The day someone told us differently. A story by Dawn Meyers a mother of Autism.
The day you find out you are going to have a baby is like finding out you are going to London. You are excited and can’t wait to see how wonderful it is going to be.
When you board the flight you are so happy and ready for whatever you are about to learn. What you are about to see. The many twists and turns that it will bring.
When the plane lands in Holland instead of London you are a bit confused and scared. This is not where you are supposed to be. What about the Eifel Tower and the Louvre. Big Ben and the Colleseum.
Now what will I see? What will I learn about the place that I have landed? I learned that Holland isn’t such a bad place after all. It is beautiful and has windmills and flowers. It is just a great place you never knew about. A place you never knew you could love. A place you never knew you wanted to be.
We were very happy to welcome our son to the World.
He was our second boy Parker. He was a beautiful baby. He was born with a full head of red hair. He was developing normally. Or so we thought he was. His big brother Hayden loved him so much and couldn’t wait to teach him everything he knew. His brother is 20 months older than him. Parker did a few incredible things. He sat up in my arms at 2 days old. He could hold his own bottle and pick up his pacifier and find his own mouth. They both would sleep with their eyes open. He never crawled he just walked.
So let’s fast forward to January 2003 the day we found out our boy has Autism. How devastating it was. Although I did know something had to be wrong. Parker had changed so much it seemed like someone had stolen my son and replaced him with a soulless boy.
By the time we knew what was happening to us we had therapists coming to our house to try and cure my son of his autism symptoms. They wouldn’t let my older son engage in the sessions and this proved to be devastating to their relationship. Hayden grew up losing interest in his brother. All he did was embarrass him and wreck his stuff.
The next thing we knew Early Intervention was over and we were sending our son on a school bus the day he turned 3. The services are now over and I was sad and a little relieved. I didn’t understand what was going on when I saw the people that were supposed to help me decided they wanted to hurt me.
My Father lived with us at the time and for some reason one of the therapists decided to get in my personal business and told me I had some issues that needed to be addressed and sent a social worker to my house to meet with me. I told the social worker that came to my house that the only issue that I had was that my life was just turned upside down. I just found out my son has Autism and my husband and I was going to have to leave an 11-year career, where we met and were married and had both our babies.
It was devastating, to say the least, and for someone to tell us we were going to need some issues fixed. Well the therapist apologized for stepping over her boundaries and soon we were done with those services
Now it’s time for a school like I said and my son was riding a bus every day starting at the age of 3. He was in the public school system and we were praying that we were sending him to the right place. It was in Camden New Jersey. Not the greatest town but when we would go visit the school everyone there was so fond of Parker. We were happy with his teacher and she and I became pretty good friends. Her family attended Autism Walks with us and I was sad when it was time to say goodbye to her.
Through this whole time, I was trying hard to get more services for him at home. Like everyone was telling me they were getting for their kids. Free of charge through the State. I had to apply for other services too and it was just the hardest thing I ever had to do in my life. Constantly on the phone with organizations trying to get the services that were needed. This was all just to learn to talk and just be the social boy that he should be. To learn to play with toys correctly.
I joined support groups and attended conferences and met Mothers with the same problem as I had. We all wanted to find the answers to what was happening to our kids. What gave them this and how can we cure it. All these Moms had their own opinions on how to raise a kid with Autism.
Anywhere we went we would see someone that would run right up to us and tell us how beautiful our boy was. How they couldn’t take their eyes off of him. I would also have moms tell me what to do to make him talk. How to potty train him and just about anything they were probably doing unsuccessful themselves.
I never knew the horror that awaited me. Soon I was begging for help because my son has now just learned to climb out onto his roof. He really wanted to go somewhere and we had to learn how we could lock him in his room. He was slick and he was quick and he would be out of your sight in just a second. The scariest nightmare a mother could experience when she turns and finds her son has just snuck out of the house.
We moved from this place and hoped that where we were we could keep him safe. We found out a few more times that we were wrong. His school here was ok except it wasn’t the school I really wanted him in. I wanted to go to a special school that just opened in NJ and it was not in my county or my district. I was denied my son attending.
We are onto his third school now and the teachers and aides were such wonderful people. They actually potty trained my son at 9 years old. It is not like we had not tried to do it ourselves from a very early age. We trained his brother before he was 2. We had bribed him with Thomas Trains and it worked. Parker however was a lot harder because he didnt care what the reward was.
So today was a terrible day. It was a day where I was told by the State of New Jersey that I am considered a neglective parent. I don’t even know why. He is almost 16 and he is just fine. We have all done a great job raising him and keeping him safe. Just because of an autistic stim I was made to take my son to the emergency room tonight.
I want to know when people are going to realize what autism is and what it does to the person who has it and the family that raises it. Just because I have been rejected by the system so many times and not have gotten services for my son since early intervention was over since the age of 3.
I have been asking for help so many times and every time I called someone I was made to feel like a fool for calling. No one knows what it is like to raise someone with autism unless you are doing it already.
I have always tried to be the advocate type and help others like me. Give them someone to talk to and ask questions to confused and scared moms like me. Not that I ever knew where to turn I would just work through the issues with our son and move onto the next one.
His new thing is liking to have the sensation of being wet so he pours water all over himself. He pours water on his pants and he refuses to take them off. I have a very hard time getting him to understand that is why his skin is hurting him and we put cream on all the time. His school nurse will call and say she had to put cream on him today and I say I can’t understand why he does this when he knows it hurts him.
The school who is supposed to be helping him and helping us understand how to live with him. How to understand him has failed us. I am remembering things all the time now where I gladly signed up to see his speech teacher, to learn how to use his communication device. Well, I saw her once and said I’ll come back next week and the day of the appointment she called and canceled and said you know you don’t have to come every week. Maybe just once every couple months. Now you made me feel like I was a bother even though you were supposed to be helping me learn how to understand my son.
Now you blame me for not trying hard enough to get other services for him just because you say so. Now you say so. I have only been trying since he was 3. Deny Deny Deny. All because someone at the school did not do their job.
I have an update to this blog. I have a few others written about this too. But the one I just did is a video series.
So we figured out since this day that my son likes the weight of the water and not the actual water. We are still being investigated as neglective parents even though we were told the case would be dropped. So I am thinking of getting a lawyer to deal with his school. If you are really interested in the full story.
Be active, not reactive is my new line that I use now. First, it was and we need DYFS called on us. If you don’t know what DYFS is, it is your Child Services. It is where someone believes that you are hurting your children somehow and need someone to come check on you.
On December 20th, 2016 two women knocked on our door and said they were from DYFS and they were here to talk to us about Parker. Our son who turned 16 6 days after they showed up at our door.
He has a sensory issue that we found out finally what was going on and I guess it took DYFS for us to hurry up and figure it out. But I still am insulted and feel very betrayed. The doctor I spoke to the other day was also quite livid. She wants to help us in our situation because it is not fair.
When our son was born in 2000 Autism was really never heard of. We found out in January 2003 that our lives would never be the same again. We were raising a very special child that we had no idea what was in store for us. I will not go too much off of topic here. I will write later and I am thinking about writing a book sometime in the future.
The story needs to be told. It is eating me up inside and consuming my very being.
We are not overwhelmed nor are we regretful. Nor do I ever think we were abusive or neglectful.
Anyone who knows me would tell you the kind of mother I am. I have 2 very good boys and I have even been told that more than once. I was once approached at a restaurant, a man came to my table and leaned down and said to me, “I just wanted to tell you what well-behaved children you have.” The way that made me feel. It was amazing to hear.
I don’t strive for the mom of the year award nor do I ever say my son has Autism please help me. My husband and I have made many sacrifices and changes in our lives to accommodate the needs and the safety of our two boys. Although we have been blessed to have some financial help sometimes but the support physically was hard to do when Parker started to grow older.
My husband and I could not wait to get our sons into the best schools we could find. We always made sure that when one thing wasn’t working we would find something that was. We were so happy to see Parker get into the school of our dreams. We couldn’t get him in when he was 3 so we had to deal with less than what we wanted for him. We finally got him in when he was 10. It is a school that he will attend until he is 21 so that is a big help for us.
We loved the school and everyone there were very supportive. We attended every meeting and just about every fundraiser and everytime my son had a classroom or school event we were there to show support. My mom and dad even went there for breakfast with him. We showed up for everything. I went to group walks at the mall and parent support meetings at the school. We would even drive around all night to make sure my son had the color shirt he needed to wear for events they had in school. This happened several times a year. We are very supportive parents and one year we had a financial storm and someone from school donated 2000 dollars to us for Christmas. It was all in Walmart cards and a few Gas cards too. I was shaking so bad I dropped everyone. It was a blessing and it helped us a lot while we started our own business in 2015.
I was even told by the Vice Principal that she was in awe of the way I spoke about my son and how I cared for him. Because I am really into it. So much so that family was concerned that Hayden may be feeling a little left out. Hayden is fine and he always has been because he would always make sure he was the center of attention. We understood why.
He had a brother that would not play with him. What bothered us about Early Intervention is they really never would include his brother in the therapy and anytime he wanted to be involved they would tell him no Hayden this is for Parker.
So now to the story because I am now getting off the main subject but when I write I always remember important things in our lives that bring us to the point we are at right now. A point where Parker is 16 and Hayden will be 18 in 5 days.
On December 20th 2016 we heard a knock at the back door which was strange because we don’t even use that door. Sometimes people will make a mistake and knock on it but no one that usually comes here like the people that we know.
When I went outside to see who it was I saw two women walking down the stairs. I was smiling and very cheerful and I said, “Hi may I help you”? They said, “We are from DCF.” The Department of Children and Families. I was so surprised to see them there. I couldn’t understand why they would be standing on my lawn asking to come in. I thought they said my neighbors called on me and it took a second to sink in after I said why would my neighbors call DCF on me. We are the quietest family and don’t bother a soul here. But then she said, “I am saying can we go inside because of the nosey neighbors.”
My husband was working on the computer getting his work orders uploaded to the companies we do work for. We own our own business and it’s coming along well. It works out great that we can work together and both be home for our children. My husband does go out to work sometimes but, for the most part, he is here to help with anything that needs to be done.
So now they are stepping inside the house that didn’t look that bad I didn’t think. I was folding blankets and they were on the bed and then there was the mess on Parker’s table and I was soaking some dishes. I usually wait till the kids get home and while Hayden’s telling me about his day I will stand there and do the dishes or I will do them when I am on the phone with my mother or my mother-in-law who I talk to every day. I like to talk on the phone and clean because it seems so much less effortless and goes faster. I even have a few friends that love to talk to me because I get them moving to clean their house too. If you can do work while you’re on the phone why wouldn’t you, it saves a lot of time. The other time I am here working on my business with my husband or studying marketing which I have been doing for six years, running errands and taking care of the bills. Also making our home the safest it can be for our kids.
Now they are telling us they need to talk to my husband and me and who else is here? We said our son Hayden and they said well we will need to talk to him too. It was scary and I was so upset I thought they were coming to take my kids away. But why? I see so many families go through stuff like this and it is not necessary because they are all just working families taking care of their children. 1 day after they were here we saw a 23-second video on Facebook of a man beating the crap out of his 3-year-old girl. It was so horrifying and we all need DCF at our house while other people get away with stuff like that. I never have laid a hand on my kids.
I was nervous but I remained calm and answered all of their questions and they were wrong. LOL. Well, some of them, like when she asked when was the last time you took this boy to a doctor. His primary doctor was so far away so anytime we needed to take him somewhere we took him to urgent care. I would be in contact with his primary when he was not feeling well and they would advise me to keep an eye on him and take him to the hospital if needed. Back in December 2013, Parker spent a week in Children’s Hospital from something he caught from school. I never send my kids to school sick and what is amazing is my kids never really get sick. If they do they go down hard and need antibiotics to get rid of what they got.
Parker has had a hard time with the medical field. His doctors knew it too and would never do anything traumatic to him. Just the other day his doctor wouldn’t even pull up Parkers pant leg just because Parker told him NO. When we took Parker on non sick visits or to get his shots it got scary because he would attack patients in the waiting room. When he was sick and we took him to urgent care or the hospital most times he would sit and be good because he wasn’t well.
We had times where we needed 5 people to hold him down so anything he got done he needed to be scheduled for sedation. So as far as dentists you could never find one that would take a boy with Autism and his doctor would advise me on the things I could do for him until there would be more dentists that would help him. Insurance companies would not approve half the things that were needed to accommodate the needs of a child with autism.
After having many letters sent home to me from schools saying no apparent dental problems. I couldn’t understand why because he would never open his mouth for anyone. I took him to a family dentist on October 29th, 2016 that was equipped to take care of kids with autism. He couldn’t even get him to open his mouth but it was enough to tell he needed some attention. So he referred me to a surgeon in New Jersey. We traveled to this office that was 2 and a half hours away from us so he thought it would be better to schedule us closer. Well, the surgeon wasn’t taking new patients and I decided to call the school social worker for some help. She sent me home a paper that didn’t help me either. I did not report this to her I just went about my questions to others for help. I even called our family dentist and asked if they could talk to the surgeon and fit him in, please. He said we would be ok to keep looking and to call the number on the back of his medical card they will be able to help. No, they don’t help. No one understands autism and what it needs.
I did my crying and my bitching and I always fought for my son and would never win. It got tiring to keep hearing No. I would give up and then try again next year. I saw so many families getting in-home services that would help their kids with all the extra services they needed. I needed lots of help back then and would have welcomed it at anytime they said Yes. But it was always No and I didn’t have the money to pay for these services myself. We are working every day to make sure that when he is older he will be able to go to day programs or get an aid at home to make sure he gets everything he needs. But his needs for now at home are being met. He is a very happy boy and is in no danger of harm.
We are working every day to make sure that when he is older he will be able to go to day programs or get an aid at home to make sure he gets everything he needs. But his needs for now at home are being met. He is a very happy boy and is in no danger of harm.
So back to the scary stuff that was happening to us. They questioned us like we were the worst people in the world. They said they saw Parker in school and he has a skin rash and they wanted us to take him to the hospital that night and wanted proof from the doctor that the skin rash he had was from, something he was doing to himself. Something we knew was not our fault but we were trying real hard to figure it out. A couple years ago my son started an autistic stimulation behavior where he would pour water on his shorts and would wear them. We tried to get him to stop but our place was becoming a water park. There were puddles to clean up all the time. We talked to his teacher and therapists trying to figure out what was going on. I took some of the advice from a social worker that was very good to us. She told me to take him out and let him pick out a pair of pajama pants and tell him to wear them. I did that and then he was soon soaking the entire pair of pants and wearing them.
Now he was wearing a pair of lounge pants and two pairs of shorts and this started to irritate his skin sometimes. The more he wore them the worse it was. I was using my skin care Renew I buy from my marketing company Melaleuca. It is the best skin care product to use and I was told this by his doctor the other day to use only that and bottles and bottles of it. I knew I was doing the right thing and I was advised all the time from other people to use other things. The school nurse, therapists, and social workers and even friends and strangers. But the doctors told me to keep doing what I am doing. One time an in-home therapist told us to use coconut cooking oil. It would clear it right up so I went right out and got it and used it that weekend and when Parker got to school on Monday we got a call from the nurse. I told her about the suggestion I got. I am a little upset at myself for listening to others just because they have a degree. I sometimes think we need to be the ones in the schools teaching the children. We are the ones that live it every day. We do know a lot more about our kids than anyone else does. But now I am being watched and someone gives me some really bad advice. I really don’t need that.
It really bothers me when people act like I have no clue what I am doing when in fact the interference of others is making everything different. Harder to take care of and figure out. As time went on I would talk to his social worker often and we decided that we would try for in-home services again. We spent 4 hours filling out the application and got a letter of denial again. This was because there was some paperwork missing from the school. I was told all would be taken care of but then I got another letter in July saying my case was closed. I called my district manager and he was out on leave and my social worker was too and I never got help with it ever again. So at the next meeting with the vice principal there I said I would just keep trying to help him stop this and I was good. We had just started our own company and we needed to concentrate on that too. So everyone was ok with it and I was fine because taking care of my son is never a bother and always a pleasure.
Soon I found out that they took away his occupational therapy where he would go to the sensory room and use the squeeze machine for compression and squeezing which is something he needs daily. I was approached by a few aids that said to me that they thought what he was doing was sensory. We believed that also but could get no one to listen to us. I wanted them to give back his occupational therapy. They would not. They said he don’t need it.
I don’t see how a 14-year-old who has severe autism and can’t speak doesn’t need occupational therapy. But what do I know I am not a therapist, am I?
So on that day December 20th, 2016 when DCF was standing in our living room questioning us on how we discipline our children. When it was time to see our son Hayden they had to get him out of bed. They were not happy that he was sleeping in the afternoon, She said to me “afternoon nap”? I said yes he has been working hard in school. He is a computer science major and just applied for Rowan College 2 days ago himself and was up late every night writing scholarship essays. He is a straight “A” to “A+” student in computer science and he is also an “A” student in Trig. But they still got him up and asked him if he or his parents do drugs or alcohol or is there fighting arguing or domestic abuse, weapons. When they left the room they told him to clean it.
They went through our fridge and freezer our cabinets and made us flush our toilets. We also had to show hot running water.
When they left here they said if they could charge us with abuse and neglect and told us the tiers of abuse and neglect that we could be charged with. We were under investigation and to just follow the family plan and we should be fine. The plan consisted of taking Parker to the hospital for his rash and to apply for health care for him. We had just lost it prior for owning our own business and it’s hard to prove our financial situation. We were working on it. We hear all the time that no matter what my son should have insurance and it should have nothing to do with our income. They also told us we needed to apply for in-home services after we got insurance. We did tell them we made to much money to apply for free healthcare and we didn’t make enough to pay for it. We were advised to go to social services and say we make nothing and get food stamps while we were at it because our names weren’t on the company and they wouldn’t be able to tell we owned it. I would never do that ever. That is fraud and I don’t do stuff like that.
So we took Parker to the hospital that night. The coldest night of the season. You couldn’t stand outside for a second without it hurting your skin and it hurt to breathe because the cold air filling your lungs really hurt. But I did what was asked of me and the place was packed with very sick teens laying on their moms. As we walked down the hall to the room to see the doctor all the infectious disease doors were closed. There were people in them. A man with his legs hanging over the rails of the bed and no pants under his hospital gown. What a sight. We were there till after midnight after arriving around 7 pm. Everything was moving until we got back to one of the 2 open rooms in the place. Then we sat there and sat there until finally being back in that room for 2 and a half hours my son started to get very upset. I am not being mean when I say he didn’t have to be there only because I already take him regularly to urgent care for his rash since the school nurse calls me often about it and I would tell her I would take him to urgent care. I always got the same reaction from the doctors. They would shake their heads. They knew this was a sensory behavior and they didn’t understand why the school wasn’t helping me. They were pointing fingers at me and telling me I needed help at home and it wasn’t like I wasn’t trying to get it. That year I decided not to. I thought things were getting a lot better.
That was a very sad night. If someone is so worried about my son then you should think about what he would go through sitting at a busy hospital all night.
That year I decided not to. I thought things were getting a lot better. My son wasn’t getting as mad anymore about not being able to talk to us. He had a device now that he could tell us things. It is really good to have and I am always working on teaching him important words. He is getting much better at really wanting to talk and better at pronouncing words. He is starting to understand when to use them. He doesn’t use that many yet but one day at a time and it is really working.
He is very smart and we teach him a lot and he has a gift we all know nothing about. He can use Google Maps and find anywhere he used to live or go to school and navigate right over the Walt Whitman Bridge and knows exactly where he is going. It’s a beautiful sight to see.
This is all happening to us now and it is making it harder to concentrate on what is really important. The thing is the very same people you work with and trust with your child pick up the phone and call DCF on you. Then when you tell them they are wrong they call DCF on you again. Then when you call a lawyer and the lady at the referral service that is just supposed to find you a lawyer tells you that what you have just told her for the past half hour was only your opinion. Yes, I stood up for myself and told the social worker what I really thought of what she did to me. But it didn’t help at all.
We scheduled a meeting with the school, on January 18th and I wanted everyone that had anything to do with Parker to be there. The principals., district case managers, therapists, the teacher, and the social worker I figured you all called DCF on me the least I could do was get an answer as to why. You all know that it wasn’t about abuse and neglect at least that was what we were told when we went to Parker’s Holiday Party. We were told by the social worker that helped us one year, that she marched right up to them and asked them what this was about and she said they told her that it wasn’t about abuse or neglect it was about getting the in-home services.
The ones I have been trying to get all his life when it started to get dangerous to take him out places. When he started to sneak out of the house in the night and a couple times right in front of 8 adults that knew we all couldn’t take our eye off him. That’s when I wanted your help. I needed your help so I could sleep at night. There weren’t alarms back then that would let me know when my door was opening. When you couldn’t run out on a simple 5-minute errand because when you got home your child would fall apart because they didn’t go where they thought they were going. You couldn’t take our kid anywhere and stand in line because he would attack strangers around us. We couldn’t go many places without fear of him hurting someone. We would get wrecked by him trying to calm him down. It wasn’t always like this. We would go anywhere and everywhere. Parker was always at all the happening places. We took him and his brother everywhere. To the shore, the zoo, the aquarium, amusement parks, Longwood Gardens, the park, movies, bowling, families houses for visits. Not to mention we went to a fireworks show for the 4th of July and took them to a Christmas walk thru every year. We go to eat and we are always having some kind of fun. Even at home, they have lots of stuff to keep them busy and lots of technology which is good for both of them. Hayden will now be a computer scientist and Parker will be doing something with the computer that’s for sure. Parker would fix the teachers computers at school; since he was 3. That’s no lie.
At the Holiday Party, we got to meet the social worker that called DCF on us. The one I have been talking to since September 2016 when she first introduced herself to me. We would laugh on the phone about all the things Parker would put me through since now the advice I was getting from everyone to try to get Parker to stop what he was doing was getting harder and harder to control. But it never bothered me to work with trying to stop it and when it got colder out and we weren’t going for walks as much Parker was wearing the pants a lot more. So he was getting a little redder than normal and I know it had to hurt him and even though I was using the cream on him it didn’t matter too much.
Now the social worker started to talk to me about the services and I was honest and told her the last thing that happened to us and we were denied services all those years and I am ok since no one wants to give me services I’ve been doing it myself. I know there are services that are free so why should I have to pay for them. But I believe we are doing a very good job taking care of him.
By the way, the letter we got from DCF said we were being investigated for abuse and neglect. We didn’t get this letter until after we had DCF tell us they were closing our case for being so cooperative and we were doing everything they asked of us. We called Mobile Response to get the services started. They said they applied for our insurance and we were approved but it was only temporary.
I know it’s a long story and I should have been telling it already since it is March 26th, 2017 and DCF is still around. To our relief, the letter stated that they did not find abuse or neglect after their investigation. We knew they couldn’t but it doesn’t mean they wouldn’t. How many people are on death row that doesn’t deserve to be there? But they do say the incident was Not Established which means there was still the risk of harm and they will close the case when are children are safe.
The day of the meeting we walked in and saw only the teacher, the social worker, and 3 therapists. One was the occupational therapist that don’t even work with him and I don’t think she ever did. I don’t understand how they can’t see that what he is doing is sensory. They told me in that meeting that what he was doing was attention getting behavior and he was doing it to get my attention. I said I didn’t understand what they were talking about because my son gets lots of attention. More than any kid I know. They said he wants more. I asked them about why he turns on every light in the house when we are asleep and why he puts lots of blankets in bed with him at night. They said all attention. They asked if I turned all the lights out when I saw it and I said yes of course. My electric bill is bad enough. They said this is attention. He knows you are turning out the lights. I said he is asleep I hear him snoring and they said you don’t know that for sure. They said the blankets were for attention even if its negative. I don’t get mad over it. That is part of my life. Something I have to do every day and I don’t complain. It was my problem I dealt with every day cleaning up after Parker and most times it was not an easy task. I was washing blankets every day and my electric bill was sky high. Not to mention they taught Parker to run a washer when he was 13 so now anytime the cycle stops or he sees it is not on he turns on a laundry cycle or two daily.
So when I tell them I got Mobile Response to come and so far it hasn’t been about Parker. All they do is ask me about myself. What kind of mother I am and what is the day in the life of Dawn Meyers. How does Dawn Meyers feel about being the mother of a disabled child? OMG. This is not about me this is about Parker. But anyhow the people in that room turned out to be the very people that called DCF on us.
They told us to tell the people that come to the house that Parker is so bad and attacks us so much we fear for our lives and his too. They said we have to tell them he is so much worse than he is so we can get all the services he needs. I told them if we said that they would take him away from us and they said no they wouldn’t but if they did take him to crisis for a couple days it wouldn’t be so bad. Are you serious? Besides the time in the hospital, Parker has never been away from us a single night. Time in the hospital that was very traumatic for all of us and I know he does not deserve to be taken away to a crisis center.
I told them I believed what he is doing is sensory and the occupational therapist said do you have a Doctors script for that. So I got one. Then we were sent home a letter telling us that since they saw no behaviors in school they were not going to give him occupational therapy at school and gave me a sheet of paper to look up some outpatient occupational services. During his IEP meeting on February 27th, 2017 the occupational therapist sat in on the meeting. Even though she had nothing to do with him anymore. But she was one of the women that decided we were abusive and neglective to Parker. I asked if she was with him in the Occupational Therapy room with him when he got the squeeze machine. I also noticed the decrease in the use of the sensory room was also an increase in weight gain because that year we had to buy all new clothes for him. The teacher was telling us his clothes were too tight and the bus drivers said they had to get a seatbelt extension for him. He was even excluded from going on class trips because the seat belt didn’t fit him. We weren’t doing anything different at home except we were walking more trying to keep his weight down. We had no idea what the heck was happening here.
So please now that we figured out that he liked the weight of his pants and not the water on his pants we now know that this is sensory. Can we please at least try to get him in the squeeze machine a couple times a week she said he is welcome to use the room anytime he wanted? The letter I got the other day says the room can be used on an as needed basis.
I have been in constant contact with the DCF intake worker and everything was going great. She would come and ask her questions that she has to. The ones that get you upset. When they are asking your son who is almost 18 and had been such a great boy. Giving up his summers to volunteer at school, with a program that helped kids like school. Then went straight to Marching Band. While maintaining excellent grades and a great attendance record. He even went a year or two without missing a day. He was nominated by his science teacher one year for The National Young Leaders State Conference where he would work with the President and Senators. Something we could not afford to do. This is his graduation year. His year of getting ready for college. Taking lots of tests and filling out applications. Going on his Senior trip to Disney in April.
He says he feels violated and like his feelings don’t matter. He doesn’t understand why they always have to ask him these questions about drugs and alcohol, domestic abuse, fighting and arguing and last time he was asked if there was any police activity that weekend. They have to look in his room every time they come and when he is busy it gets a little messy and he gets embarrassed especially when he was told to clean it the first time DCF was there.
If you don’t know me you may think what I am saying is just my opinion. Please visit my Youtube Channel Parkersmom215 and you will see for yourself. My son is happy and he loves his family. My entire family is disheartened over this situation and I am trying to find someone that can help me. I am told by many that I should be taking him out of that school but I am confused and worry about hurting Parker. I know he has to love it there he has been going there for six years. I am also told I should report those women for all the unprofessional things they said to me and I should never have anyone that called DCF on us to work with my son ever again.
It looks to me like I will be paying for outpatient services. I am already taking my son to a hip hop dance class every Saturday. He will get used to it. It takes awhile for him to get to anything and I walk with him on a daily basis. I do teach him to use his words and encourage him to learn more about his device.
I just don’t understand why this is happening to us and it makes me sad to think that all we have done for him is for nothing because now our names are forever in a system that says we placed our 16-year-old at risk of harm. I don’t understand this.
We can’t wait for this to come back to Longwood Gardens. It is a great place for Parker. He often falls asleep to this music. It is very relaxing and soothing for him.
We even built a sensory room in our house and when we had to move his room was big even for the swing we had in our living room.