Autism Awareness Month

     
     As many of you know, April is Autism Awareness month. I am pleased that there is more awareness out there now. When Matthew was diagnosed at age 3 Autism diagnoses were 1 in 250. There was not much therapy and resources out there. Our only early intervention option was ABA (Applied Behavior Analysis), which we did try for a while. As soon as Matthew was diagnosed I hit the ground running looking for therapies and interventions for him. If we had County funding for it we tried it! Matthew's case manager at the time would joke with me that she needed to come to me to find out what resources and therapies were out there. You name it we tried it: Aqua Therapy, Hippotherapy, Lets Do Lunch groups, OT, Speech, Speech therapy groups, Floortime, ABA, Social skills groups wherever we found one, Cranial Sacral therapy, Acupuncture and Massage. We even took him to a DAN (Defeat Autism Now) Doctor for awhile. That experience is for another post on my blog. :)  The list could go on!
     I am his Mom and advocate. I will always advocate for him! We Autism moms ride the waves of challenge. Through the years it seems like I would get him in a good place, meaning things were going well and then a challenge would hit. Some harder than others. I could tell you about many school battles we have had. Sometimes you get to the point where you ask yourself "Does anyone out there understand Autism!" What a relief it is to make a connection with a teacher, therapist or parent that gets it. Even extended family doesn't always understand what you are going through.
          To this day it breaks my heart that he does not get to enjoy the same social events as his brother. Now that Matthew is a teenager the social skills delay are obvious. When he was younger he had friends. The children could tell he was different but still accepted him. The older he has gotten kids notice he is different and he is not included very much. I am so grateful to the teenagers on his High School swim team that include him, offer to give him rides and make sure he is part of the team.  He does not get invited out to do things, doesn't have many friends, doesn't go to school functions but he has his swimming. He is included when he is swimming on the YMCA team and High School team. I will say it has been a challenge to get him to do the social events that his special education class offers. When he goes he ends up having a lot of fun. It's getting there that's the battle.
     I am hopeful for Matthew's future. More and more Colleges and Universities are creating programs for those with Autism. We have three more years to work on transition. Lots of programs to look into! This Summer he has his first work experience at the Columbus Zoo for the month of June. You can get overwhelmed in the transition process of special education. I am trying to take it one day at a time.

         

The Holidays Continue!

     Christmas was a BIG holiday for Matthew. He talked about Santa Claus a lot through his Preschool and Elementary years. Being literal he would say things to me like "Santa bring the sun Mommy." I can remember him still talking about Santa Claus in February. In fact I came upon an old journal from 2004 and my entry said, "Still talking about Santa mid February!" "Ugh!" It took us a while to transition from Christmas. The Easter Bunny was never as big for him as Santa Claus.
     Around third grade we got Matthew into Children's Hospital Autism Center. We had a Behavior Therapist who we saw once a week. There was a Psychologist in charge of our case who worked closely with the therapist. The therapist would come to our house as needed and work on behavior concerns in the home, and we would regularly go there once a week. There have been times through the years that they offered social skills groups, and during the groups the parents would have discussions and problem solve with a Psychologist. Matthew still goes to the Center every other week and right now he is in a Teen Social Skills group, which has been good for him.
     So when he was younger we had to help him get unstuck about Santa. It could be Spring and still talking about Santa. His Behavior Therapist had me post a large laminated calendar for each month after Christmas. We would highlight the Holidays for each month and remind him that Christmas is over. We also started marking each day off on the calendar as a countdown to his Birthday. Even though his Birthday was not until July it helped him get his mind off of Christmas. There were many years that Christmas and his Birthday were an obsession for him. After his Birthday he would start talking about Christmas. We would remind him that we still had Halloween and Thanksgiving before Christmas.
     This is another example how early intervention is so important for individuals with autism. As Matthew got older he got better handling the Holidays. Christmas and his Birthday our still his favorite to celebrate! :) Lists are prepared but we are not stuck. For that I am very grateful.  

Holiday Fun!

     The Holidays are challenging for families with autism. Every year I dreaded the closer we got to Christmas break. After Halloween Matthew would start obsessing about Santa Claus and his list. The anxiety and behaviors were challenging through this time. Overstimulated by the lights, sounds, parties and change in routine. The two weeks off from school provided anxiety for the family on how to keep a structured routine for him. This is part of autism that they need a structured daily routine. When Matthew was younger we had a poster board hanging in our kitchen and I would use a picture schedule to show him what was going to happen in his day. He is very literal and if that schedule changed you had to show him because there would be crying. I stressed to family and caregivers the importance of the picture schedule for him.
     For many years our routine would be trying to get through the Holiday season and then when the Holidays were over he would start obsessing about his Birthday, which was in July. We would change from making Christmas lists to Birthday lists. There was an obsession with gifts. We worked on this with therapists yearly.
     My husband's family has a Christmas get together every year at the beginning of December. One time of year that all of his extended family gets together. They have a gift exchange for all the kids in the family. The gift for Matthew had to be a Thomas the Tank Engine train or there would be screaming! He would not understand and we would have to leave early.
     When we would visit my family in Michigan I would bring his headphones for listening therapy, squeeze toys, anything that I thought would help him through the get together. I remember putting his headphones on him during the gift giving to help him cope. We were prepared at all times to leave the area. Many times we would carry him off crying to the room we were staying in to help him calm down.
     One year we went out of town to my sister's house for Thanksgiving. Her in laws brought Christmas gifts for their family since they wouldn't be seeing them for Christmas. Matthew saw these presents and wanted to open them. This started a crying meltdown because he was not understanding that these presents were not for him. We spent a long time in our room helping him calm down and to understand those were not his. My sister hid the presents to help him calm down. Needless to say when you're out of town it's hard because you don't have all the things you need to help them calm down. After that we decided that we were going to stay at a hotel with a swimming pool whenever we visit. Swimming always calmed him down!
     The older Matthew got the easier the Holidays got. He still needs a routine on the two week break and we don't stay long at gatherings. We can tell when he has had enough and he always has his ipod and ear buds to listen to music to calm him. As he got older his communication skills improved which helped.
     We are thankful for many Therapists, Psychologists and Teachers that have helped us on this journey!! :)    

Special Needs Preschool

     Matthew was diagnosed with Autism shortly after starting school at a Special Needs Preschool. He was 3 years old. After the school initially evaluated him they said he was Developmentally Delayed. I knew there was more going on than just having a couple of delays. After several attempts and long waiting lists, we got him into a Psychologist for an evaluation. When we got a diagnosis we felt a relief to know what he had and start early intervention. I will never forget the speech therapist at the Special Needs Preschool say to me "Why do you want him labeled?" She was irritated with me. I didn't want him labeled!! I wanted him to get the help he needed!! There was more going on with him than a speech delay and a fine motor delay. Many times and particularly at a meeting with the Preschool, the Principal kept telling me how cute he was and that he was going to be a "lady killer" one day. As if cuteness will make your disability go away.
     Matthew enjoyed Preschool once he got there each day. He struggled with transition and separation anxiety. Each day it was a battle to get dressed and head to the bus stop. We lived on a cul-de-sac, so I would either drive him to the bus stop at the end of our cul-de-sac and entertain him in the car to keep him from crying. There was lots of screaming and crying as we transitioned. I remember times I carried him to the bus stop screaming. I would get on the bus and help harness him in. He always had a Thomas the Tank Engine train in his hand for comfort. I will never forget the bus driver telling me "Mrs. King, I want to let you know that once we are driving he stops crying and many times he sleeps on the bus all the way to school." Basically Matthew was worn out from his screaming/transition fit so he would fall asleep. He would get off the bus when they got to school happy and in a good mood.

The First Therapy We Tried!

       When we received Matthew's diagnosis, the Psychologists highly recommended we start with Applied Behavior Analysis Therapy, called ABA for short. ABA Therapy is used with individuals that have autism. "Behavior analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning. ABA is the use of these techniques and principles to bring about meaningful and positive change in behavior." (Autism Speaks website for more information)
     When we discussed this therapy program with the Psychologists, we learned that it is very expensive. We needed to get on the waiting list for funding on the IO Waiver. This Waiver is called The Individual Options Waiver, IO for short, it's for people with mental retardation or other developmental disabilities. We immediately got on the waiting list through our case manager, but decided to try and fund the therapy ourselves. They stressed to us the importance of early intervention for Matthew. 
     The Psychologist had a Behavior Therapist that would be in charge of our program. They helped us get the program going. We put an ad in The Ohio State University paper, "The Lantern" looking for therapists for the team. We were told that we could get college students that were studying Special Education that do this for field experience. So we got our team together and therapy was set up for Matthew in our basement.
     ABA therapy lasted six months for us. It was hard to maintain in the home. As you can imagine we had turnover with the college students plus it was expensive to keep up. One of the things that sticks out in my mind was how hard it was to have it in our home. Matthew did not transition well at all and when the therapist came he screamed all the way down to the therapy room. I was not allowed to help him transition. Many days he screamed in the transition and then all through therapy. This was so hard for me to listen to!! I wanted to help him really bad. There were many days that I put Brendan in his stroller and we walked the neighborhood until I knew therapy was over.
     Another thing we discovered is that Matthew was catching on to the things they were teaching him fast. The therapists thought that some of the screaming was from being bored with going over the same things over and over. They said he was smart. He did not have much language so a lot of times the screaming was frustration from him not being able to communicate what he wanted.
     I do not regret giving this therapy a try. Because Matthew showed them how smart he was with how fast he learned things, the Psychologist felt good about his future. He was diagnosed moderate to severe Autism in the beginning and the Psychologist mentioned High Functioning Autism as a possibility for him down the road.  
       

Many Early Interventions

     I will never forget when Mike and I were listening to the Psychologists tell us about Matthew's diagnosis. They told us that early intervention is huge for individuals with autism. The earlier they get the help they need the chances are higher for having a more productive life. They encouraged us to try everything. So needless to say I put Matthew in many different therapies. I did have to watch that we weren't too overly busy. It was easy to overbook our time. Here are some therapies that we tried:
     Hippotherapy- It's a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input.
    

This therapy was a challenge for Matthew. He was scared of the horse and we had to work at getting him on to ride it with the therapist. She would do speech and occupational therapy exercises with him while riding.
     Aquatic Therapy- This therapy is being used as an effective recreational treatment. The water environment appears to meet several needs of a child with autism that enables the child to respond well to therapy and grow. The pressure of the water is comforting and the warm temperature often provides a soothing learning environment.

    
This therapy was probably Matthew's favorite. The water made him happy and relaxed! If our day was challenging he would get done with therapy in a better mood.
     Easter Seals had a Summer school program that we did for a couple of summers. They had a pool at the time and offered swim lessons once a week. Everyday was free swim. Swimming was always Matthew's favorite part of each day.
     Matthew also got involved in a local social skills group when he was four years old. He enjoyed going to group every week and earning a prize at the end of group. Matthew tended to pick out the same prize every week which was one of his obsessions. The Psychologist worked with him on this. Matthew made friends at group and the moms became friends in the lobby waiting for their children to be done. This was a great outlet for him and me.
     We also had our weekly speech therapy and occupational therapy. Speech therapy was to help Matthew develop more language and communicate better. Occupational therapy helped his fine motor skills like writing, picking things up, buttoning a shirt or zipping coats. Occupational therapy also provides individualized treatment for sensory processing difficulties which can go with autism. These therapies were our regular ones. Matthew still gets speech therapy today and occupational therapy he is on consultation for sensory needs.
      These are some of the therapies we did when he was first diagnosed with autism. I will share more with you in the next post. 
    

Lets Talk Obsessions!

Part of Autism is that when they find something they like, they become obsessed with it. At least this has been evident in our son Matthew. It's almost like getting stuck. They can't get the object or thing off their mind. Early on, Matthew found that he enjoyed Thomas the Tank Engine. We could not go anywhere without a train. When he attended the Special Needs Preschool he had to have a train in his hand to ride the bus. The train would help him calm down and distract him so he could transition to the next thing. 

Two years in a row we went to the Day Out With Thomas in Indiana. Now I have to tell you that we had every video, every train, toys, clothes, dinnerware and bedding. This lasted till 5th grade. 

He really had a hard time letting go of the comfort of Thomas. In elementary school he would watch his movies and shows and would slip in a Thomas to watch. Early on in middle school he decided he wanted to give his video collection to family friends of ours that had little ones that enjoyed Thomas. 
    
He also liked The Wiggles. At one point I read an article about how The Wiggles were good for the Autism community. They were consistent in their show. Each of the four men had a different colored t-shirt and they never changed their shirts. The colors were red, blue, yellow and purple.

Matthew also knew who each man was by the color of the shirt. It taught him some colors too. Matthew loves music and when he was little he would jump up and down and dance to their music. This is another group that we had every video and CD. We had toys, clothes and even saw them in concert. The Wiggles were great but nothing compared to Thomas the Tank Engine!
     
As he got older he became obsessed with Star Wars. He had every movie and would watch so much he knew it by heart. Then he switched to Harry Potter movies, then Marvel movies. Nowadays its sports. He watches soccer, NFL football, college football, hockey, baseball, NBA basketball and college basketball. You name it, he likes it and memorizes the players. Right now he really likes LeBron James and wants to get some of his tennis shoes.
     
I wonder what obsession will come next! :)