinking that when Jack graduates - a canine service dog may be the best graduation present for him. I am going to
do this for Jack when he turns 5/graduates from ABA. Sounds like a great thing
for him and our whole family.
Siblings
When a child with autism has a Service Dog, this fact can not only mean less work for the parents, it can mean less work for the siblings. Siblings of an autistic child often become what psychologists refer to as "The Little Parent", behaving more like a care-giver than a child. When the autistic child has a Service Dog, though, their siblings feel less pressure to constantly interact and take care of their disabled sibling.
There are several services that a trained Autism Service Dog can provide:
When a child with autism has a Service Dog, this fact can not only mean less work for the parents, it can mean less work for the siblings. Siblings of an autistic child often become what psychologists refer to as "The Little Parent", behaving more like a care-giver than a child. When the autistic child has a Service Dog, though, their siblings feel less pressure to constantly interact and take care of their disabled sibling.
There are several services that a trained Autism Service Dog can provide:
- The Service Dog can be a "safety dog", which is
helpful if the person with autism often runs off. The child is tethered to the
dog and the dog becomes a protector of sorts for the child.
- Sometimes this task is more oriented towards finding the child when they run off, in which case the Service Dog is usually referred to as "Search and Rescue". See our page onpreventing wandering off.
- These dogs also serve as a “social ice breaker”
because other people are often attracted to a dog and will interact more readily
with the person. These additional avenues for social interaction acceptance can
be extremely meaningful. For autistic children, often social challenges are one
of the worst symptoms, and the dog creates a social conduit for interacting with
others.
- Additionally, often children with autism are themselves much more comfortable interactive when they're around the dog.
- Alerting toseizures.
- The Service Dog can interrupt the behavior of:
- PICA (impulsive eating of non-food items)
- Self-stimulation, such as slapping the face
- Self-harming
- Helping with refusal to speak:
- The dog maintains eye contact when child tries to speak
- The dog responds to verbal commands
- Adults and other children may engage with the the child by paying attention to the dog (also helps with social skills)
- An Autism Service Dog can also assist with emotional, behavioral and sensory challenges, and be with the person 24 hours a day. The dog facilitates sensory integration and calming, helping make melt-downs more manageable (many families cannot easily manage public outings without this method of calming the child). See our pages onpromoting empathy,the Service Dog as educational tool,the therapeutic effects of an Autism Service Dog , andextra benefits.
Wednesday, May 23, 2012
How am I doing?
People ask me "How are you doing?" I'm never too sure if they really want to know the answer to their question. In part - that's why I created this blog. So that you could see a snippet, a sliver of how I am doing and what is going on. I also created this blog to share an awareness of Jack's journey and too hopefully create some education on autism.
How am I doing?
I guess I am doing okay - for a mother who has just received the devastating news that her son has a neruological disorder called autism. I'm not "okay", it is an "okay - with a HUGE qualifier". What does that qualifier mean? It means that I am sad, scared, feeling guilty, anxious, nervous - I pretty much feel every single emotion all the time. I'm worried. I'm really worried about Jack. I'm worried about my family.
What do I know for sure?
I know for sure that I love Jack so very much. I love him completely and utterly. I am thankful for Jack.
I am sad. I am sad that Jack has had a hard life. He has had sickness - croup, pneuomonia, chicken pox, ear infections, flu, diarrhea, etc. But even more than the physical sickness - Jack has been unhappy. I am sad that everything will be harder for Jack. Learning language will be extremely difficult for Jack, it will be a struggle. Learning social skills and expectations will be harder for Jack. Learning gross motor skills and fine motor skills will be harder for Jack. Learning to eat healthy will be harder for Jack. Autism impacts the whole person - so pretty much everything will be harder for Jack. That makes me sad. Its very hard to watch and to know that your child is struggling every day.
I am scared. I'm pretty much scared of this world. One thing scares me more than anything. Time. Time. Time. I am 33, Jack is 2.5 (today!). I am scared to think about the future
How am I doing?
I guess I am doing okay - for a mother who has just received the devastating news that her son has a neruological disorder called autism. I'm not "okay", it is an "okay - with a HUGE qualifier". What does that qualifier mean? It means that I am sad, scared, feeling guilty, anxious, nervous - I pretty much feel every single emotion all the time. I'm worried. I'm really worried about Jack. I'm worried about my family.
What do I know for sure?
I know for sure that I love Jack so very much. I love him completely and utterly. I am thankful for Jack.
I am sad. I am sad that Jack has had a hard life. He has had sickness - croup, pneuomonia, chicken pox, ear infections, flu, diarrhea, etc. But even more than the physical sickness - Jack has been unhappy. I am sad that everything will be harder for Jack. Learning language will be extremely difficult for Jack, it will be a struggle. Learning social skills and expectations will be harder for Jack. Learning gross motor skills and fine motor skills will be harder for Jack. Learning to eat healthy will be harder for Jack. Autism impacts the whole person - so pretty much everything will be harder for Jack. That makes me sad. Its very hard to watch and to know that your child is struggling every day.
I am scared. I'm pretty much scared of this world. One thing scares me more than anything. Time. Time. Time. I am 33, Jack is 2.5 (today!). I am scared to think about the future
Tuesday, May 22, 2012
May 22, 2012
Today was another big deal day. So many days have felt like "big deals" lately. But today was special. Today we received the evaluation from the school district. Today was a big deal to me because it was the suggestion from Jack's preschool director to reach out to the school district that opened my eyes to the medical/neurological crisis my son has been in. That was 41 days ago - April 12th. I am forever grateful to the director from Jack's school for reaching out to me in a compassionate, caring manner and for helping me to help my son.
The school evaluation was 17 pages long - single spaced. I haven't read it yet. I've skimmed some parts. Similar to the medical diagnosis (14 pages long - single spaced) - I know the information, I know the test results are bad. I guess it was new to learn what percentiles Jack would be in compared to typically developing peers. Sometimes Jack was in the bottom 1%. Sometimes it was the bottom 6% or bottom 7%. It is hard news to hear.
It was also hard to hear that Jack also has gross motor development needs. Gross motor is an area of strength for Jack - but he is still behind his typically developing peers - just not as far behind as he is in other areas. I know this was especially difficult for Paul to hear. And its been on his mind all day today. Paul is a good father and I know that Paul is really trying to be there for his family, for Jack and that Paul is trying more than ever.
What can we do for the gross motor? Our goal is to spend time outside, at gyms, Pump It Up, Sky Zone, whatever. We need to expose Jack to new activities and always work on gross motor skills. I'll plan on keep bringing Jack to Nora's soccer - those are great opportunities for us to play at the playground and meet other children. And I am SOOOOOOOOOOOOOOO excited to begin swim this Thursday. Hooray!
So I haven't read the medical reports or school reports - but I have been the one who has provided the majority of the content for the reports and I have sat through all the report-outs. At this time - I'm still not comfortable sharing the reports. But I will share this little snippet from the school report:
Jack's Skills/Behaviors
STRENGTHS:
- Supportive family
- Enjoys gross motor movement of his choice
- Functional mobility; able to access items in his environement
- Emerging verbal imitation sklls
- Uses nonverbal strategies to communciate wants and needs with emerging use of single words
- Enjoys social interactions that are of interests to him
NEEDS
- Increase gross motor skills, including imitation
- Increae ability to participate in adult directed activities
- Increase ability to find named objects and complete 1 and 2 step activities
- Increase functional expressive vocabulary to communicate his wants and needs
- Increase use of functional expressive vocabular in response to others
- Increase his coping skills
The school evaluation was 17 pages long - single spaced. I haven't read it yet. I've skimmed some parts. Similar to the medical diagnosis (14 pages long - single spaced) - I know the information, I know the test results are bad. I guess it was new to learn what percentiles Jack would be in compared to typically developing peers. Sometimes Jack was in the bottom 1%. Sometimes it was the bottom 6% or bottom 7%. It is hard news to hear.
It was also hard to hear that Jack also has gross motor development needs. Gross motor is an area of strength for Jack - but he is still behind his typically developing peers - just not as far behind as he is in other areas. I know this was especially difficult for Paul to hear. And its been on his mind all day today. Paul is a good father and I know that Paul is really trying to be there for his family, for Jack and that Paul is trying more than ever.
What can we do for the gross motor? Our goal is to spend time outside, at gyms, Pump It Up, Sky Zone, whatever. We need to expose Jack to new activities and always work on gross motor skills. I'll plan on keep bringing Jack to Nora's soccer - those are great opportunities for us to play at the playground and meet other children. And I am SOOOOOOOOOOOOOOO excited to begin swim this Thursday. Hooray!
So I haven't read the medical reports or school reports - but I have been the one who has provided the majority of the content for the reports and I have sat through all the report-outs. At this time - I'm still not comfortable sharing the reports. But I will share this little snippet from the school report:
Jack's Skills/Behaviors
STRENGTHS:
- Supportive family
- Enjoys gross motor movement of his choice
- Functional mobility; able to access items in his environement
- Emerging verbal imitation sklls
- Uses nonverbal strategies to communciate wants and needs with emerging use of single words
- Enjoys social interactions that are of interests to him
NEEDS
- Increase gross motor skills, including imitation
- Increae ability to participate in adult directed activities
- Increase ability to find named objects and complete 1 and 2 step activities
- Increase functional expressive vocabulary to communicate his wants and needs
- Increase use of functional expressive vocabular in response to others
- Increase his coping skills
Sunday, May 20, 2012
May 20, 2012
We went to an ECSE (Early Childhood Special Education) Family Night Out at the Maple Grove Community Center. I consider the night out a success. Jack and Nora had fun.. and Paul came... met teachers and other parents who were very informative, educated, and compassionate about autism. Paul got to see... like I did at the Pump It Up Sensory Night.... that these are really good events for our family. An outsider walking probably wouldn't even know that these are special needs kids. And I guess that's the thing... you've got to know the kids... to know the needs... to make the difference.
We continue to learn more and more about autism. I'll write more about some quick ways to explain autism later. i am quite tired at the moment.
One cool thing I learned tonight... is that Jack gets to go free to Sky Zone any time. How awesome is that? So if you're in the area.. and want to do something with Jack... Sky Zone is a fun option. Jack excells at places like Pump It Up and Sky Zone. They are places where his strengths shine. It feels good to find things that Jack likes - and that he can enjoy doing with others.
I need to write that today was a good day for Jack. We kept busy. We listened to music, visited Sally and Tim's, got to see Jane, John and Jordan, played with dogs, played in the rain, wore rain boots (andy kind of boots for the first time), toured the RV (honked the horn in the RV - twice), went to Family Night Out, grocery shopped at cub. And Jack ate peanuts (first time ever) and took an apple - put it to his mouth and tried to take a bite. Jack ultimately decided he didn't want to eat the apple.... but just touching the apple - let alone bringing the apple to his mouth - was HUGE!
Many thanks to Aunt Jane for sharing information about seizures with me today. I have some questions out to our doctor tonight and am awaiting more information. There have been two specific occassions where Paul and I wonder if Jack may have had a petit mal seizure. Once when Jack had the chicken pox and Jack exhibited a strange staring spell (we went to Children's that night)... and another time when I got a call from his daycare (back in spring 2011) saying that Jack's lips had briefly turned blue and that he had shook all over, but when I picked up Jack he was content and showed no signs of anything wrong... I had called the nurseline - but they advised me to just continue to closely observe Jack.....
We continue to learn more and more about autism. I'll write more about some quick ways to explain autism later. i am quite tired at the moment.
One cool thing I learned tonight... is that Jack gets to go free to Sky Zone any time. How awesome is that? So if you're in the area.. and want to do something with Jack... Sky Zone is a fun option. Jack excells at places like Pump It Up and Sky Zone. They are places where his strengths shine. It feels good to find things that Jack likes - and that he can enjoy doing with others.
I need to write that today was a good day for Jack. We kept busy. We listened to music, visited Sally and Tim's, got to see Jane, John and Jordan, played with dogs, played in the rain, wore rain boots (andy kind of boots for the first time), toured the RV (honked the horn in the RV - twice), went to Family Night Out, grocery shopped at cub. And Jack ate peanuts (first time ever) and took an apple - put it to his mouth and tried to take a bite. Jack ultimately decided he didn't want to eat the apple.... but just touching the apple - let alone bringing the apple to his mouth - was HUGE!
Many thanks to Aunt Jane for sharing information about seizures with me today. I have some questions out to our doctor tonight and am awaiting more information. There have been two specific occassions where Paul and I wonder if Jack may have had a petit mal seizure. Once when Jack had the chicken pox and Jack exhibited a strange staring spell (we went to Children's that night)... and another time when I got a call from his daycare (back in spring 2011) saying that Jack's lips had briefly turned blue and that he had shook all over, but when I picked up Jack he was content and showed no signs of anything wrong... I had called the nurseline - but they advised me to just continue to closely observe Jack.....
Thursday, May 17, 2012
May 17, 2012
Tonight we had what I hope to be Jack's last formal evaluation... although I know evaluations will continue to take place as we start to identify Jack's program of care. Next Tuesday a team of 6 from the school district will come to our house to deliver the formal report from the school district. I know it will be long. The meeting starts promptly at 8am. I haven't figured out the kids schedule for that morning. I'll think about it more tomorrow.
We received the formal written medical diagnosis yesterday. It was 14 pages long - single spaced, mostly narrative, along with many, many results from the various standardized tests either Paul and I have completed via questionnaires or from the medical observations conducted on Jack. I started to read the diagnosis - but it was too painful to read. I began to browse the report and ultimately decided to stop reading. I knew the content, I knew the story... it had been my life for the past 18 months. I decided now was not the time to relive it.
Jack and I went to Trader Joe's tonight. I'd consider our trip out a success. No meltdowns. Tomorrow I'll be starting a scientific log to track Jack's activities, behaviors and patterns. I'll be tracking the basics like sleep, food, etc. But also others like - how hard was it to get dressed - and maybe most importantly - his ABCs - Antecedent, Behavior, Consequence. The goal is to scientifically identify repeated behaviors that we want to correct. 2 weeks from today we will go to the GFCF diet. I'm starting to work with Jack to identify some favorite GFCF foods to help ease the upcoming transition.
We received the formal written medical diagnosis yesterday. It was 14 pages long - single spaced, mostly narrative, along with many, many results from the various standardized tests either Paul and I have completed via questionnaires or from the medical observations conducted on Jack. I started to read the diagnosis - but it was too painful to read. I began to browse the report and ultimately decided to stop reading. I knew the content, I knew the story... it had been my life for the past 18 months. I decided now was not the time to relive it.
Jack and I went to Trader Joe's tonight. I'd consider our trip out a success. No meltdowns. Tomorrow I'll be starting a scientific log to track Jack's activities, behaviors and patterns. I'll be tracking the basics like sleep, food, etc. But also others like - how hard was it to get dressed - and maybe most importantly - his ABCs - Antecedent, Behavior, Consequence. The goal is to scientifically identify repeated behaviors that we want to correct. 2 weeks from today we will go to the GFCF diet. I'm starting to work with Jack to identify some favorite GFCF foods to help ease the upcoming transition.
Tuesday, May 15, 2012
May 14, 2012
I took Jack and Nora to Sensory Night at Pump It Up. Paul didn't go. I think maybe he was intimidated by what he may see there. I think he'll go next time - because I told him it was a success. There weren't that many families there - compared to a usual free time or family night at Pump It Up. Nora, Jack and I had a great time. It was a fun night and good exercise for all of us.
Just got some books:
Let Me Hear Your Voice: A Family's Triumph Over Autism "A universal tale of hope, dogged parental love, hard work and ultimate triumph."
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life "A State-of-the-Art Approach to Reducing the Symptoms of Autism Spectrum Disorders"
I apologize to anyone who reads this blog and finds my entries offensive or reads them and thinks that I am feeling sorry for myself. I wrote this blog to try to understand our own story, to better understand Jack. I wrote this blog - to answer the question that I am so often asked - "How are you doing?" Its not a question I can answer in a few words. I realize that most people just want to hear "Good." Some moments feel okay, some moments feel good, and some feel bad, scary and ugly. I think that's natural. Please build me up, don't cut me down.
I also want to clarify that Paul and I are united. We are lucky that we are united - many parents are not. We also know that the rate of divorce for parents of autistic children is very high. I ask that everyone support us together and to not say or spread thoughts that could tear us apart.
If you don't like this blog - simply don't read it. But I urge you to read the two books above - especially, Let Me Hear Your Voice.
You would fight cancer with an intensity. You would lose a breast or two, put strong chemicals in your body to kill the dangerous cancerous cells. You wouldn't sit back and see what route the cancer might take in your body. You wouldn't wait for 6 months or 9 months and not treat the cancer. Autism is very different than cancer... but in some ways it is similar. Autism is very different in Alzheimers... but in some ways it is very similar. Autism is a neurological disorder - and you don't want it to keep progressing - you don't want your child to remain mentally at the level of a 1 year old. You fight it - just like you would fight cancer - just like you would take medicine and fight off the progression of Alzheimers. I am fighting for Jack. I ask people to advocate for Jack, advocate for our family, be an advocate for this fight.
Jack was developing normally... and then something went very wrong.... something is going wrong in his brain. In some areas - he is only at 11 month development. I don't think it is unnatural for Paul and I too feel such strong emotions after learning his medical diagnosis not even one week ago. I called Lifeworks this weekend. And the person on the phone was so kind. She showed empathy for me... and I appreciated it.
The saying is "If you've met one child with autism, then you've just met one child." Autism is so different from child to child. That's why it is such a scary diagnosis. You don't know the path your child's brain is following - you do know that you want to help retrigger and redirect those paths. There are therapies to help with that. You do know that you have a short window of time before those paths become permanently set. You take advantage of that window with a dogged persistent and intensity. You advocate for your child. I believe this is the good fight. Please join Paul and I.
Sunday, May 13, 2012
Mother's Day Apology
It is Mother's Day. There is one mother I want to call. It is Mother's Day - and I think she will empathize and understand. I called Sylvia tonight and apologized. I can't remember what I said to her the evening I received Jack's diagnosis - but I know I was wrong. I remember it was a painful night. I truly think I must have had a nervous breakdown. I apologize and tell her how much I love my son and my daughter. How much I want my family. I apologize for my words and actions. I am honest - I tell her that I am in an indescribable pain - I am praying for God to take away this grief. She accepts my apologies and is kind to me. She listens to my story and to my feelings and she doesn't tell me to feel otherwise. She tells me to get some sleep.. that sleep will help me to be stronger. And she is right - so goodnight.
Rewards
We want to try ABA therapy with Jack. It is a way to teach "good" behaviors using a "fun" reward system. So I am trying to find healthy rewards. An easy reward would be tv - but its not healthy, and its not practical.
Nora is very good at finding rewards for Jack. Bubbles are a great reward. Fun for both Nora and Jack. Relatively inexpensive. Nora also used a fun little cupcake toy as a reward.
Nora and Paul are home. Time for pizza.
Nora is very good at finding rewards for Jack. Bubbles are a great reward. Fun for both Nora and Jack. Relatively inexpensive. Nora also used a fun little cupcake toy as a reward.
Nora and Paul are home. Time for pizza.
May 13, 2012
Its 6:45pm. I just got Jack to sit down to eat dinner. I wish we were all organized to eat as a family - but we aren't. I don't have food in the freezer, I don't have meals made. We are ordering pizza - again.
I am looking at photos.. Jack eating baby food, Jack eating blueberries, Jack eating watermelon. Now Jack hardly eats anything. What happened? When did it happen? Why? I can't focus on those questions now. I need to get help.
Jack was upset when he woke up from his nap today. He is always upset when he wakes up from his naps. I have to figure out to help him transition from being asleep to being awake.
Jack is eating raisins, chicken nuggets, and a gluten-free waffle. I am pretty sure Jack is allergic to milk. Now Jack drinks almond milk and coconut milk. I am making the change for myself as well. When we went back to cow's milk... Jack's bottom got terrible rashes and a rash appeared over his stomach. Now we are going back to almond milk... and cocunt milk. I am still experimenting with flavors, calories of the milk.
I need to write an important email to Dr. R right now. I am trying to get Jack help as quickly as possible. Its not easy to do. We have hard choices to make. We are gambling with our limited resources, with our child's life.
I am looking at photos.. Jack eating baby food, Jack eating blueberries, Jack eating watermelon. Now Jack hardly eats anything. What happened? When did it happen? Why? I can't focus on those questions now. I need to get help.
Jack was upset when he woke up from his nap today. He is always upset when he wakes up from his naps. I have to figure out to help him transition from being asleep to being awake.
Jack is eating raisins, chicken nuggets, and a gluten-free waffle. I am pretty sure Jack is allergic to milk. Now Jack drinks almond milk and coconut milk. I am making the change for myself as well. When we went back to cow's milk... Jack's bottom got terrible rashes and a rash appeared over his stomach. Now we are going back to almond milk... and cocunt milk. I am still experimenting with flavors, calories of the milk.
I need to write an important email to Dr. R right now. I am trying to get Jack help as quickly as possible. Its not easy to do. We have hard choices to make. We are gambling with our limited resources, with our child's life.
Saturday, May 12, 2012
May 12, 2012
Cut Jack's hair today. It was so long and crazy looking. It took a long time too get it done. The hardest thing was getting him comfortable that the scissors wouldn't hurt him. Wish I knew what I was doing. I really want him to look his best. I think it looks okay. Thankfully he has a curl to his hair - so as it grows out a bit - it will forgive my poor barber job.
Paul got Jack down for a nap today. It was hard to do... but Jack did fall asleep... Paul felt something about the lights were bothering Jack. Jack fell asleep in Paul's arms. This really is not ideal. We want Jack to fall asleep by himself. So we need to keep working on that. Jack slept for 2 hours. When he woke up he was hungry... he ate chicken nuggets, a sweet potatoe cupcake, and my newest creation - a peanut-butter, carrot puree, banana and chocolate chip muffin (using almond flour!).
The kids and I had a good afternoon. Nora and I set up a little baby and animal hospital in the front green room. Jack even played with us. I will leave the front room with our baby and stuffed animal toys. Hopefully we can practice our pretend play everyday.
Nora is struggling... acting out. I want to help her. We are all stressed. We need help. We have all been pushed beyond our limits. There is still much to do. Every moment counts. I wish I had the right books for Jack, the right tools.... I wish we had the insurance, the funding. We are working on it... but we feel desperate... doors close everywhere. We are thinking of trying to fund 20 hours/week of the school ourselves. It would be expensive --- but it might make a huge difference in Jack's life. It could be THE difference.
We went to the park tonight. Jack and Nora had fun. Jack fell hard - skinned his knee. He didn't cry.
I'm going to work on a special log to track Jack's sleep patterns, eating, and his ABCs (antecedent, behavior, consequence). That information should help me focus on where Jack needs help. Its a start.
Paul got Jack down for a nap today. It was hard to do... but Jack did fall asleep... Paul felt something about the lights were bothering Jack. Jack fell asleep in Paul's arms. This really is not ideal. We want Jack to fall asleep by himself. So we need to keep working on that. Jack slept for 2 hours. When he woke up he was hungry... he ate chicken nuggets, a sweet potatoe cupcake, and my newest creation - a peanut-butter, carrot puree, banana and chocolate chip muffin (using almond flour!).
The kids and I had a good afternoon. Nora and I set up a little baby and animal hospital in the front green room. Jack even played with us. I will leave the front room with our baby and stuffed animal toys. Hopefully we can practice our pretend play everyday.
Nora is struggling... acting out. I want to help her. We are all stressed. We need help. We have all been pushed beyond our limits. There is still much to do. Every moment counts. I wish I had the right books for Jack, the right tools.... I wish we had the insurance, the funding. We are working on it... but we feel desperate... doors close everywhere. We are thinking of trying to fund 20 hours/week of the school ourselves. It would be expensive --- but it might make a huge difference in Jack's life. It could be THE difference.
We went to the park tonight. Jack and Nora had fun. Jack fell hard - skinned his knee. He didn't cry.
I'm going to work on a special log to track Jack's sleep patterns, eating, and his ABCs (antecedent, behavior, consequence). That information should help me focus on where Jack needs help. Its a start.
Friday, May 11, 2012
May 11, 2012 - Antecedent
5:40 pm - Jack has recently woken from a nap. He had a busy day. He missed his regular nap because we toured Autism Matters. We got home around 3:30 and Jack took a nap then. when he woke up - it seemed like things would be a struggle. We wanted to eat dinner because Nora had tickets to Pippi Longstocking at Children's Theater. I made dinner. Set out a special dinner for Jack. He wasn't happy he wanted to watch tv (I think).
I bring Jack to the table, he screams and cries. I am not sure what to do. I don't want to turn the tv on and give into his behvior. Jack's screams and cries become worse.I am not sure what to do. Maybe he wants to sit on my lap? I want Jack to eat dinner, to learn his social graces... I don't want him to be so dependent on me. He is crying, at my side, begging me for help. I don't understand him. I don't want to reinforce bad behavior. It is so hard. Our mealtime is terrible. It has been 20 minutes. Paul takes Jack upstairs. Jack becomes more frantic. What am I supposed to do? Am I supposed to comfort my child or ignore him? The tantrum lasts 25 minutes. Finally I take Jack from Paul. I rock him in his room, using the rocking chair and a weighted blanket and we listen to comforting music. Jack is quiet. The tantrum is over. I can sense he is scared. I am scared. What calmed Jack? Was it me? Am I the only one who can help Jack? I want so desperately for him to be independent. What am I supposed to be doing? I am haunted. There is no peace.
Paul takes Nora to Children's Theater. I write, I write this blog. It gives me peace. I will need to read my story... I will have to track Jack's food, his sleep, his behavior, his tantrusm, his progress, his regression...
I will use this blog to learn about Jack... and maybe to learn about myself. Jack needs help, Nora will need help, Paul and I need help. There is much to do.
I bring Jack to the table, he screams and cries. I am not sure what to do. I don't want to turn the tv on and give into his behvior. Jack's screams and cries become worse.I am not sure what to do. Maybe he wants to sit on my lap? I want Jack to eat dinner, to learn his social graces... I don't want him to be so dependent on me. He is crying, at my side, begging me for help. I don't understand him. I don't want to reinforce bad behavior. It is so hard. Our mealtime is terrible. It has been 20 minutes. Paul takes Jack upstairs. Jack becomes more frantic. What am I supposed to do? Am I supposed to comfort my child or ignore him? The tantrum lasts 25 minutes. Finally I take Jack from Paul. I rock him in his room, using the rocking chair and a weighted blanket and we listen to comforting music. Jack is quiet. The tantrum is over. I can sense he is scared. I am scared. What calmed Jack? Was it me? Am I the only one who can help Jack? I want so desperately for him to be independent. What am I supposed to be doing? I am haunted. There is no peace.
Paul takes Nora to Children's Theater. I write, I write this blog. It gives me peace. I will need to read my story... I will have to track Jack's food, his sleep, his behavior, his tantrusm, his progress, his regression...
I will use this blog to learn about Jack... and maybe to learn about myself. Jack needs help, Nora will need help, Paul and I need help. There is much to do.
Day 3 - May 11, 2012
7:45am - I am so tired. It is Mother's Day mass at school - it is hosted by Kindergarten. I am so tired. I do not want to go to school. I do want to go to mass. I need a break. Paul had left Saturday at 7am and just got back Thursday night. I am tired. I have been through so much. I can't keep going. Everyone is upset. There is fighting. There is crying. There is screaming. I am tired. I am exhausted. I care so much and I don't care at all. I wish Nora did not have to see this. I do not want her to see this. I want to make it up. I want this nightmare to stop.
I have no choice. Nora and I drive to school. I try to explain to her how tired I am, how much I want to be with her, how much i love her and I try to explain the but, the huge BUT... I am so very tired, I have been pushed beyond my limits, my strength is being tested... She is so kind and sweet. I love her. I wish I was stronger. I get over the moment... and I am strong... and then... just as quickly... I can't breathe... tears - huge tears - drop down my cheeks. I hide behind my sunglasses. I put my hand behind me and hold hers. I want to be strong, I want to be strong... but I am weak and need to get stronger....
8:30am - I drop Nora off. I come into school. I used to love coming here. How many happy times had I spent at this school? But that was old Kara... what was the future of new Kara? If Jack could get into PIE... maybe there would be more happy times? How could I make that happen? Nora had seen too many tears, too many fights, too many screams. I was worried about her. It didn't seem like this school had any counseling. I would have to be brave and talk to her teacher. Miss D is kind, she understands. She will spend some extra time with Nora today. She wants to spend some extra time with Nora out of school. I am thankful I am at Catholic school and that Miss D is so kind and compassionate to Nora. Miss D hands me a box of tissues... I go to mass....
Nora is beautiful. She is gorgeous. She deserves so much. She is so capable. She has so much potential. I want to be strong. I want to help her reach her potential. I am scared I am not strong enough. I pray to God, to Mary... help me to be a stronger mother, have mercy on me. Please help me. Take these tears away. Give me peace. I started the school year with everything I had ever wanted... the school year is ending... everything is different..... I am scared.
I try to focus on Nora and the mother's day mass. Sometimes I am successful.. Sometimes my eyes just close... I am desperate... I tell myself to be strong for Nora.... After mass we go to a reception... she gives me a mother's day present... so cute... and a card, "I love my mom because she lets me have friends over because my brother is sick." And the truth is... I don't think I can even handle having friends over anymore. What can I give my daughter? I need to get Jack into these special schools.
1:00pm - We are touring Autism Matters. This is the other school Dr. R recommended. I am excited about this school. It is in Ridgedale. Right by Sally and Tim, Lisa, Grandma Joan... right by my work. Could this be the answer? I have hope. Hope is back. I smile. I cheer. We go in the school. It is worse than PIE. It is uglier, stranger, smells moldy.... its weird. the kids here are even stranger, more extreme. Autism Matters seems more chaotic. I feel more comfortable with PIE. But Autism Matters is so much closer to home. It comes highly recommended. They are good with speech. Jack does have some speech, not much, but more than other autistic children. This school could open the world of language to Jack.
I tell myself to open my eyes... open a third eye... see more... be more... grow... I am growing, I am stretching... but there are growing pains.. Yes - I am going through a true growing pain. someday I will be stronger, but right now it hurts.... it hurts so very much.... The school is chaotic, the students are strange.... but I remember what Dr. R said (actually I had talked to her via phone not more than an hour ago)... She said, "If my child had autism - I would send them to PIE or Autism Matters... whichever I could get them into first." I will trust her. Old Kara does not like this school or these children... New Kara says open your eyes, your heart, your mind, trust your doctor... this is for Jack.
I want to make PIE or Autism Matters happen for Jack.... I can't afford either. I can't figure out the insurance. Paul calls the lawyer Dr. R recommends. We leave a message. I hope someone can help us. Hope, hope, hope. Jack, Jack, Jack. Nora, Nora, Nora. Hope, Nora, Jack. The words run through me like a mantra. I repeat them, I whisper them..... I am scared.... I keep praying for Hope, for Jack, for Nora.
The director at Autism Matters suggests that we look at The Holland Center. It is right by Paul's work. It takes an insurance that is much easier to obtain. Hope is stronger than ever.
4:00pm - I call the Holland Center. They say I can have a tour, but they don't want to get my hope up. They are full. Ever since they started accepting MA - they have been overflowed with applicants. Maybe we could get in 6 months from now. I am sad, hope is gone. I am frustrated. I will complete the paperwork on Monday and be placed on the waitlist on Monday. I will take a tour on Thursday.
I want PIE, Autism Matters or Holland Center. I want to make it happen. I want to do something besides hope. I call the lawyer again... No answer. I all the MA government line for insurance... I push buttons for 40 minutes... finally the recording says that the office is closed. It is 5pm... There is nothing else I can do.... and then I call a neighbor....
My neighbor works for the Wayzata school district. I ask her - are there any special ed teachers that would like to work for private pay over the summer? she is kind, compassionate.... she will reach out to special ed and speech therapy teachers. I am happy to hire full time or part time. I will fight, I will be strong. I will reach out.... My neighbor will call me back on Monday. I hope again.
I have no choice. Nora and I drive to school. I try to explain to her how tired I am, how much I want to be with her, how much i love her and I try to explain the but, the huge BUT... I am so very tired, I have been pushed beyond my limits, my strength is being tested... She is so kind and sweet. I love her. I wish I was stronger. I get over the moment... and I am strong... and then... just as quickly... I can't breathe... tears - huge tears - drop down my cheeks. I hide behind my sunglasses. I put my hand behind me and hold hers. I want to be strong, I want to be strong... but I am weak and need to get stronger....
8:30am - I drop Nora off. I come into school. I used to love coming here. How many happy times had I spent at this school? But that was old Kara... what was the future of new Kara? If Jack could get into PIE... maybe there would be more happy times? How could I make that happen? Nora had seen too many tears, too many fights, too many screams. I was worried about her. It didn't seem like this school had any counseling. I would have to be brave and talk to her teacher. Miss D is kind, she understands. She will spend some extra time with Nora today. She wants to spend some extra time with Nora out of school. I am thankful I am at Catholic school and that Miss D is so kind and compassionate to Nora. Miss D hands me a box of tissues... I go to mass....
Nora is beautiful. She is gorgeous. She deserves so much. She is so capable. She has so much potential. I want to be strong. I want to help her reach her potential. I am scared I am not strong enough. I pray to God, to Mary... help me to be a stronger mother, have mercy on me. Please help me. Take these tears away. Give me peace. I started the school year with everything I had ever wanted... the school year is ending... everything is different..... I am scared.
I try to focus on Nora and the mother's day mass. Sometimes I am successful.. Sometimes my eyes just close... I am desperate... I tell myself to be strong for Nora.... After mass we go to a reception... she gives me a mother's day present... so cute... and a card, "I love my mom because she lets me have friends over because my brother is sick." And the truth is... I don't think I can even handle having friends over anymore. What can I give my daughter? I need to get Jack into these special schools.
1:00pm - We are touring Autism Matters. This is the other school Dr. R recommended. I am excited about this school. It is in Ridgedale. Right by Sally and Tim, Lisa, Grandma Joan... right by my work. Could this be the answer? I have hope. Hope is back. I smile. I cheer. We go in the school. It is worse than PIE. It is uglier, stranger, smells moldy.... its weird. the kids here are even stranger, more extreme. Autism Matters seems more chaotic. I feel more comfortable with PIE. But Autism Matters is so much closer to home. It comes highly recommended. They are good with speech. Jack does have some speech, not much, but more than other autistic children. This school could open the world of language to Jack.
I tell myself to open my eyes... open a third eye... see more... be more... grow... I am growing, I am stretching... but there are growing pains.. Yes - I am going through a true growing pain. someday I will be stronger, but right now it hurts.... it hurts so very much.... The school is chaotic, the students are strange.... but I remember what Dr. R said (actually I had talked to her via phone not more than an hour ago)... She said, "If my child had autism - I would send them to PIE or Autism Matters... whichever I could get them into first." I will trust her. Old Kara does not like this school or these children... New Kara says open your eyes, your heart, your mind, trust your doctor... this is for Jack.
I want to make PIE or Autism Matters happen for Jack.... I can't afford either. I can't figure out the insurance. Paul calls the lawyer Dr. R recommends. We leave a message. I hope someone can help us. Hope, hope, hope. Jack, Jack, Jack. Nora, Nora, Nora. Hope, Nora, Jack. The words run through me like a mantra. I repeat them, I whisper them..... I am scared.... I keep praying for Hope, for Jack, for Nora.
The director at Autism Matters suggests that we look at The Holland Center. It is right by Paul's work. It takes an insurance that is much easier to obtain. Hope is stronger than ever.
4:00pm - I call the Holland Center. They say I can have a tour, but they don't want to get my hope up. They are full. Ever since they started accepting MA - they have been overflowed with applicants. Maybe we could get in 6 months from now. I am sad, hope is gone. I am frustrated. I will complete the paperwork on Monday and be placed on the waitlist on Monday. I will take a tour on Thursday.
I want PIE, Autism Matters or Holland Center. I want to make it happen. I want to do something besides hope. I call the lawyer again... No answer. I all the MA government line for insurance... I push buttons for 40 minutes... finally the recording says that the office is closed. It is 5pm... There is nothing else I can do.... and then I call a neighbor....
My neighbor works for the Wayzata school district. I ask her - are there any special ed teachers that would like to work for private pay over the summer? she is kind, compassionate.... she will reach out to special ed and speech therapy teachers. I am happy to hire full time or part time. I will fight, I will be strong. I will reach out.... My neighbor will call me back on Monday. I hope again.
Day 2 - May 10, 2012
5:15 am I wake up early. I am still alone. So much to do, to take care of. I am glad Sylvia is leaving. I cannot speak to her. I am still to angry at her. I know I shouldn't be - but I am. She isn't strong, she isn't brave, she isn't take charge. Those are the things I need. I need strength - she takes from my strength. I don't have any to spare. I can't be with anyone who takes my strength away.
7:00am I get Nora ready. I get Jack ready. I get myself ready. We get ready to leave for our day. Sylvia avoids me. She is wise. There is nothing anyone can say to me. She says goodbye to Nora. Jack says goodbye to Sylvia. She doesn't hear him, she doesn't pay attention to him. I am furious. Again, I hear Jack say 'good-bye' to Sylvia and I see him wave at her. Twice! She missed it twice!!!! Does she not love him? Why doesn't she look at him? She never tried. She never tried. She is weak. You must be strong to know Jack, to love Jack. She is weak, she will never know Jack. My anger, my resentment grows. I am glad she will be gone when I get home.
9:10am Jack and I arrive in Edina at Partners in Excellence. It is an ugly building. It is right on a major road. There is a pathetic small little piece of grass with a small jungle gym. I am not surprised when I take the tour that they do not show me the outdoor area. The school is so sterile. The children are all so odd, so strange. And I know that I see Jack with a mother's love. I do not see him as others see him. I am being stretched, stretched. I know that these strange, odd children have parents. Parents who have gone through what I am going through now. Parents who are strong. I need to be strong. I love Jack. I love these children. I am proud of Jack, proud of these children, grateful for this school and for those who go into this profession. I smile at the children. I am strong for Jack. The school is strange. It is not like a daycare or preschool room. It is an open room. There is a large trampoline and swing in the middle. Jack's favorite activities. And Jack is happy. He is happy here. He is off with a therapist... he is laughing, he is having fun.
I am trying to learn. I am opening my eyes. I am understanding the therapy. I believe it will work. Yet it is so strange and foreign to me. The children each get there own cubes - yes - like my cube at work. They do drills all day long. Their days and routines are strange to me. It is not what I had imagined providing for my 2.5 year old. I will trust Dr. R. I cannot trust Kara - she has made too many mistakes already. I remind myself this is about Jack, this is not about Kara. I am learning more and more about ABA therapy. I want to make this happen for Jack. When can we start? Hope is back. I smile.
It is so far from home. But when can we start? Maybe we could move to Edina? That is a nice place to live? Maybe we can be happy? Yes - lets choose this school, let's live in Edina. We will be happy. It will be okay. When can we start? I learn that the school is expensive $55 a hour. I am quiet. I calculate in my head... I calculate... I calculate again....It is $2,200 a week. I want to go through my savings. I want to do it. I calculate the costs... It is $114K a year. I cannot afford it. I am told my insurance won't cover it. Hope is gone.
I am told of government insurance programs. The system is overloaded, resources are strained. 90 day options, 6 month options. I download forms, I read them, reread them, study the rules. I can make no sense of them. I call Paul. We will have to hire a lawyer. I know it. I am a CPA, I study contracts every day.... this is so much harder.
I am told I am so lucky to have identified something is wrong and to have my ASD before Jack turned 2.5. If I start treatment now - there is so much opportunity. But I can't start treatment. I can't afford it. I wish I was already on medicaid - then I would have access. But I'm not. We are falling through the cracks. I am swimming against a strong current. It is drowning me. I am haunted. Something is going seriously wrong with my child. I have a small window to make a difference. But it is locked. I cannot unlock the access to that window.... I need to find the key....The current is stronger, I swim harder.... but I am feeling so very tired, so tired.... I am in a rip-tide, I am being swept out to sea.
7:00am I get Nora ready. I get Jack ready. I get myself ready. We get ready to leave for our day. Sylvia avoids me. She is wise. There is nothing anyone can say to me. She says goodbye to Nora. Jack says goodbye to Sylvia. She doesn't hear him, she doesn't pay attention to him. I am furious. Again, I hear Jack say 'good-bye' to Sylvia and I see him wave at her. Twice! She missed it twice!!!! Does she not love him? Why doesn't she look at him? She never tried. She never tried. She is weak. You must be strong to know Jack, to love Jack. She is weak, she will never know Jack. My anger, my resentment grows. I am glad she will be gone when I get home.
9:10am Jack and I arrive in Edina at Partners in Excellence. It is an ugly building. It is right on a major road. There is a pathetic small little piece of grass with a small jungle gym. I am not surprised when I take the tour that they do not show me the outdoor area. The school is so sterile. The children are all so odd, so strange. And I know that I see Jack with a mother's love. I do not see him as others see him. I am being stretched, stretched. I know that these strange, odd children have parents. Parents who have gone through what I am going through now. Parents who are strong. I need to be strong. I love Jack. I love these children. I am proud of Jack, proud of these children, grateful for this school and for those who go into this profession. I smile at the children. I am strong for Jack. The school is strange. It is not like a daycare or preschool room. It is an open room. There is a large trampoline and swing in the middle. Jack's favorite activities. And Jack is happy. He is happy here. He is off with a therapist... he is laughing, he is having fun.
I am trying to learn. I am opening my eyes. I am understanding the therapy. I believe it will work. Yet it is so strange and foreign to me. The children each get there own cubes - yes - like my cube at work. They do drills all day long. Their days and routines are strange to me. It is not what I had imagined providing for my 2.5 year old. I will trust Dr. R. I cannot trust Kara - she has made too many mistakes already. I remind myself this is about Jack, this is not about Kara. I am learning more and more about ABA therapy. I want to make this happen for Jack. When can we start? Hope is back. I smile.
It is so far from home. But when can we start? Maybe we could move to Edina? That is a nice place to live? Maybe we can be happy? Yes - lets choose this school, let's live in Edina. We will be happy. It will be okay. When can we start? I learn that the school is expensive $55 a hour. I am quiet. I calculate in my head... I calculate... I calculate again....It is $2,200 a week. I want to go through my savings. I want to do it. I calculate the costs... It is $114K a year. I cannot afford it. I am told my insurance won't cover it. Hope is gone.
I am told of government insurance programs. The system is overloaded, resources are strained. 90 day options, 6 month options. I download forms, I read them, reread them, study the rules. I can make no sense of them. I call Paul. We will have to hire a lawyer. I know it. I am a CPA, I study contracts every day.... this is so much harder.
I am told I am so lucky to have identified something is wrong and to have my ASD before Jack turned 2.5. If I start treatment now - there is so much opportunity. But I can't start treatment. I can't afford it. I wish I was already on medicaid - then I would have access. But I'm not. We are falling through the cracks. I am swimming against a strong current. It is drowning me. I am haunted. Something is going seriously wrong with my child. I have a small window to make a difference. But it is locked. I cannot unlock the access to that window.... I need to find the key....The current is stronger, I swim harder.... but I am feeling so very tired, so tired.... I am in a rip-tide, I am being swept out to sea.
Medical Diagnosis - May 9, 2012
5:10 am. A long day. A hard day. I started the morning with hope. I knew there was something wrong. How long had I known? Maybe a year, maybe longer. I just didn't understand. I thought it couldn't be. And yet - now - a year longer - here I was. I woke up early. Got myself ready. Packed Jack's bags - toys, diapers, snacks. Packed my bags - full of paperwork, standardized tests, questionnaires. Jack woke up. I tried to make him comfortable. I put on his favorite TV show - Dora. I knew today would be hard for him, for me. I knew that the future would be hard... but I had hope.... I still had hope... but for how long? Was there just a few hours left of hope?
I set out Jack's food. Would he eat it? I never knew. A homemade muffin - made with Almond Milk, wholewheat flour, squash, pumpkin, chocolate chips. A yogurt topped with colorful sprinkles. Frenchtoast - whole wheat toast, organic eggs, pumpkin. Almond milk to drink. I was trying so hard. I would try anything. I wanted to help, to do anything... the morning was going by quickly.
7:30 am I got Nora up. I missed her. Wanted to be with her. Wanted things to be simpler. I put those thoughts aside. I got her dressed, did her hair, packed her bookbags. She was ready to go. A neighbor picked her up and took her to school. I was jeaolous, I wish I could have taken her to school. Nervousness took me over. It was time to go.
How many hours left of hope? I worried not many. I stopped at McDonald's - a breakfast sandwhich for me, a hashbrown for Jack. Time to pick up Hannah. At least I would not be alone. I wished Paul was with me. I needed him. I needed my partner. Was I losing my son? Would I lose my husband? Would I lose my daughter? I was losing myself.
8:30 am I picked up Hannah. I focused on directions, talking, driving. I went 394 W when I meant to go 394 E. It was an out of body experience. Someone else was driving... I don't know how I did it. Real Kara was scared, crying, screaming. I was driving, but I was imagining myself running. Running, running, running. It felt good, I felt strong... I never wanted to run... but I heard a train. It was louder and louder and louder. It was coming and I could not outrun it.
9:30 am Our appointment begins. Dr. R is so kind. We start with a parent interview. I leave Jack with Hannah. He is happy. Dr. R asks us about the past two years - starting in chronological order. Paul is on the phone - conference call - he is in Chicago. I focus on answering all of her questions. I try to be honest, to answer clearly, to admit what I don't know. She asks, "Does Jack know his name? Does he respond to his name?" I know that he doesn't. I've been testing it myself. He doesn't know his name. He doesn't respond to questions. He doesn't follow directions. He isn't social. He has abnormally long, strong temper tantrums. He doesn't hold eye contact for long periods of time. He rarely speaks - he usually cries, or grunts. Dr R asks how many relationships Jack has. I answer, "Not many.. me, to a lesser degree - Paul and Nora. His teachers. That's it." And I remember that day in Dr. Bryan's office in late December... I was so overwhelmed... I asked her if something was wrong, was Jack normal? Dr. Bryan asked me, "Why do you think something is wrong?" I say, "No one likes Jack or wants to spend time with him, not even his grandparents. Is that normal?" I am full of embarrassment, regret, shame. She stops and take me seriously... "No - it is not normal. Something could be wrong. Come back and see me - without Jack."
I know the truth, I know it is bad... but still I hope. The parent interview lasts a long time.
11am It is time to evaluate Jack. We've been through so many evaluations. This one is supposed to be fun. I still have hope. I watch Jack interact with the toys, interact with Dr. R. Jack is similing and laughing. Is he doing good? Will I hear PDD-NOS? I tell myself - YES! I am full of hope. I think this portion is about an hour long. It is hard to remember. Jack has a dirty diaper - he does not care. Is that normal? I worry it is not. I am scared. I am proud of Jack. He is so young - not yet 2.5 - and so many tests, this world is hard for him. The evaluation comes to an end. Dr. R needs some time to formulate the diagnosis. I don't even ask for a hint or what she is thinking. I don't want to know. I want to hold onto hope.
12:45pm Time for diagnosis. Dr. R explains there are 3 Criteria for an autism (ASD) diagnosis.
The first is socialization. Jack has inconsistent eye contact; he lacks language skills, he is not reciprocal, he socializes on his own terms - based on meeting his needs, he is not interested in peers, he doesn't respond to his name.
The second is communication. Jack has a delay in language, he doesn't understand, he is behind....
The third is restrictive interests and repetitive beheviors. Jack is rigid in his patterns and expectations. He is extremely upset when his expectations are not met. He has hand flapping. His focus in intense where he wants to focus. He is not open to transitions or changing his focus.
3 criteria for ASD. 3 criteria met. Hope is gone. Jack has full autism. I don't get to hear PDD-NOS, I don't get Aspergers. I had hoped, wished, wanted... Good-bye hope. What does this mean? I am scared....
Dr. R is so, so nice... she tells us what she recommends, answers questions, tells us we can cure this.... I am glad Sally is taking notes. I could talk to Dr. R forever. I have so many questions. I am doing okay. Then Dr. R suggest genetic testing. She is concerned for Nora - for Nora's children. Grief overcomes me. Will I never know peace? Over the past weeks I had cried so many times - but never as hard as the night I prayed, begged to God that Nora would NEVER know this pain. I begged him to spare her this pain. I love her so, so much. I begged God to give her happiness, give her a beautiful life, let her hold her babies in her arms. She is such a beautiful, compassionate person. She would be a wonderful person. I don't want to know what other cruelties my genes my have in them. I curse myself. I hate myself. I am so angry. I don't know what to do. My face crumbles. I cry. There is no comfort.
3:30pm Back home. I call a friend to pick up Nora and bring her home. I am so tired, so overwhelmed. I feel every emotion. I have never felt so alive. I realize I am desperate. I am desperate for my son's life, for my daughter's life, for my life, for Paul's life. I am desperate to save my family.
I see Sylvia. I am filled with an indescribable rage. I am cruel. I am mean. It doesn't matter. I am so angry at her. She got to cry in bed, to anyone who would listen for months, was it years? What was she crying about? A divorce from a man she didn't love? She didn't get the retirement or the house she wanted?
My child had stopped developing. What did it mean? It was not good. My genes may be bad. Nora may have those genes. Would others have those genes? I didn't want to know. I was angry. I would have gladly divorced my spouse - thrown everything away - to save Jack, to save Nora. I wanted privacy, I wanted Paul. I wanted to scream. I did scream. I was going crazy. I wanted to be strong. But I could hardlly breathe.
6:30pm I took Nora to soccer. Took Jack with me. Sylvia was weak. I had hurt her. I realized it was easy for me to hurt others. I myself was so hurt, so damaged - nothing anyone could say back to me would hurt me. I was so hurt, so damaged - I was dangerous. I was alone. I needed Paul. He was not there. The only strength I had was my own. It was not enough.
It is too painful to write about the rest of the day, the night. My world was gone. I looked through photos. I felt I had lost everything. There was old Jack, old Kara, old Nora, old Paul. I wanted to time travel. I wanted to grab them back. Tell them how much I loved them, how good they were. I missed them so much. They were ghosts. I had to find new Jack, new Nora, new Kara, new Paul. I had to find them, help them, save us. I made plans to visit a school for Jack the next morning. I would find the best care for Jack. I would find it, I would do it. My whole life had prepared me for this moment. I was strong. I would be strong. I would save my son. I would show my daughter strength, grace, compassion, wisdom. I would teach both children. I would save my family. I had failed today. I would do better tomorrow.
I set out Jack's food. Would he eat it? I never knew. A homemade muffin - made with Almond Milk, wholewheat flour, squash, pumpkin, chocolate chips. A yogurt topped with colorful sprinkles. Frenchtoast - whole wheat toast, organic eggs, pumpkin. Almond milk to drink. I was trying so hard. I would try anything. I wanted to help, to do anything... the morning was going by quickly.
7:30 am I got Nora up. I missed her. Wanted to be with her. Wanted things to be simpler. I put those thoughts aside. I got her dressed, did her hair, packed her bookbags. She was ready to go. A neighbor picked her up and took her to school. I was jeaolous, I wish I could have taken her to school. Nervousness took me over. It was time to go.
How many hours left of hope? I worried not many. I stopped at McDonald's - a breakfast sandwhich for me, a hashbrown for Jack. Time to pick up Hannah. At least I would not be alone. I wished Paul was with me. I needed him. I needed my partner. Was I losing my son? Would I lose my husband? Would I lose my daughter? I was losing myself.
8:30 am I picked up Hannah. I focused on directions, talking, driving. I went 394 W when I meant to go 394 E. It was an out of body experience. Someone else was driving... I don't know how I did it. Real Kara was scared, crying, screaming. I was driving, but I was imagining myself running. Running, running, running. It felt good, I felt strong... I never wanted to run... but I heard a train. It was louder and louder and louder. It was coming and I could not outrun it.
9:30 am Our appointment begins. Dr. R is so kind. We start with a parent interview. I leave Jack with Hannah. He is happy. Dr. R asks us about the past two years - starting in chronological order. Paul is on the phone - conference call - he is in Chicago. I focus on answering all of her questions. I try to be honest, to answer clearly, to admit what I don't know. She asks, "Does Jack know his name? Does he respond to his name?" I know that he doesn't. I've been testing it myself. He doesn't know his name. He doesn't respond to questions. He doesn't follow directions. He isn't social. He has abnormally long, strong temper tantrums. He doesn't hold eye contact for long periods of time. He rarely speaks - he usually cries, or grunts. Dr R asks how many relationships Jack has. I answer, "Not many.. me, to a lesser degree - Paul and Nora. His teachers. That's it." And I remember that day in Dr. Bryan's office in late December... I was so overwhelmed... I asked her if something was wrong, was Jack normal? Dr. Bryan asked me, "Why do you think something is wrong?" I say, "No one likes Jack or wants to spend time with him, not even his grandparents. Is that normal?" I am full of embarrassment, regret, shame. She stops and take me seriously... "No - it is not normal. Something could be wrong. Come back and see me - without Jack."
I know the truth, I know it is bad... but still I hope. The parent interview lasts a long time.
11am It is time to evaluate Jack. We've been through so many evaluations. This one is supposed to be fun. I still have hope. I watch Jack interact with the toys, interact with Dr. R. Jack is similing and laughing. Is he doing good? Will I hear PDD-NOS? I tell myself - YES! I am full of hope. I think this portion is about an hour long. It is hard to remember. Jack has a dirty diaper - he does not care. Is that normal? I worry it is not. I am scared. I am proud of Jack. He is so young - not yet 2.5 - and so many tests, this world is hard for him. The evaluation comes to an end. Dr. R needs some time to formulate the diagnosis. I don't even ask for a hint or what she is thinking. I don't want to know. I want to hold onto hope.
12:45pm Time for diagnosis. Dr. R explains there are 3 Criteria for an autism (ASD) diagnosis.
The first is socialization. Jack has inconsistent eye contact; he lacks language skills, he is not reciprocal, he socializes on his own terms - based on meeting his needs, he is not interested in peers, he doesn't respond to his name.
The second is communication. Jack has a delay in language, he doesn't understand, he is behind....
The third is restrictive interests and repetitive beheviors. Jack is rigid in his patterns and expectations. He is extremely upset when his expectations are not met. He has hand flapping. His focus in intense where he wants to focus. He is not open to transitions or changing his focus.
3 criteria for ASD. 3 criteria met. Hope is gone. Jack has full autism. I don't get to hear PDD-NOS, I don't get Aspergers. I had hoped, wished, wanted... Good-bye hope. What does this mean? I am scared....
Dr. R is so, so nice... she tells us what she recommends, answers questions, tells us we can cure this.... I am glad Sally is taking notes. I could talk to Dr. R forever. I have so many questions. I am doing okay. Then Dr. R suggest genetic testing. She is concerned for Nora - for Nora's children. Grief overcomes me. Will I never know peace? Over the past weeks I had cried so many times - but never as hard as the night I prayed, begged to God that Nora would NEVER know this pain. I begged him to spare her this pain. I love her so, so much. I begged God to give her happiness, give her a beautiful life, let her hold her babies in her arms. She is such a beautiful, compassionate person. She would be a wonderful person. I don't want to know what other cruelties my genes my have in them. I curse myself. I hate myself. I am so angry. I don't know what to do. My face crumbles. I cry. There is no comfort.
3:30pm Back home. I call a friend to pick up Nora and bring her home. I am so tired, so overwhelmed. I feel every emotion. I have never felt so alive. I realize I am desperate. I am desperate for my son's life, for my daughter's life, for my life, for Paul's life. I am desperate to save my family.
I see Sylvia. I am filled with an indescribable rage. I am cruel. I am mean. It doesn't matter. I am so angry at her. She got to cry in bed, to anyone who would listen for months, was it years? What was she crying about? A divorce from a man she didn't love? She didn't get the retirement or the house she wanted?
My child had stopped developing. What did it mean? It was not good. My genes may be bad. Nora may have those genes. Would others have those genes? I didn't want to know. I was angry. I would have gladly divorced my spouse - thrown everything away - to save Jack, to save Nora. I wanted privacy, I wanted Paul. I wanted to scream. I did scream. I was going crazy. I wanted to be strong. But I could hardlly breathe.
6:30pm I took Nora to soccer. Took Jack with me. Sylvia was weak. I had hurt her. I realized it was easy for me to hurt others. I myself was so hurt, so damaged - nothing anyone could say back to me would hurt me. I was so hurt, so damaged - I was dangerous. I was alone. I needed Paul. He was not there. The only strength I had was my own. It was not enough.
It is too painful to write about the rest of the day, the night. My world was gone. I looked through photos. I felt I had lost everything. There was old Jack, old Kara, old Nora, old Paul. I wanted to time travel. I wanted to grab them back. Tell them how much I loved them, how good they were. I missed them so much. They were ghosts. I had to find new Jack, new Nora, new Kara, new Paul. I had to find them, help them, save us. I made plans to visit a school for Jack the next morning. I would find the best care for Jack. I would find it, I would do it. My whole life had prepared me for this moment. I was strong. I would be strong. I would save my son. I would show my daughter strength, grace, compassion, wisdom. I would teach both children. I would save my family. I had failed today. I would do better tomorrow.
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