My Place To Be

Autism to me means: a child or adult that is usually highly intelligent, unpredictable at times, creative, sensitive, fun, mysterious, beautiful, and brave! You see, Autism has come into my life through my grandson, Logan, my nephew, Jack, and many other children that I have the privilege to get to know and work with.

My grandson was a child with typical behaviors and skills. By the time Logan was 20 months old, his skills and behaviors had changed so much we could hardly believe it. Logan lost nearly all expressive language, could no longer play or make eye con-tact, and had many other troublesome signs. With little knowledge of Autism, we were scared for Logan having never met anyone that had a child who had a regression period like Logan.

Now, of course, I have met several people who have had this same thing happen to their precious child or grandchild. Go- ing to the Autism Support Group at My Place To Be (MP2B) helped me learn, accept, and understand Autism. Logan is blessed to have parents and family who are very involved. Logan also has many wonderful people in his life. These include the Hope for Autism Applied Behav-ioral Analysis team from Denison University, Dr. Bar-bara Lechner’s Language Experience Center, Play Project with Occupat ional Therapist Hol ly Wheeler, the Eleanor S. Weiant Cen-ter, and his current elementary school. Logan is also fortunate to have the wonderful people here at MP2B in his life. MP2B has done so much to help so many families. I love working here, and I think it’s so great that there is a place in our community where chil-dren with Autism and their families receive the help they need. MP2B is truly a voice for all of us, coming from a big old house with adventure, love, laughter, and fun. I know that many of us are so thankful that Christa Milner kept her dream alive. With so many hopes and dreams for my grandson, my nephew, and all children with Autism, I believe that if we all stay positive, keep our sense of humor, and – most of all – never give up, anything is possible.

After reading countless books on Autism, my favorite author – for now – is William Stillman, who has Autism. My favorite quote of his is when in doubt, “presume intellect” in the person with Autism “and interact with a belief in competence” as gently and respectfully as you would anyone else. I try to keep this in mind when working with any per-son who has Autism. In closing, I want to thank all of the wonderful people who have helped, not only my grandson, but also our whole family. I hope I will be able to help you all in the years to come. http://www.williamstillman.com

 From where I sit, and have been sit-ting for 13 years, the battle is not with the autism itself. The battle is with almost every other aspect of our lives: work, school districts, medical offices, insurance companies, and family members; even people in the store that don't know us at all, but want to stop and stare. Jake is now at an age where we need to think about driving, living on his own some day, working; scary stuff. Jake is 16 years old.

The battle today is a different one than we started fighting in 1994 when we knew something was up. Our doctor said, "let's wait until his three year physical." We said, "thanks, but if you won’t write a referral to send us to Children's Hospital for an evaluation, we'll go on our own". Jake's first year of kindergarten was his first year of "inclusion". I fought it because I wanted to feel like he was protected. I would have preferred he attend a school specifically for kids with special needs like they did when I was in elementary school. The school district we lived in was not ready for inclusion. They tried from day one to fight his being there. They fought having a one-on-one aide. They fought giving him a "safe place". They fought him being intolerant of the bus ride. They fought modifying his schoolwork. They tried bullying me into withdrawing him. I studied the law and whenever I got the chance, would professionally recite it to them. Daily, it worried me to send him to school. My life revolved around the constant battle with the school. I begged for communication. I needed to know what happened throughout his school day. He couldn’t tell me, and I needed them to understand that. Eventually, we got a fantastic one-on-one aide. Jake got one teacher who had figured out how to handle Jake. She figured out how to modify his work so that he could actually understand it. The truth is, we ended up with our aide and the teacher battling the school with me. Of course, they had to be more careful than I did because it was their job. Peggy and Rhonda, I will forever be grateful to you.

I could tell you horror stories about our experiences, but that would take a book. It frustrates me to think about it now. I withdrew Jake from the previous district because he ran away from the Junior High School, and the principal tried to cover it up. That battle went to the Teacher's Union and the principal is gone. I'm so glad to be where we are today. The school district we are in now actually seems interested in working with my son who has autism. We now have teachers who are coming up with ideas on their own. I really can't say enough good things about the school Jake is in. God has blessed us with them.  

The "big picture" the Battle of Autism is moving to a higher level. We are moving forward with legislation that will, hopefully, force insurance companies to recognize and provide coverage for those with autism. More people seem to have some understanding of autism, or at least realize that it's out there. There are programs like My Place To Be with other people fighting our same battle. Its crazy how being in a building with four or five different noisy activities going on at once can actually be relaxing and fun. It's the people around us that understand. If you don't have them, find them. People that are fighting the same battles, that makes all the difference in the world.

Christa Milner is an amazing person. It used to seem kind of spooky to me, how similar each parent's story was. I have come to expect it, and it the truth is, it makes sense. (Right now I am thinking I need to find a study researching pregnancy and delivery difficulties, and Autism, because the last three parents I have talked to have mentioned theirs, Milner's blog reminded me of theirs, and I will forever wonder if ours has anything to do with Jake's Autism.) What I see are parents that are trying so hard to find the right path to help their child. Each outcome will be different, may God Bless them all...the children, and the parents that, at the end of life, will know they never stopped trying. Being part of the My Place To Be family has made me feel not alone. Jake is so comfortable there that I know, even though he doesn't say it and I'm crying thinking it, he knows the feeling of belonging somewhere.

Christa Magers

A lot of people have asked me how did we start My Place To Be?  Well let me tell you our story which I am sure is very similar to many of you parents out there.  Rod and I were surprised to find out that we were going to have another child. Dan was 12 and we were starting over.  I had a wonderful pregnancy I think I felt the best I have in my life, at 38 weeks I had an unexplained Neurological phenomenon happen.  Still today not totally sure if it was a TIA, minnie stroke, or something else doctors never figured it out. But we made it through it.  The day of Colton's Delivery he breathed in  fluid and was taken to Neonatal unit to get him breathing better.  Within a few days was ready to go home.  So a few traumatic happenings but he seemed a health little guy and we went home.  

The first week home I did notice that he was much more alert than most newborns.  Holding his neck up to look around at everything.  Not real big on sleeping but was constantly taking in everything around him. Within six weeks the crying at night began he could not go to sleep we tried it all, at first I thought it was colic and it would pass but then after months and months we realized he was overstimulated and could not shut it off.  He was developing as a normal baby though we were seeing the milestones come and go and some very early.  He began walking around 7- 8 months and was at a full out run soon after.  He didn't really ever crawl much he went from scooting right to running.   Gross motor skills he had and was advanced at, always exploring the world through his exuberance for life.  

Communication was another thing.  He said basic words at almost normal times.  I could understand him and he was able to get what he wanted across to us.  Sometimes I thought maybe he had some telepathic quality because sometimes there were no words I just knew what he wanted.   Then I thought well maybe we just are so quick to make him happy he really doesn't have to talk to get his point across.  The terrible twos was just keeping him safe we would run from one thing to another with absolutely no fear and no pain he would run into things and I would think that has got to hurt but not Colt he just kept on going.  His "meltdowns" seemed to be increasing as he would get frustrated with things he was trying to accomplish.  By age three we noticed I could understand him but other's could not.  So more frustrations at Daycare.  Three months before his Third Birthday the Daycare called for us to come in.  I can still hear the words we can't take care of him any longer.   So we went to a second daycare and quickly realized this was not the right place for him either.  So then to find a private sitter, we quickly found out that he was too much for her.  I just remember this time of sobbing and crying what is wrong with him, there were times I began wondering if he was possessed.  I just wanted a place where my child belonged and was able to be himself.      We then found Public Preschool and guess what Colt qualified for intervention!  YEAH finally someone would help us and that they did. Within a couple of months we had him evaluated for Sensory Processing Disorder by our OT.  And he met 5 of the 6 areas of deficiency.  We began OT right away and he did great, we started seeing some improvements.  We were also blessed with wonderful teachers at Flying Colors that were seeing things as professionals that were helping us to see there was more going on in Colton's development.  

I got on the internet and researched almost every night and we set appointments to get into clinics to see what is really going on.  We got on the waiting list to go to Children's Hospital, and in the mean time we went to the local mental health agency.  They spent a 1/2 hour with Colton in a very small room and said he has oppositional  defiance disorder and ADHD.  Not take any further test or even doing a questionnaire,  I was outraged over this all Three year olds are Oppositional Defiant when you look at the diagnosis.  I would not accept this diagnosis.  ADHD? he is Obsessive about completing task to the point we can't just build one puzzle we have to build all 20 we own,  Legos we have to use every block to finish how can you say he has Attention Deficit Disorder.   I always saw the hyperactivity but Attention Deficit?  After 9 months of waiting we got into Children's Hospital Autism clinic, we went to a room that had 2 way mirrors.  Immediately. when the doctors came into the room Colton hid under the tables and would not come out.  after a while a girl coasted him from under the table and drew a picture of a black cat and asked Colton what is this, his response a jaguar.  Our report came back and I was so disappointed we read through and the first line was many Autistic tendencies but does not demonstrate Autism, we were given the ADHD diagnosis again.  I just wanted answers I was still searching on the internet  and reading books I was in a books store and this book kept jumping out at me about Asperger's Syndrome, I had never heard of this disorder,  I just kept being drawn back to this book. Divine intervention almost so I bought it.   I started reading the book that night and could not put it down it was almost like it was written about Colton.   I kept searching the internet and was doing additional research on Asperger's and came across a Doctor that specialized in ADHD and Asperger's Syndrome. I thought o k it is worth a try lets go see him.   We did he took all of our previous testing reports and school reports we filled out more testing he met with Rod and I for a visit.  Then he met Colton for a visit and told us he truly believed Colton had Asperger's Syndrome he was younger than most kids are when they are diagnosed but he had was meeting the six diagnostic criteria.  I hate to say it but I was relieved with the diagnosis.  We had something to work with now and we could work on getting him better.  The great thing was we had already been doing a lot of steps we needed to do.  It took us 4 years but we had an answer.  So we then began working harder.   We had one more year at Flying Colors to get ready for Kindergarten.    

Kindergarten went great! We had a wonderful year he was getting help and was really at level with his class thanks to the almost 3 years at Flying colors.  First Grade another amazing year.  We had behavioral issues here and there but the school intervention was amazing and worked with us and we were able to keep him growing academically and socially.  Second Grade was more of a challenge.  I learned quickly a teacher can make all the difference in the world.  You cannot change Colton I learned he is not moldable into a perfect peg he is his own person to get him to conform is not possible.  You need to accept his thoughts, humor and work with them.  We struggled through but he did well and progressed.  

Then Third Grade hit.  Not sure what happened it still is baffling to me.  Great teacher who truly enjoyed Colton, our OT who has seen Colton since he was 3 years old took a job in our school district, a good friend and one of our founding Board Members was his intervention specialist we had the perfect team.  Well soon after school started found out our teacher was going to have a baby and would be out in February.  So as a team we prepared we had one substitute for the year she was co-teaching so Colton would get to know her ahead a time.  But we never really got settled.  We worked together all year long and by gosh he made it through Third Grade. I quit my full time job in the process to be a more hands on mom and help him get through this year.   It has helped but it showed me this is a life long adventure we will be taking together.  As he gets older we will have new challenges to face, hopefully we will be able to put other challenges behind us.  

Oh about My Place To Be and how we got started.  I had joined a local parent support group and started hearing other parents stories and many were similar to ours.  Traveling to Columbus, Cincinnati and even Cleveland for basic services.  I thought why can't we start something here locally for families. So we began small play groups teaching social skills it was great I had several parents of neuro typical children that realized this would be great for their children as well.  So we had Peer models and we just did a weekly class.  It started to grow, our dreams began to get bigger and bigger.  My life began to change my purpose in life changed in it feels like an instant.  I wanted to do everything I could I wanted a school and more.  

I soon realized that dreams take money to fund.  So I had to slow down and take one step at a time.  So we decided at My Place to Be to focus on the Social Skills.  We lost our beautiful farm due to funding but God definitely had a plan we were able to go to our new location thanks to the Evan's Foundation in Newark.  We were granted a building and a beautiful play yard that we could build a future.  My quest to help others was going to happen.  Here we are Five years later and we are growing and able to say we are helping one family at a time.  I still have the dream of building a school but now I know what steps we have to take to get there.  Funding is number one priority we have the people ready to teach and instruct but we need the Funding first.  We will get there I know.  Thanks to all of you who have helped us get this far.  I don't know what we would do with out you.  

Love and Light

Christa Milner