Until someone told us different is a story a bit off the marketing topic. But it is a story that I feel needs to be told and since you are all some of my closest friends out here I feel that I should tell you.
It’s been bothering me since the day it happened December 20th, 2016. Some of you may already know but I still need to write about it because I need to raise some awareness here.
In a couple days, I will be walking into my son’s school to start a small war. For 6 years he has gone to this school and he is now 16 and he has Autism. If you don’t know what Autism is then you should find out because now 1 in every 36 kids are being diagnosed with it. When our boy was diagnosed he was 3 years old and we had found that something wasn’t right with him when he was about 15 months old.
Parker Jay Meyers, he was born. Beautiful red hair and blue eyes that have since changed to green. He did seem a little different than his older brother but he was still developing normal and he even started to talk. Then one day it all went away and he wasn’t the Parker he was the day before.
So we loved him and raised him and did everything we could to make him happy and safe. My husband and I left our career that we were at for 11 years to accommodate the things we needed to do for Parker. He needed special attention and we knew our lives would never be the same again.
We had therapists coming round the clock and it made it difficult to work the hours we had so my husband started another job that paid the money we both made together. The people there weren’t nice to him and always made sure he didn’t meet his quota and he got laid off and the management felt bad for him and offered him a job mopping the floors. Not quite the career he was looking for so he took unemployment instead and started going to truck driving school. I, of course, was home taking care of everything by now. Having to leave the job I really loved. Where we met and got married and started our family.
Now my husband was a truck driver over the road and was never home. A very hard life to live but we did it for our boys it’s the only way we knew how. Then finally one day I came up with an idea that turned into a dream come true. We opened up a Cyber Cafe in Philadelphia PA. It was really cool and a great place to be. People came to have their birthday parties there and we held tournaments were kids came and showed off their video game skills. The recession took it away from us along with our zoning lawyer that we paid a lot of money for that did nothing for us that we later sued and won our money back.
So this time we were in the Philadelphia school district with our sons and not the greatest place to go to school. But before that, they were in the Camden school district and we thought we were making a better move. I always wanted Parker to be in the school he is at now. Everything was great there until now.
We changed our lives because we knew that we would need to have services for Parker that would take up all our time but after early intervention we got none. We applied many times and made many phone calls as I watched all the families I knew around me get all kinds of services in their homes. Why did our son always fall through the cracks? We even one time applied for Autism Camp and were accepted. We were so looking forward to Parker going but then we got a letter with regret that the camp was closing.
So here we go again another year of nothing for our son. But we defeated the odds and just kept pushing and raising our sons the best way we could. Moving from place to place to find them the right schools for them. We never left in the middle of a school year and we were always moving right in the middle of the summer.
I could go on forever telling you all the things we did for them. We always took them places and as Parker grew up he got more aggressive. It was hard to deal with because he would always hurt us and when we went out somewhere and he was frustrated or exhausted he would sometimes pinch a stranger. Thank God they were understanding. We were always afraid that we would find someone that was not so happy about being abused by my son.
He used to be so bad that we were uninvited to holiday dinners with family because they were afraid he may hurt their children. We always gave up a lot and couldn’t do what many other people got to do. I would always have to imagine the worst thing that could happen somewhere if my son were to run from us or hurt another stranger.
We always tried to do things and would have the best time we could until it was time to wrap it up because Parker was no longer happy. We never had a normal life but we were happy with it and we strived every day to make our lives better.
My son goes through different phases of symptoms and we teach him how to get through them any way we can. Always still applying for services and never ever getting them. Last year we applied again because his school assured us that this time they’d make sure he would get them. Then he was 14. My husband and I sat there for hours filling out a book of information and we were happy to do it. Some of his problems were affecting all of us and we really needed someone to help us figure out why he was doing all this.
After we lost our store and my husband worked a few different jobs he found a good one in Property Preservation. Working for companies that took care of foreclosed homes for the banks until they were sold. Something different and he made good money and someone trusted him to take care of a county and hire people to help him with the jobs. They trusted him with a credit card and soon gave him a company van and a raise. He was at this job for years while we moved our sons to better schools. To the schools, they are at now.
We had support from our families and they helped in many different ways even trying to babysit sometimes so we could go out and have a date night. We were always with our kids and we never went anywhere without them. It was difficult for them to watch him for the fear of him leaving the house which he was very good at doing. He was quick and slick and he always knew where you hid the key. It was a mother’s worst nightmare come true. I could go on forever writing about the horror stories that happened through the years. Maybe I will write about this later. Because what I am talking about here is why after all these years and all this time do you want to now come here and mess up our lives.
There are many people out there including the people taking care of our kids that know not a thing about what they are dealing with and I got that confirmed to me at a speech group that I attended a couple weeks ago. Without even wanting to tell me she said to me that they are just learning themselves about how to communicate with these kids and they really don’t know. Oh really then. How can you then tell me how I should communicate with my son when you don’t know yourselves.
My son wants to talk and you are teaching him how to talk with cards and now an IPAD that has a program that will talk for him. He is very good at using it but now it is broke and he without it.
When our son was 10 he was released from individual speech therapy because the speech teacher said in his opinion if a child doesn’t speak by the age of 10 then he won’t but I knew he would and his teacher that I thank God for, got to hear him say “YES IT DOES” when he came to visit us at our new house in NJ.
So his school has also taken away occupational therapy and they tell me he doesn’t need it but I say he does because I am having a hard time breaking him of some of his symptoms. When he had occupational therapy it was easier to manage him and redirect him. We did an excellent job bringing him out of a lot of his behaviors. But this one has been hard to beat. He likes the sensation of having water on his thighs. He will dump water all over him and he used to do this in the bathroom with no clothes on and drenching the floors with inches of water. Eventually ruining our floors. He would take paper towels and wet them and throw them at the walls and the shower and they would stick there like when we used to throw paper towels at the ceiling in school.
I had many meetings at school trying to solve these problems and then they mentioned getting services. Again I said I will try but very doubtful we would get them. We are always being denied for some reason. We sat there for hours filling out these forms and then had to rush home as we saw our son’s bus leaving school while we were still on the phone with the company we were applying for services. But we thought it was worth it.
Of course, once again our services were denied because of paperwork that was needed and I was assured would be taken care of. The summer comes and I get another letter stating the services were denied again. This time we have another meeting and I said we don’t need the services now I am not trying again. We are doing just fine all this time without them. The Principal said she was in awe hearing me talk about the ways I help my son and deal with his everyday challenge. It made me feel good to hear that from her and so did it my husband.
We were good parents even though we gave ourselves no credit. Then came the day someone told us different. A brand new social worker that knew nothing about us except for a few phone calls where we discussed Parkers new problem we were working through and just about disappeared until she decided to pick up the phone and report us for abuse and neglect because my son was still pouring water on himself now with clothes on and was damaging the color on his skin. I could not stop him no matter how much I tried and I would stand there forever making him change his clothes only to just do it again.
I was constantly taking him to the doctor and using lotion on him and so was the nurse at the school and she would call to tell me. Then he started piling blankets and sheets on the bed and would wet them all standing right in front of me. There was nothing I could do about it and knew it was just a phase taking a little longer to grow out of.
Now my main point here is no one in the world knows much about Autism except the kids who have it themselves and the parents who raise them every day. You say you want to help me and then I am standing there explaining to two ladies in my house why they should not be there in the first place. How embarrassing and demeaning. Now you’re going to come to my house and hurt my family.
They made me take my son to an emergency room on the coldest night of the season where there were teenagers lying there on their mothers and every infectious disease door closed with people in it. We were all the way down in the last room and were there for 5 and a half hours to have the doctor say to me “now why are you here”? How embarrassing bringing my son with a little bit of red on his skin from something he is doing to himself. The Doctor needed to write a note for us that says that this is something Parker was doing to himself. The Doctor was amazed and many of them usually are when they send my son and many others to the doctors for no reason at all just because they are holding their ears too much in school. Or asked your kid if they weren’t feeling well. They would make us take them to the doctors because they didn’t understand Autism. They would swear your kid had an ear infection and would not let them back into school. These are people taking care of our kids and know nothing about what makes them tick.
We are being questioned as parents although I was told the abuse and neglect case is dropped but they want to come and help me with some family management services. Are you serious?
We own a company we have for 2 years and we manage 6 workers that do services for us. We pay payroll. We do the books. We put orders in the computer to the companies. We manage the routes and the workers that woke up on the wrong side of the bed.
We are always working to better ourselves and raise our family in the best way we know how. I also work here online and it does take some time to do this stuff and I am still keeping up my house and taking care of business everywhere else. I am active at school and I participate. Our social worker at the time we were starting our business got us a donation of 2000 dollars at Christmas so we could give our kids a nice Christmas and help us with some cash for food and gas while we established our business that took off fast.
Now a new social worker came to town and she is barely older than my niece and I doubt she even has any children. She believed after the hours we talked that we were warranted as parents of abuse and neglect. Someone that knows nothing about us and only spoke to me on the phone 4 times in 3 months.
While we were questioned and demeaned by the worst word anyone in NJ wants to hear “DYFS”, we were humiliated for having a child who is different. Making my 17 yr old get up out of bed to talk to them. He was taking an after school nap because he works hard. He is a straight A+ student in computer science and has since been writing essays to get into colleges that he had just applied for 2 days before. He was also nominated one year to attend the National Young Leaders State Conference in DC where he would have worked with senators and the President. Something we couldn’t afford to send him at the time. He volunteered his summers at a program to help others like school something he struggled with until we were able to get him in there in 7th grade. He was a very well behaved boy who was always picked on and beat up in school until he came to Delsea Regional in Franklinville NJ. He is graduating this year. He was just accepted to Rowan College this week.
Yes, my son will now get his services since the new Social Worker found the papers that I told her we already filled out laying on the desk where the other social worker left them when she had to leave for family emergencies. Two days before DYFS came to our door she told me that she sees where we filled out the paperwork. After DYFS came to my house I called a friend with an Autistic boy who also had DYFS called on them and their son is now 17. I mean really. I then found that another friend I left when I moved had DYFS called on her 4 times. This is getting a bit ridiculous.
So a therapist came to the house and she said that she would be in contact with us for who would be coming to our house for Parker. But who is coming first? The family management services on Thursday at 4:30. Right in the middle of the time we are taking our check to the bank. So this will all be a distraction for us and I hope that all this will not bring down us. Not the services for Parker because we welcome them but I do believe that school needs to put him back in occupational therapy and one on one speech because he is ready to talk and I will give you a few links to see if you want.
I guess I could go on for hours and I am sure you probably know us by now. I am sure you can now know what it’s like to walk in our shoes. We know our son better than anyone does and they all say they are just learning themselves. So who are you to tell us any different. I can’t wait to face that lady at school on Wednesday that I told already that she betrayed me and that I will never trust telling her another thing about me or my son. I thought you were there to work with me in making my child learn to live our society which time is now running out because his father and I aren’t getting any younger. I can’t burden his brother with caring for him because he may have his own family by then to care for.
I have been working out here online for a long time and when those people came to my house they made me feel different like I was wasting my time out here when I should be doing other things. But what I really need to do is forget about those feelings and just learn how to make this all work so we can be able to make sure our son is safe when we are gone.
Thanks for reading my long story and if you interested in knowing more let me know and I will write some more here about us. I could write a book.