A Story for Thomas

I was asked to write a story for a magazine to be published in August for the September/October issue. It's about Thomas and what our upcoming fundraiser is and what our efforts have been. I haven't sent this to them yet, but I did send it to my family. After my previous blog I have a feeling that some "other" people read that so if they are reading this.... READ this story, truly understand what is going on here. This is lifelong, every day, every second and it affects not just Thomas but all of us. Here is Thomas' Story

On March 30, 2010 Thomas Summers was diagnosed with Aspergers Syndrome, a form of Autism. For his family this meant that life would forever change. Thomas is a loving, sweet 4 year old little boy with a twin sister and a 9 year old brother. His mother decided that there should be more awareness for Autism and decided to raise money for the Autism Society of North Carolina by doing fundraisers. Right now 1 out of 110 children are diagnosed with Autism and it is four times more common in boys than girls. With the help of her friends and family they formed “Team Thomas” to walk in the upcoming Run/Walk for Autism in Raleigh on October 9 in Moore’s Square. The team got together and started going to local businesses and asking for donations for t-shirts and seeing who would allow them to do fundraisers. They were pleasantly surprised by the amount of support that was shown not only to the cause but also to the Summers family. “Team Thomas” has had a Partylite fundraiser, Chick-fil-a Spirit Night, an ongoing 31 Gifts fundraiser and they will be at three of the First Fridays on the Lawn. All of these combined were great but they all had one big one in mind. Heather Summers, Thomas’ mother, contacted Steve Raper owner of the Doghouse Grill and asked him if he would be interested in helping out. Steve ran with the idea and an enormous event was created. On September 11 from Noon-Midnight “Team Thomas” and the Doghouse Grill will have an Autism Fundraiser. Starting at Noon we will have games, face painting, the start of our silent auction, music, candy and much more! Stop in and have lunch and see what we have going on. We will have our t-shirts, lots of information to hand out, Autism Awareness bracelets, pins and magnets. The team is all there to answer questions, play and have a good time. The Easy Street Band will be there to play around 8pm until Midnight and “Team Thomas” will still be going strong. There will also be a bake sale and we would love to have the community involved. Stop by the table and sign up for the walk while you are there.
Finally, Mike and Heather would like to thank our friends and family for their love and support. We want to thank the businesses who have donated their time, effort or money to us or the Autism Society. We deeply appreciate all of the prayers and concerns from our community!
*”Autism Spectrum Disorder (ASD) refers to a group of developmental disabilities—including classic autism, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger’s Syndrome—that affect a person’s ability to understand what they see, hear, and otherwise sense. It is a brain disorder that impacts communication, social interaction, and behavior. Individuals with ASD typically have difficulty understanding verbal and nonverbal communication and learning appropriate ways of relating to other people, objects, and events. No two people with ASD are the same. As its name implies, ASD is a spectrum disorder that affects individuals differently and with varying degrees of severity. Additionally, ASD is often found in combination with other disabilities.” (Autism Society of North Carolina)

Faith

Hebrews 11:1 says Now faith is being sure of what we hope for and certain of what we do not see.

Yesterday I took Thomas for his appointment with the social worker and we discussed the fact that it seemed that aspects of his Autism may be getting worse or regressing. I knew that there were things I wasn't able to control anymore. There were parts of this that I wasn't able to help him with and I'm having a very difficult time communicating with him. He seems to have numerous meltdowns during the day that even I can't control. It becomes a very daunting and frustrating task even for me, the one person who is with him all the time. I get advice thrown at me left and right, but the reality is that he is my son and I know what is best for him. It's not herbal remedies or punishment or spanking or grounding or any of that. He needs what is best for him, he is Thomas. He is not the Autistic child next to him or a mold of someone else. He is himself. This is what I want someone to understand and believe. He is ever changing and this is what is so extremely difficult. Like the verse above.... it's not what I had hoped for, but it's what I got and I'm certain that I have faith even when I can't see it.

The outcome of the his appointment was this: We are going to start teaching him some simple sign language again. Luckily I have a friend who is a sign language interpreter and she agreed to come and work with him. Hopefully when he cannot verbally communicate then he can sign some simple wording to get out what he needs to. I also have bought him a weekly chart so that he knows what his schedule is day by day. Routine is very important for him. He has also gotten very stuck on his brother, so we will incorporate time during the day that he can play with him while not overwhelming his brother. I'm also going to get him flash cards that have feelings, moods, etc on them and attach them to a key chain so he can wear them and be able to express himself that way hopefully without screaming or hitting or throwing something. We are also supposed to check into a case manager and /or CAP worker for some help and guidance. Finally I'm supposed to finish filling out his paperwork for TEACCH. So if I didn't have anything else to do I now have many things added to my list!

I also found out today that I may (possibly) really hoping it's not, need knee surgery. I'll go next week for an MRI on it to see if there is a tear. If so then it must be repaired. Of course this will put a bump in the road with Thomas and his daily routine and schedule. I have been having so much trouble with walking, sitting on the floor, moving, getting around, etc though that I'm almost hoping they will just fix it because I don't know how long it can go on like that and with him needing so much from me!

Faith: being sure of what we hoped for and certain of what we do not see. Sometimes you just have to have a little faith, hope for the best even when you can't see what's right in front of you!

Lifes Not Always Perfect

It's been a few days, well several days since I've written anything. My mother and I took the twins to the beach. My husband and oldest son stayed here because they both had commitments that they had to keep. I really needed a break, prior to leaving my feelings had been incredibly hurt by several people and I could really feel myself losing control. Not the kind of control where you have to "be in control" but just control in general. The insurance company had gotten me, someone I thought was a friend (maybe not a close friend) had hurt me and my husband. There were probably others in a 2 week time period but that's not here or there.

So a vacation was in order and it was amazing. Thomas did very well considering we were in a new place, new people, new things. He had been to this beach house before but he was out of his normal routine and his things. He got up early every morning and at least two times a day had a severe meltdown. Sometimes it was much more...but I take what I can get so that we can survive. One day down there it rained and not just a sprinkle it down poured. We decided to take them to the aquarium and of course there was about a million other people there who had the same bright idea that we did. I could tell that this made him extremely nervous to be confined inside with such an enormous amount of people. He stayed close to either his sister or one of us. He often got very upset because someone would be in his way or he couldn't get to the glass to see. He never quite understood why people wouldn't move along after a few minutes of looking and give someone else a chance. All in all he did well there until it was time to walk to the car, walking is not his strong suit and it often results in someone carrying him. I typically carry him but can't do this much anymore. I am considering getting a stroller for him to save both of us, physically and mentally.

Since being home things have pretty much gone back to the way that they always are. Thomas is back in his routine. He wakes up about the same time every morning. He wants breakfast not long after waking up, he doesn't want his siblings to bother him, only when he approaches them. He has a need to be in control and he wants to know where we are going and what we are doing so that he can plan this out in his mind. He has to know who is going to be somewhere, if it will be a lot of people, etc. He wants to know if it will be loud or what we will do and what time we will leave. One new question now for him is what time is it? He is infatuated with these questions and you have to answer him. His twin sister is at the age of a little bit of antagonizing him. She can be quite the Diva sometimes.

Life is not always fair or perfect and if you have a child with Autism then every single day is not perfect. It's just that every single day can be a good day or a bad day. That's what they are.... you have good moments and bad moments. You have milestones that you meet and breakthroughs that you accomplish. You have victories and for us these are things that are perfect! This makes life perfect!

Seeing Red

Red tape, anger red, just red! I'm so mad at the insurance company right now I'm still shaking, screaming and crying. On Saturday I opened a 6 page letter from BCBS telling me that they were not going to cover Thomas' Occupational Therapy because they say it is "not medically necessary".  Now he had a prescription from the pediatrician for this not to mention the therapist and social worker in Greenville both said he needed it and I have documentation of that in the report for his diagnosis. BUT insurance says, NOPE he doesn't need it.

So let me just tell you why I'm so upset, so angry. This is a child who clearly is developmentally behind. I believe that his Autism is developmental. Some people believe that Autism is behavioral. For Thomas we were beginning (slowly) to do some of the fine motor skills that he lacked or had trouble with. He has trouble feeding himself, but his therapist there had made a spoon and a fork for him. They were also going to order him a special plate. They were getting ready to work on buttoning, snapping, zipping, etc. Yes these may be things that I can do with him, but I also have two other children that need me and Thomas doesn't always listen as well to me as he might to someone else. He was doing well and the progress was small, but still progress. Now, nothing, he gets nothing. Many people have said what about the school system. Yes we are going to get OT through the school, but first you have to have an IEP. We went for that last week and Thomas wouldn't or should I say couldn't understand what they were asking of him when he had to do the hearing exam. So now today we are going for a hearing test at the Dr's office. MORE MONEY! He may not be able to begin speech and OT with the school until September. He will lose a significant amount of time.

We can't pay for this out of pocket, although I don't know how much it is for OT. Also on his report and what was suggested in Greenville was double OT and double speech. So that was what I was going to do. Private and through the school. BCBS has just taken that away from him. So now when he is still lacking certain skills, when it's taking him forever to do something, when he is still so frustrated..... thanks to the insurance company for allowing a child with a diagnosis with a prescription and with a report saying what he needed to go without proper treatment!

Yes I'm seeing red and I'm so angry and upset!

Is it good enough?

Have you ever sat and wondered if everything you are doing is good enough? Lately that's all I do....  Especially yesterday which was a horrific day. I do the very best that I can on a daily basis and sometimes that goes hour by hour, minute by minute. This is not to say that other people are not doing the best that they can, I'm just talking about me.

I try very hard to get the kids out when I can. Typically that has meant the pool because we are members so I don't have to pay to get them in, they love it and I don't have to worry quite so much about them. Until recently anyway because Thomas is so wrapped up in his brother. Of course his brother has seen friends there and wants to be with them. Now I don't expect that people are going to sit and talk to me at the pool, even if they are people who know me. I've come to realize now that a lot of people sometimes shun away from us and that's ok. Yesterday we had an incident where a child at the pool took a toy out of Thomas' hand (after Thomas threw one) and threw it in the big pool. Of course to this child one bad turn deserves another, however as this child began to explain to my Autistic son that his horrible behavior deserved for that toy to be thrown in the pool was where my emotion began to run. Thomas cannot understand things like this when you tell him. To him he saw the action of the toy being taken away and my oldest son tried to come between the other child and Thomas to no avail and however was unclear on the right thing to say knowing Thomas was extremely upset and could not comprehend what this older child was saying to him. I of course made my children leave (it was time to go anyway) and was later "scolded" in an email by this parent.

I do get very emotionally involved when it comes to Thomas and most of the time I can't separate myself from that. I  am very involved and I am on a mission to give out as much information about Autism and Autism Awareness as I can. I tried very hard to get help for my son when he was 2 and no one would help me. It took me 2 years to get anyone to listen to anything I was saying and to really hear me. I'm not saying we could have fixed anything, no he would still have Autism, but maybe just maybe some of the things he has going on might not be as severe.

To the parents that think I go to far with awareness, try having your child not look you in the eye when they speak to you. Or when you are sitting at the dinner table have them tell you "don't look at me" "stop talking to me" Have your child throw a tantrum for hours on end with no stopping, nothing you can do to console them. Be in a restaurant and they must get up and jump behind their chair, run around the table or just "stim" in some way while the people around you just watch. Be in Walmart, Target, etc and he has a meltdown screaming bloody murder at the top of his lungs. It feels like at any moment the police or DSS will show up. Have him bang his head on the furniture because he just has to. Or have a 12 month old that won't talk and just grunts and is taught sign language because they can't tell you if he will ever speak, but they can't tell you why.

Those are all the reasons that I am doing this and pushing so hard and because I care, I love my son and I hope it's good enough!