Something is working…
This last year I have to say has been an amazing year. One of discovery, trial and error and much growth. This time last year our family was doing everything we could to move to a different state that provided better Autism services for our daughter. We had put our house on the market; we were trying to convince my husbands company to allow us to move to a different area. We felt lost and scared. Julie was not making progress very quickly, the state had no money to support the children in the system and to hire a therapist to work with Julie was going to be cost prohibitive. So a prayer was said. “Lord give me strength, I cannot do this on my own.” “Please lord I am not very bright, I need a billboard to show me the way.” “I will trust in you.” Well the house wouldn’t sell, the market went belly up and it hit me. I am good at working with Julie. I had been supplementing her care for the last year with the knowledge I got from her case worker on RDI treatment, the books I had read on floor time therapy and the class I had taken called More than words. The piece I felt like we needed though was a base knowledge to work from. We needed checks and balances, a way to track her progress and see where her deficits were. I had read that ABA therapy could provide this for us so I called a local therapist and asked if she could train me how to do ABA therapy and then I could administer the therapy to Julie. This was what we were looking for. This was the answer to our prayer. The other door was clearly closing and the billboard said you can do this! I am lucky enough to be at home with my kids and I was able to make the time to do the therapy. Also I was able to have my own input on her therapy, know what her goals were and do therapy in a way that I knew would be motivating to Julie. A year later and you wouldn’t know that she was the same child. Granted we still have work to do but she is doing an amazing job. She has found her voice, she is very in tuned to her emotions, she has learned to do pretend play and when she looks at me now I see her and I know she sees me too! ABA therapy was our answer. It may not be the right choice for everyone or maybe you can't commit the time to do it. But from one parent to another if I could give you any advice it would be know what your child is working on and reinforce it 24/7 being immersed in her therapy allowed me to know her goals from sun up till sun down and I could work on them in a therapy session as well as in the natural environment. No matter what therapy solution you choose for your child I ask you to be a part of their life and go through this life with them. It is the most rewarding thing you will ever do.

Tell me how you feel

A lot of our kiddo's on the spectrum have issues with their sensory processing. Some children are highly sensitive or “Hypersensitive.” Some characteristics and symptoms of Hypersensitivity are sensitivity to light, noise and touch. On the other hand some kids are Hyposensitive which is the opposite. They can’t feel the same way you or I do and are unaware of some pain, loudness ect… Julie is considered Hyposensitive. I remember one time Julie was on a stool in the kitchen with her dinosaurs and fell off to the tile floor. I ran as fast as I could to her aid to see if she was hurt and to comfort her. When I got there Julie just got right back up climbed the chair and kept on playing. There was barely an acknowledgement of the fall at all. Had that been one of my other children there would have been tears, hugs and a treat to make everything better but Julie didn’t seem to mind the fall at all. This became common place and my son began calling her Superman and would say she was as tough as steel. Another thing she would do when walking down the hall was to purposely bump into the walls. She looked like a 3 year old drunken sailor. I was later told this was her way of finding her place in space. It was like she was checking in with her body by bumping the wall. Also she really responded to deep heavy hugs, big tickles and being wrapped tightly in a blanket. I first heard the word Hyposensitivity from another mom with kids on the spectrum. It was a bit confusing at first to grasp. I didn’t understand why it was happening and what was causing it. I was later told by an Occupational therapist that Julie’s inner ear wasn’t working properly which was the reason for the imbalance. The good news was there are things that can be done to help. We took Julie to a place where there were trained Occupational Therapists who did a complete evaluation on Julie and identified all of her issues and we began work. The place we went to was a lot of fun for Julie. They had swings, beans, slides activities and more all designed to strengthen her body and help out her sensory system. Unfortunately our insurance would only provide us with 11 visits to this place (that is another topic) but I was able to recreate a lot of what they did at home. If you don’t have a location you can go to in your area I would recommend using your state resources to find an Occupational Therapist to help you. After our insurance was up we relied on an angel from our County ESD who has provided us with so much help and encouragement. Bottom line if you feel like your child is having issues in this area there is help. Julie is not cured from all of her symptoms of Hyposensitivity but she has made incredible progress.

Learn From My Mistake

Ok so I was going to write about the sensory integration piece of Autism in this Blog but something happened yesterday that I feel needs to be addressed. I am hoping you can learn from my mistake and you can take the necessary steps to avoid feeling like I did yesterday.

So it is Easter Morning and it takes me 2 hours to get everyone fed well, dressed (nicely) hair done, shoes on and out the door for church. Since I was a child I have only missed one Christmas service and only a handful of Easter services in my life. Getting the kids out the door every other Sunday I have to admit is pretty hard for us and doesn’t always happen but I always try to go on Christmas and Easter. Not that I don’t pray and love God the other 363 days of the year but you know what I mean. So we go to church at a very large church near us that we have visited in the past. They have a great children’s ministry and my 8 year old son loves going there. When we went to drop Julie off at the childcare area I mentioned multiply times to the woman that was taking her into the room that Julie had Autism. That she has the tendency to wander off and needs a close eye. I remember looking at her in the eyes when I said it to make sure she knew what I meant and felt comfortable leaving her there with the woman’s nod and reassurance. So we got our ticket with a number on it that they call if there is a problem and we went to church. It was a lovely service and we were thinking that even though the effort was great that we really need to come more often. When church was over we went to collect the kids. My parents were with us and they said they would go pick up my son Johnny and I was going to go get the girls with my husband. When we got to the room where there girls were supposed to be my daughter Jadyn was there and happy to greet us but when I asked where Julie was and they looked around the room and they couldn’t find her. I asked Jadyn “where is your sister” and again the response was I don’t know “Julie where are you?” I went into the classroom and was told they went to a different part of the church with the kids and they were going to see if she was still in that room. Still… no Julie. I started seeing panic in their eyes and my heart started racing and I began wondering where is my daughter? I then told my husband who was waiting in the hall that they couldn’t find Julie. At that point the staff at the church was on their Walkie Talkies stationing people at all of the exits and my husband was going room by room checking….. My heart was breaking inside my chest. I felt like I had 1000 butterflies that all weighed 1000 pounds on my insides. My mind in a nano second let in the what if’s and the only thing I could think was I can never leave this church because I came here with Julie and I can’t leave here without her. The fear was so great that I could hardly see and I started having a panic attack. I then thought I would be no help if I panicked and snapped back and started asking questions. Where are there dinosaurs? Where are there sea creatures or animals? Julie would try and find something like that. All I got was a blank stare of fear from the woman I was asking and she managed out that Julie was playing with the dinosaurs in the corner earlier. My Dad came in and I asked him to watch Jadyn for me so I could begin searching. As I left the room I looked down the hall at another class room and decided to start my search there. As I approached the room a woman came out and said SHE IS IN HERE! I ran to the room and held her tighter that I have ever held anyone. The people around me were talking and asking questions. I can’t tell you a word that they said. I mumbled off something and scooped her up, called my husband to tell him she was found. Went and got my other daughter and son and left.

A day later still fresh in my mind I am not able to eat my lunch today with the remaining butterflies that have taken residence in my stomach and heart. I am thinking how could things have been different how can I help make sure I NEVER have that feeling again. Julie along with most kids on the spectrum do not seek social engagement. Hence the fact they have Autism. She seeks out objects. She seeks out safe places and comfortable places. She is a flight risk. I had bought her an id bracelet that had her information on it what meds she takes that she had Autism and that she was a flight risk but that morning it never got on her arm.

So what should I have done? Here is what I will be doing in the future.
Her bracelet will be on her at all times.
I will call ahead to a place where someone will be watching my child to let them be aware of her special needs and accommodations I will need for her.
I will no longer assume that just because I said she had Autism and was a flight risk that I will be listened to.
I will talk with Julie before we go to tell her what is expected. That she needs to stay and I will use social stories if need be.


Here are some other things we did early on when we found out Julie had Autism that you may want to consider.
I called the police and gave them a description of Julie so there were aware that there was a child in this house with Autism and what she looked like.
I have bar locks on all of my doors that she can’t reach and also have a chime on the door so when a door is opened I will know it.
I am constantly working with her to learn her name and her families names.

So you know the church called and apologized and said that something like this had never happened before. That the people in the room with Julie were so sick about what had happened that they didn’t even know if they would ever volunteer again. To be honest I am not angry at the volunteers at that church. I know their hearts are in the right place but I did say that training to staff needed to be done about kids with special needs. They said they have started a buddy program for kids with special needs but it was set up for people who call ahead and make the arrangement. I said that was a good start but that some things need to be in place for the time that a family drops in. I gave her the name of the book “What every Child with Autism wishes you knew” and offered myself as a resource if they had any questions about Autism.

So bottom line is I never want to feel that loss in my heart again and I never want anyone reading this to ever have that feeling as well. Take the steps to ensure your child is safe and is in a safe environment. Call ahead, and let them be aware you are coming. Have an ID bracelet on your child if they have communication issues and are a flight risk. God has given me 3 very special children. It is my responsibility to make sure I keep them safe.

Blessings,
Janelle

A crack in the egg

The first thing we had to wrap our head around was that Julie was capable of learning but teaching her the same way we taught our other children was not going to work. A different approach was needed. Julie is now talking, requesting and communicating but when we first started she had a vocabulary of around 50 words. One of the best things we learned early on was to stop bombarding her with questions. With a NT (Nuro-Typical) child we make around 70% comments and statements and about 30% questions. For some reason that number is often reversed when it comes to kids on the spectrum. We want to feel successful and so we ask rote questions and we get rote responses. For example we say “Julie what color is the dinosaur?” “What does a dinosaur say?” and so on. So here is what we said instead: “Look at that blue dinosaur! Wow! What a neat Dinosaur! ROAR! Stomp, stomp, stomp!” When we stop asking questions and started sharing she began noticing. This has changed and we are asking her more questions now but the foundation was built here. This was the first crack in the egg.

Expecting her to understand pretend play was another thing we had to learn wasn’t going to come naturally for her. Having a child with special needs really makes you think how many things we take for granted with NT kids. To help her learn pretend play we started out using her interests which of course was dinosaurs and began very simply following what she was doing with them. If she would put the dinosaurs in a row I would add one to her row. I forced myself into her play. She wasn’t going to invite me in so I pushed my way in. Again she noticed. It was like a small spark went off that said Mom understands. From there I would sabotage her play. If she wanted to line them up I would do the same but lay one down and say “I’m sleepy.” At first this kinda annoyed her but after a while she was laying the dinosaurs down and repeating my play. She was learning from me! This led to her following me giving the dino’s high five. Then to using other items to do the same thing something that wasn’t as motivating. This was an amazing break though for us... she was learning! Little bits at a time but that didn’t matter she was learning!

Above is an example of what we did. In the clip I was rewarding her when she said a word by doing what she asked. For example if she said swing I would put the dino in her swing. Later in the clip I sabotaged her play because it was getting to rote. She followed really well and we had a great time doing it! This was a fun day and while it may not look like much to most, it was a big step for our family! This approach really helped us early on and allowed her to see she could get information from me and I could be fun to play with!

Blessings,

Janelle

How we got started

I was thinking I should share a bit more about my background so you know where I am coming from and give you more details about our start into the Autism world.
My daughter Julie is a beautiful 4 year old who I think is amazing. She has a twin sister Jadyn and an awesome brother Johnny who is 4 years older than her. She was diagnosis a year ago so while right now I am going back in my memories in future blogs you will be taking the journey with me.
My husband and I suspected something was not quite right when she was about 2 years old. But like the proverbial ostrich we stuck our heads in the sand and made excuses for the things she wasn’t doing. For example we used Julie being a twin as an excuse. Her sister was making much quicker progress than she was. Our excuse was that her sister talked for her. Or we would say it’s just a twin thing or twin talk. Twins were new to us as well. There were no twins that ran in our family so we didn’t know what it was all about. On the other hand she would make some progress and we would just say she was going to be a late talker and there was nothing to worry about.
When she neared 3 years old there was no mistaking something was different. I remember googleing the thing’s she was doing or rather wasn’t doing and what I kept seeing was Autism, PDD/NOS or Aspergers.
Here were some of the warning signs for us. She had very limited speech. She didn’t point. She fixated on dinosaurs, she had very little or no eye contact. She needed to rock and it wasn’t just for enjoyment but something that she had to do. She seemed to not be phased by pain and actually seeked situations where she could bump herself. She would walk like a drunken sailor down the hall bumping into the walls as she went. She was still walking on her toes long after she was supposed to have put her landing gear down. She would line things up rather than play appropriately with them. She would even take a Christmas catalog full of children’s toys and look for every dinosaur in the entire book. Dinosaurs are still a huge part of our life; it is her thing. If all that wasn’t enough it really hit me when I decided to ask Julie a very simple question as a little test. I asked her where the light was. It was right above her and I thought that would be an easy question to answer but when asked, there was nothing. A brief glance my way but nothing more. I thought well perhaps the question was too hard so I looked at my other daughter and asked her where is the light? She walked up to me grabbed my hand brought me to the closet and pointed to a flashlight. It wasn’t that the question was too hard. For my other daughter the question was too easy. Why is mom asking me where the light is when it is in plain view she must want for me to find something for her. I knew that I couldn’t ignore what was happening any more. I made an appointment with our pediatrician. When I went to the doctor she did a simple test to screen for Autism I can’t remember the name of it but I know it was one of the standardized tests used to check for Autism. Part way through the test I knew it wasn’t going well. She said she wanted me to go to their developmental clinic and get in touch with early childhood education because she was pretty sure Julie had autism.

The developmental Clinic was quite the experience. There was a Pediatrician to check her health, a social worker to make sure I was on the level, a speech therapist to check what level her speech was at. A Physiologist which basically I thought was there to show how smart he was (can you tell I didn’t like him!) an occupational therapist to check her gross motor and fine motor skills, a physical therapist to check how her legs and body was developing and a geneticist to check for Fragile X syndrome. I was told that they would make their assessment and then send me a report and her diagnosis if there was one but by the time I left they had given me a written diagnosis of classic ASD or Autism Spectrum Disorder. Which was basically was described to me as having impairment in 3 main areas. Social, communication and sensory. Like I said in an earlier blog I shook their hand thanked them for their help was told to contact Early Childhood education. That was a pretty heavy day.

I later contacted the county and had someone come to the house to access her. She played with her for about 15 minutes and said she would be in contact but thought that Julie would qualify for services. They did immediately put Julie in what they called a DG group which was a Developmental group where the kids that were there had an array of disabilities from very mild to severe. We then needed an educational diagnosis to get her to be eligible to have services through the County. That team consisted of a 3rd party evaluation, an evaluation from a speech therapist and an evaluation from her DG teacher. She qualified and was then put into a class specific to Autism. I can go into all of that a t as later time but this was how it all started.
There is a start to every journey a reason to go on a journey. This was ours.

Blessings,
Janelle

Here are some things we did early on that really helped our family.

1. Find a support group.
I can’t tell you how amazing it is to be able to talk to other families that understand your special circumstances. The friends you had before Autism may not understand what your family is going through. For me my friends did a good job trying to support me but didn’t understand why I was feeling the way I did at certain times. Also some of the behaviors of my child were definitely “different” from their children. It is scary to watch for people that don’t understand and while you can’t catch Autism some people act differently around you then they did before. No bad on them, they don’t mean to do it. I think it is part of human nature to be scared of what you don’t understand. This was one of the reasons that a support group was so special for us. The other benefit to finding a support group is there are other people that have already been there and done that. They can be a great resource as you decide what treatments you want to choose for your child. Ultimately you will decide what is best for your child but it is great to see what others have experienced. If you do not have a specific Autism support group in your area try and find a general special needs group. They get it too!

2. Learn about all of your treatment options. A great resource is the 100 day kit from Autism speaks here is a PDF of the kit. http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf
I will go into what we did and are doing in later blogs but learning what is out there is a great way to see what approach might work for your child.

3. Gather your team
In this fight you need help. Our team consists of her primary care physician, her neurologist, state early intervention services, developmental disabilities, an array of therapists including Speech, OT, ABA, RDI. Friends that have special needs kids, Friends without special needs kids (yes, talking to people about things other than autism is important too!) Finally, get your family on board. Grandparents mean well but often don’t understand what Autism is and it is hard for them to believe that their sweet grandchild is “different” I was really lucky and had parents and a Mother in Law that wanted to help in any way they could. They listened to what things we were doing with her and changed their behavior to meet our needs. A really good resource for Grandparents and other friends and family is a book called “Ten things every child with Autism wishes you knew” Written by Ellen Notbohm. They are some general things and tips that can help introduce your loved ones to this new world.

Please know in all this it’s ok to cry, it’s ok to be scared. You will probably feel overwhelmed at times but you CAN do it! You will find a way. You are strong and there are many people that can help you and support you along the way. You can make life for your family better. You can help your child. You have been chosen for a reason to care for your very special child. Be strong, your not alone!

My Child has Autism now what?

My child has Autism now what?
You’re in the doctor’s office, development clinic, or at the school and someone looks at you from across the desk with that look that you know is never good. A look of sympathy and concern. You know immediately something isn’t right. That the assumptions you had about your child’s progress were coming true. Then the words come. “I am sorry to tell you this but your child has Autism.” It doesn’t matter the degree to which they have it. Mild or severe; Aspergers or Retts. It all hits you the same way. Like a blow to the chest. The cannon ball had been shot and it landed right in your lap and is followed by the waves of questions and doubt. “Did I do anything to cause this?” “Can my child be cured?” “Where do I find help?” “WHY MY CHILD?”
I know this feeling very well. I can remember like it was yesterday. I was strong when the news was given to me about my daughter. I kept my composure the best I could. I even said thank you and took her hand and walked out. It was the days and weeks that followed that tested every part of my being. The questions and doubt came quicker in between the tears. I remember reading the statistics that 80% of marriages end in divorce if you had a child with special needs. I remember looking at pictures and videos of children upon children with the same vacant stare that my child had in her eyes. I remember watching a program where a father said that some day’s he wondered if his child would be better off if he took a walk to the lake behind their house and drowned. Like to somehow save his child from this world. Watching that father was a turning point for me. I was not like that man. I feel blessed to have my children no matter what package they come in. I was going to make sure my child would be better off with me helping her then not here at all! I wasn’t going to live in the world of sadness hopelessness and doubt any longer. I knew the road wasn't going to be easy. I knew there would be a lot of bumps and crossroads along the way. But I wasn’t going to give up as that man did. I wasn’t going to deny my daughter the best life possible or myself the best life possible by giving in or giving up. I now had a mission. One of acceptance, activism, and hope. I owed that to my daughter, my other children, my husband and myself.