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!! :)