Finally Diagnosis Bound!

     When Matthew was three years old he started attending a Special Needs Preschool. Based on his evaluation, that I discussed earlier, he qualified for the school. He received speech therapy and occupational therapy at school. Matthew enjoyed school once you got him there. Each day I would get him ready. He did not transition well at all and due to sensory issues (texture of clothes), mornings could be a challenge! There were many days I would carry him to the bus stop screaming. He would scream in the car while we waited for the bus to come. I would strap him in his bus seat and be exhausted going home. I would go back to my car and hear him screaming. Sending him to school with a Thomas the Tank Engine figurine helped comfort him on the bus. I will never forget the bus driver assuring me one day that as soon as they drove away he would stop crying. There were many days he fell asleep on the bus ride to school. Most likely he was worn out from the transition from home to school.
     So the screaming, lining up toys, meltdowns and no language continued. There were times it was so bad that I would put him in his room and put the gate up so he could not get out. Of course there were times he would tear his room apart.
     In the meantime, I was making phone calls and getting on everyone's waiting lists to get Matthew an appointment with a Child Psychologist. We wanted to get him evaluated. I knew in my heart that there was more going on than Developmentally Delayed.      So one day when I had him gated in his room I called two places that were recommended to me. One place told me we were getting closer on the waiting list. The second place I called I burst into tears to the receptionist. I explained our situation and that I was trying to get him evaluated and was on many waiting lists. This woman was very compassionate! She said they might have an opening and would call me back. Sure enough the next day she called and we finally got an appointment! There was a sense of relief that we were finally going to get the help we need.

                

Our Little Water Bug

       In the Fall of 2002, Matthew started attending the Special Needs Preschool. He was 3 years old. Besides going to Preschool everyday, he received Speech Therapy three times a week from the Speech Therapist that he kicked at the evaluation. We were hoping this would help get his speech and language going. I had put Matthew on many waiting lists to get an evaluation. The school said he was just Developmentally Delayed. I continued to suspect more than that. He lined up his toys, flapping his arms with a grimace on his face and lots of crying and screaming. He had trouble transitioning and could not handle crowds, many times we had to leave public events early with him screaming.We got to the point we did not eat at restaurants much. You never knew when something would set him off. Matthew could not tell us what was wrong because of his significant speech delay.
     We learned along the way that Matthew's meltdowns would subside when he was in the bath tub. He would play and smile happily whenever he was in the tub. He loved the water! Summer camps that had swimming in them were a hit to him. Easter Seals had a Day Camp with swim lessons, They taught him how to swim.
    

 Later, when Matthew was diagnosed with autism, one of his therapies for early intervention was Aquatics Therapy with an Occupational Therapist. This therapy was at a Physical Therapy Center. They would do gentle water exercises in the pool and play games. He was very relaxed and happy during the hour long sessions. Soft music was played during the sessions so that added to the relaxation.

     One summer at the Easter Seals Day Camp, Matthew made a strong connection with his Swim Instructor. He started working with Matthew on swimming the length of the pool. He looked forward to swimming at camp and if it was cancelled he was upset. Any camp Matthew does, still to this day, he gets upset if swimming is cancelled.
     Moving forward a few years, in third grade he tried out for an indoor swim team. We saw an article in the newspaper and thought we would give it a try. This was not Special Olympics but a competitive, all year round team. I took him to tryouts and explained to the coach that he had autism. She told me he could give it a try. He struggled a little in the tryouts and I went to help him (I used to be a swimmer :)). The coach told me to go sit down that he would be fine. So I sat and watched, nervous for him. After he was done she came up to me and said that he made the team and that she wanted to work on his strokes. Competitive swimming started for Matthew when he was 9 years old. He is 15 now and still swimming!  

     

  

Progress On The Journey To Diagnosis

     I regrouped and started making calls to have Matthew evaluated. We got on waiting lists as I worked my way down the list that was given to me by the Speech Therapist at Children's Hospital . One of the things she told me was important to do was get him into a Special Needs Preschool. Hilliard Public Schools had one so I contacted them and set up a time to have him evaluated to see if he qualified for the school. I filled out a huge stack of forms to apply for the school. I didn't realize at the time that anytime we started programs or applied for therapy there were lots of forms to fill out. Sometimes repeating our history would get tiring! 
     The time arrived for the evaluation at the Preschool. Matthew and I were in the school office and the speech therapist came to get us. We followed her to the classroom. The room had the School Psychologist, Occupational Therapist, Physical Therapist and a Classroom teacher waiting for us. It was intimidating. They asked me some questions about Matthew. They asked me to step out and I think they could tell by the look on my face that I was hesitant to leave the room. They told me he would be fine. The minute I stepped out the door the screaming and crying started. I slowly went down the hall, hesitating as the screaming got louder and harder. I made it down the hall and sat down in the school office. I sat there and listened to the screaming continue. Finally after twenty minutes, I asked the Principal who was sitting at the front desk at the time if I could check on my son. She told me she would call back there and see how it was going. So while I was sitting there, she talked to one of the teachers and told them that mom was concerned about her son. I was ready to go back and get him! The Principal hung up the phone and told me everything was fine and they would be done soon. He cried and screamed the entire time he was with the teachers.
     After about 15 more minutes or so the Speech Therapist brought him to me. He stopped crying the minute he saw me and jumped into my arms. The Speech Therapist said he would not do much and I was not surprised because of the screaming. Also based on what happened the last time we had him evaluated. She said at one point Matthew got so mad at her that he kicked her in the leg. During the evaluation, besides screaming he was standing at the door wanting me. They wanted him to engage with them but he was not interested.
     The good news is the Speech Therapist told me he would qualify for the Preschool. The Speech Therapist offered to work with him two to three times a week to help him start speaking more. I agreed to it and she started working with Matthew weekly. As the weeks went by he made progress and gained more words. This would be an ongoing part of our journey.
      At this point we still did not have an official diagnosis for him. The Special Needs Preschool said he had a Developmental Delay. In the meantime we continued on waiting lists for an evaluation. My intuition was telling me that there was more going on with Matthew than a Developmental Delay.  

Heading Towards a Diagnosis

     At age two and a half we finally got in for a speech evaluation. We waited seven months to get Matthew in for an evaluation. I signed him up for the first available appointment in the Columbus area we could get. We drove from Hilliard to Reynoldsburg for the appointment which was a 40 minute drive. During and after this appointment it became more clear that something was wrong with Matthew! This appointment confirmed some things and pointed me in the direction of a diagnosis.
     Mike met Matthew and I at the appointment. We signed in and took him back to the room with the speech therapist. The therapist told us the plan and we were headed to the lobby to wait. Matthew had separation anxiety and did not want me to leave him with the therapist. There was lots of screaming and crying as we closed the door. I went to the lobby to sit down. He never stopped screaming and crying! After about 20 minutes the therapist had us come back to the room. Matthew immediately came to me and stopped crying once I picked him up and gave him his pacifier.
     Mike and I sat down to hear what the therapist had to say. She said "He's a very sweet little boy but I believe he could be autistic." She said he would not do anything. He was throwing toys and kept standing by the door crying. She sent us home with a list of doctors and clinics to contact to get him a diagnosis. I walked out of there numb and in a daze. I remember saying to Mike "What are we going to do?" We had no idea what autism was! He just said quietly, "We are going to get him the help he needs." We got in our separate cars and it was a long ride home. I was numb and trying to figure out what to do next and Matthew was sound asleep in the back from his screaming fit.
      So I made sure I put the list of places to call to get Matthew help in a safe place. Once I was rested and had a plan in mind I wanted to start making calls. I wanted to get on everyone's waiting list as soon as I could. The journey to get a diagnosis continued to drag on.

Different Behavior

      The sickness cycle slowed down some after working with the Naturopath for several months. As Matthew got older, we started noticing different behaviors. Examples:
* When I would take him to see the Naturopathic Doctor, he would sit the whole time opening and closing her cabinets over and over. Everyone thought it was cute and made jokes about what a great toy that was for him.
* Matthew started flapping his arms and making a grimace face. I was wondering if he was in pain. People around me would say that he was excited. It was concerning me!
* He would take a bunch of toys and line them up when he was playing. Matthew had a pattern for his line up and got upset if we would move anything out of order!
* He enjoyed putting things on his head. We have many pictures of him with a washcloth or dish towel on his head. Something about this was comforting to him. He would walk around and play with it on his head.
* Matthew did not like touching anything that was soft, gooey and messy.
* Due to no language yet, there was a lot of screaming and running at times. I chased him down in parking lots and playgrounds many times.  We left many restaurants with him screaming. We got to the point where we did not go out much at all. The meltdowns were unpredictable and we weren't sure what would set him off.
     During all this I was starting to wonder what is going on with my child. With my Education background I knew something was not right. The Family Doctor told us every child develops at their own pace and that he was fine. We left that practice and went to a Pediatrician. At his two year well check up the Pediatrician was concerned because he did not have very much language. Maybe five words. She said lets give him six months and if he still doesn't develop more language she would do a referral for a speech evaluation.
     The journey to a diagnosis is just beginning!  

The Sickness Cycle

     A couple of months after Matthew was born, we had him in a routine of small drinks so he would not projectile vomit. He continued to gain weight during the vomiting. Matthew and I joined a playgroup through Riverside Hospital in Columbus with other Moms and babies born around the same time. We met every week at Riverside and then we continued meeting in our homes. During this time is when I started noticing that Matthew wasn’t meeting developmental milestones that the other babies were. Everyone around me kept saying that everyone develops at their own pace. In my gut I knew something wasn’t right but was hoping I was wrong.

     During this time Matthew started getting sick a lot. I believe his immunities were weakened when we did his vaccines. There was one time Matthew had a cold and the Doctor said it was okay to go ahead and do the shots. Boy was he sick after that! He got in a cycle of ear infections, sinus infections and croup. So we got in the pattern of lots of antibiotics as well. All the antibiotics he was on tore up his stomach which made for lots of screaming. There were times we thought he had an ear infection and it was belly pain. We were told to keep his diet bland to help heal his stomach.

     My sister in law had recommended a Naturopathic Doctor for some health issues I was having at the time. Naturopathic medicine is a form of alternative medicine. It’s a holistic approach with non-invasive treatment and generally avoids the use of surgery and drugs.  I learned a lot about Acidophilus and natural methods to heal the body. I decided to take Matthew to her and see if she could help us stop the sickness cycle we were on. One of the things that were recommended was no more antibiotics for him. I believe there were times that the medical Doctors couldn’t find anything wrong with him and gave us an antibiotic which in turn heightened the upset stomach and food sensitivities.

     The Naturopathic Doctor helped us a great deal! The sickness cycle slowed down. She had Matthew eating gluten free and dairy free to heal his gut and build up his immunities. We did not know that Matthew had Autism yet. The experience with this Doctor opened up doors for us to help our son. There is a place for alternative medicine! To this day we use a combination of medical and alternative medicine.      

There was lots of crying in the first few years.

And there was still more crying with cousins.

  

Light It Up Blue

Light It Up Blue is annually observed on April 2nd dedicated to raising awareness of autism. Autism Speaks, the controversial autism research organization, announced the launch of the inaugural Light It Up Blue campaign in 2010. This initiative is intended to raise international awareness of autism as a growing public health crisis in support of World Autism Awareness Day and Autism Awareness month. Blue light bulbs are purchased to Light It Up Blue to raise awareness. Some people put them out on their porch. Watch for the blue lights during the month of April.

     

Autism Speaks and the Autism Society sent out information recently that according to the CDC report, the rate for autism is now 1 in 68, which is an increase of over 30% from the 2008 CDC report. When Matthew was diagnosed in 2002 the rate for autism was 1 in 250. Services for him to get help were minimal. As time has gone by more and more services have been provided for autism. There continues to be a growing need for services to help families and individuals with autism. 

     

Families Beginning

     In the fall of 1998, my younger sister Amy announced that she was pregnant with their first child due in July. I had also discovered that I was pregnant but did not want anyone to know till I was three months along. I had had two miscarriages before I had Matthew. When I did tell my family you can imagine the excitement of having their first Grandchildren! Amy and I were both due in July. Our due dates were only ten days apart. Amy and I were so excited to be expecting at the same time!

    When Amy was twenty weeks along she was having a routine ultrasound. The ultrasound showed that the baby had a severe heart defect. She discovered she was having a boy and they sent her on for more testing. After more testing she found out her little boy had Down Syndrome. Knowing that there was a problem with his heart they were looking at open heart surgery when he arrived. Amy and Dave’s world completely changed to medical testing and Genetic testing! They handled everything well because of their strong faith in God. Prayers and family support got them through the challenges they faced. 

     In the meantime after I shared this with my Doctor she sent me on for Genetic testing and a Level 2 Ultrasound. This is when we discovered we were also having a boy. They did not find anything wrong in the Ultrasound. So we thought everything was fine. Little did we know…

     So Amy and I had our babies in the summer of 1999. Luke was born six weeks early in June and Matthew was born in July. Amy brought Luke to the hospital when I had Matthew. We have pictures of each of us holding both babies. 

(Amy with Matthew and Luke)

As time went by we suspected that Matthew had challenges. Amy is the one that spoke honestly to me about Matthew not speaking much for his age. He only had a couple of words at age two. She encouraged me to pursue a speech evaluation and stayed on me until I got him on the waiting list.

     Now I have to tell you that Luke and Matthew are best buddies! They have grown up together and their friendship is precious. Some pictures of them through the years are posted in the Photos and Images section of the Blog. My sister and I have a connection that we will always share. We support each through the ups and downs of the Disability world. We understand the heartbreak, joys and frustrations we are going through. It has been a blessing to be there for each other. I wouldn’t have it any other way!

 (Matthew and Luke at Easter)

(Matthew and Luke enjoying a snack)

                                                                                                                                

A Mother's Intuition

     First of all I want to let you know that Matthew was different from the minute he was born! After some struggles of having children, we were thrilled in 1999 to be having our first child Matthew. The pregnancy went well but the delivery was 14 hours long with some complications. When Matthew was finally born he had a very healthy set of lungs that would not stop screaming.  The labor and delivery were very hard on me so I was pretty out of it. He would not quit screaming until they wrapped him up really tight, burrito style, and put him in my arms. I will never forget the nurse standing next to me saying, “It’s a good thing he stopped screaming because we were about to call NICU (Newborn Intensive Care Unit).

     The next day Matthew would spend time in our room so I could work with him on nursing. Despite many efforts, Matthew could not nurse. We tried bottle feeding and he could not digest the milk at all. He started projectile vomiting which was huge! We started a new formula and the vomiting continued. The nurse had us burp him after every couple of ounces so he could keep it down. The vomiting continued when we brought him home. Matthew had to go to the Doctor frequently to make sure he was gaining weight. I was scared and wondering what was wrong with him. They did tell me at the hospital that he did not suck right. Could that be the problem?

    He had sensory issues right from the beginning. I believe the screaming when he was born was the bright lights and he had separation anxiety. You will see in future posts his struggles with separation anxiety. The vomiting that he had was from oral defensive sensitivities in his mouth. Some of the symptoms of oral defensiveness are:

1. Picky eater-avoiding certain textures, temperatures, or flavors of food.

2. Gagging easily or gagging with certain food textures or smells.

3. Chokes easily

4. Avoids/dislikes toothbrushing or facewashing

 The oral defensiveness continued with baby food. If it was chunky, he would gag and throw up the food.

     The journey was only just beginning. My intuition was starting to kick in that something was not right. The Pediatrician never said much in the beginning. He was gaining weight even though he was having feeding issues.  

Introduction

Always We Begin Again is thrilled to introduce Molly King to our AWBA community.  Molly has a passion for sharing her journey with others as a way of supporting those on a similar path.  We are so happy to have her on board to serve those who connect with AWBA, and are confident that you will find encouragement and inspiration in what she offers.  We invite you to engage in conversation with Molly and other readers by clicking the "comment" link and entering your own thoughts.  For ease of posting, comments are not moderated.  However, we will remove any advertising posts and information that is not supportive of the purpose of this blog.   

Thank you Molly :)

Welcome! My name is Molly King and I have been on a journey with Autism since 2002. I am married to Mike and we have two boys - Matthew age 14 and Brendan age 12. Our son Matthew was diagnosed with moderate to severe Autism when he was 3 years old. On this journey I have connected with many wonderful people who have supported, guided and prayed for us. It has been a passion of mine for a long time to support other families. Receiving an Autism diagnosis can be very overwhelming! There are many treatment options, education options as well as challenges to get support in school. On this blog I am going to start from the beginning and share our journey with Autism up until now. My hope is that it will give support to others and an understanding that you are not alone on this journey.