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My pregnancy was scary for me with my youngest. You hear stories about woman who didn’t know they were pregnant and say how couldn’t they tell. Well, when your period still comes like normal and you have no increase hunger, weight gain, or another symptom I can tell you it does and did happen to me. No, I’m not heavy built or very tall either. It is more common for bigger built woman just not in my case. I had actually gone to the emergency room due to severe cramps almost as if having contractions. where I found out I was almost Five months along. I hadn’t planned on having any more kids and the kids’ father and I had separated not that long before. How was I going to do this on top of everything else. I remember the nurse coming in excited and happy for me, but I burst into tears. She looked so confused. How could anyone be sad about having a baby. Thankfully the doctor pulled her to the side and explained what I had already told him. She gave me a hug and said, “you got this momma.” It did help it was a phrase we used at my work a lot to each other. After all my job was never easy and could be stressful in itself. Then having two children already with one on the spectrum and now a single parent. Lucky for me I had not only an amazing family for support. I also had a second family at my job that gave support and encouragement.

Boog came a little earlier than expected. He was healthy just under five pounds and 19 inches. almost the same as his big brother. By this time newer studies were showing a rapid increase in Autism and also in siblings. As he got older, I started seeing some of the same traits his older brother had around the same age. He had more of the sensory needs than his brother did, but not the tantrums. I wanted what some people told me to be true. I was just worrying for nothing he was fine. It was too early to tell. I started trying to not worry and look past it, but he wasn’t speaking as other kids his age. Different textures seemed to bother him and his obsession of things spinning was not normal. He wanted to always play with a bottle filled with water making it swirl like a cyclone.

I knew what I needed to do already. I started making the phone calls and setting up the referrals for him to get evaluated for early intervention. With speech delays he was put into the early intervention program at three years old. With his aggression and sensory needs, he would get placed right from that program to another special program. Of course, I fought for him to go to the same program his older brother and sister were already at. They were both doing amazing there after all and the staff knew me and my kids. Some of them even knew Boog since he was a baby. I didn’t have to explain are life history defending myself from judgement by staff assuming my children’s disabilities and behaviors were from a stereotypical belief of bad parenting or a dysfunctional home. They were aware of the way the public school district had treated us.

Now with three children in special needs programming, with two on the spectrum my stride is at full pace. All while trying to maintain my career working with special needs children. After all they were like a second family, co-workers and the individuals I worked with every day. Knowing my children were in good hands at their school program helped a lot.

I started working with kids with disabilities in my early twenties. Taking a job at a residential home special for kids ageing between seven to twenty-one with very complex behaviors. Pointing out the very complex behaviors, this is not all residential houses. Each home is very different; some have more complex behavior’s then others, some have none. My employer made me aware of what I was getting into from the start. I grew up having several family members as nurses and working in the field, so I knew a little from the start. Besides it’s working with kids and helping others. Little did I know taking this job would change my whole outlook on things and help prepare me for a very long and challenging journey that some days feel like I will never see the end of that rainbow.

I had never heard of Autism before starting my training. It wasn’t something many people talked about and was just starting to become more openly discussed. When I first started there was only a few of the residential houses with individuals with Autism. The house I would be working in was one of them. It was considered one of the most behavioral in the agency that I worked for at the time. Most of the individuals where nonverbal or had limited communication skills. This was before PECs (Picture Exchange Communication) and iPads got more common. At the time most of the individuals had no experience with using them either. You can imagine the frustration it would cause the individual and the staff not being able to show someone what you needed or a staff not being able to figure out the person’s needs. So yes, the individuals I started working with had behaviors. I will not sugar coat any of the things I seen or went through with them. It is the side no one wants to show or see, but it is to me important people see all sides of things. the good, the bad, and even the ugly side. With out being open to all aspects of it. How can we truly help others understand and learn from it. Most of all so that we can help the individuals.

As I look back at all the things we didn’t have access to like we do now. The knowledge from all the studies and different approaches tried over the years. We have come a long way in the last twenty years. Sometimes I think we tend to forget that.

So, with no real way to communicate needs and wants, No fidget or sensory toy’s really yet at this time. I went to work in this residential home that had six individuals that had a range of disabilities most with a diagnosis of Autism. Between them they had a range of challenging behaviors from Elopement (running off), Sib (self-injury), Pica (eating things they shouldn’t), throwing or breaking things, and physical aggression to others. Pretty much between the six of them everything that can come with Autism was present. Please keep in mind these are individuals with very challenging behaviors that were placed in a home due to these behaviors. They are not by any means what everyone with Autism does. Later on, in my career I worked with individuals with Autism that had none of these behaviors.

My eyes had been opened right at the start of my journey. Working with these individuals some of the most severe cases of Autism my place of employment had seen at that time. I won’t lie I was very nervous and somewhat scared, but within a short time I knew this was where I belonged and what I was meant to do. They didn’t have many staff that would work with them as you can imagine. It wasn’t long before I noticed the revolving door as we called it where I worked either. Staff usually only lasted a few days before Quieting or transferring to a different residential house. Besides the obvious behaviors of getting hit, kicked, or bit, you also had Feses (poop) or other Bodily fluids thrown and spit at you. All of those I understood why some people couldn’t do the job. The thing that even to this day I never understood was the staff that came knowing you had to help the individuals with everyday living tasks like showers, toileting, changing diapers, dressing, feeding and all the other things that people do every day. The things that they had been told at the training before even starting they would have to do. They would come one day say flat out I refuse to do that for the individuals and quiet. A job in care giving is defiantly not for everyone I get that. especially with individuals with special needs. None of us are there for just a paycheck either trust me. I started out making minimum wage which at the time was less than half of what it is now.

Looking past that the bond I grew between each one of them I will never forget. Each individual was so different from the other just as everyone is different. That is after all what makes us who we are. some days were very hard and yes, the thought of going to a different house did cross my mind some days, but the truth was knowing there was only a few that would work with them kept me going back every day. Yes, they all had families that cared for them and loved them more then you can image. Their families would visit as much as possible but in reality, some of them lived far away or had no transportation. Let’s not forget taking time off from a job to come visit.

In just a few years I had gone to more trainings than I can count. The new things being taught on how to work with the individuals. All the new things coming out to help with sensory processing. How to address the more challenging behaviors and the different communication devices and technics becoming more available. The different programs and Early intervention starting to take hold. Most of all the behaviors in the individuals I worked with started to decrees. One thing as a staff I noticed was the number of individuals with Autism was getting to be not so uncommon. Also, that what was thought of being mostly in males and only one child in a family didn’t seem to be the case anymore. We started getting more girls and siblings. The whole stereotype of what was thought to be had started to be thrown out the door.

The experience I would gain and the things I learned early on would help me in the future. I got to work closely with specialist in all different areas. Helping collect data and trying different methods to help the individuals cope with sensory needs and calming technics for behavior management. The different special diets that seemed to work for some, but not others. Basically, if it was thought of, we tried it.

With all that training and a few years of experience working with individuals with Autism. It would give me somewhat of an advantage before even having children of my own. More than most parents with kids with Autism would start with. Not to mention the resources I had at my fingertips.

When I had my daughter there wasn’t any concerns. It was a normal pregnancy and birth. She was a beautiful healthy baby at almost 5 pounds and 17 inches. A little fussy at first, but the doctors said it was most likely she had an allergy to dairy and switched her formula. It seemed to help some. She would wake up a lot through the night. so frequent that I ended up just keeping her in the same room as me. The only way to get her to sleep was rocking or car rides. The doctor said she was just a very colicky baby and had no concerns.

She hit all the milestones right on target as she got older. A little shy around people but that is common. Her voice was so soft, and she was so well behaved. She was a typical child with a tantrum here or there but nothing like her older brother. In which case had been in early programming for almost a year at that time and was doing amazing. I didn’t have any concerns for her at all. Besides at that time the specialist believed Autism was mostly in males and only usually in one child not all siblings at this time.

At four years old, just before starting school she started having difficulty with her vison. So, when she started having more frequent behaviors myself and the doctors thought it was due to her starting school and not being able to see very well making her frustrated. She would get angry at herself for mixing up letters and numbers or that she couldn’t read as well as her big brother. On top of that thinking they were learned behavior from her brother. Even though he was doing much better he would once in a while still have a tantrum, but they were no where’s as server as before. I had seen it at my job where one individual would start to copy others behavior’s. It’s something all kids do.

Shortly after starting school, she would call herself stupid and other names, in which case I did not use in my home. Her outburst started getting more frequent and tantrums became more server. Her whole personality seemed to change as if someone hit a switch on a light. What was going on with my daughter for this to be happening. I started asking doctors and teachers which in turn would say something had to of happen to her. something traumatic. With those words as a parent, you think the worst of everyone. Knowing nothing happened to your child when you were with them so when or where could have anything happen and by who. Their father had just moved out right before I had her younger brother. Was that what was affecting her. She was starting to eat a lot more almost as if she couldn’t get full. She seemed to have trouble paying attention and focusing on things. Then the PICA (eating/putting noneatable items in her mouth) started. I had the doctors do exams and studies with her. If something somehow happened to my baby, I wanted to know. Not to mention now I’m being questioned as if I allowed someone to hurt my child. Being a mandated reporter for abuse myself I knew they were only doing their job, and I tried to not let it upset me. I had nothing to hide and all I wanted was to get to the bottom of what was going on with her so I could help her. The doctor reassured me there was no signs of abuse and her behaviors could be due to ADHD (Attention-Deficit/Hyperactivity Disorder), and she would need to be evaluated.

At this time my oldest son was unofficially diagnosed with Autism by his school program and new pediatric doctor. He was on a list for evaluation by a professional clinic for almost a year at this time. How long would I have to wait for her to get in to be evaluated. In the meantime, she is struggling and on top of that now I have a school system that even with a doctor and specialist saying my daughter was not abused. The behaviors were due to ADHA. thinking I am a bad parent, already starting to pass judgement on me. That something had to of happened to her.

This is when I started to see how fast others are to judge and use stereotype-based thinking on parents and children with disabilities. I used to be the same way before I started working with individuals with special needs and actually getting to know the families. Not to mention knowing the newer research had blown most of the old information out the door before I even had my daughter. I knew the belief of the parent must have used drugs or alcohol during pregnancy, there isn’t any discipline or they must have been abused. The home has to be dysfunctional in one way or the other for children to act out in these ways. Well then, the parents must have some kind of learning disability themself.

I get that we tend to judge based off are experiences and information we have been given. It is hard to keep up on newer information and studies on different things keeping that in mind. The information has been changing a lot over very short periods from my experience. Not to mention I knew the families of the individuals I took care of and I can assure you none of those things applied to most of them. I was starting to see what some of those parents had gone through having a child with special needs.

The phone calls from her school would be at least once a week due to her behaviors. She would walk out of the class or hide on them outside during recess. Putting things in her mouth she shouldn’t have been. Then the yelling and talking back started. Here she was in first grade now and still on a waiting list. The school telling me I wasn’t doing enough and to call the doctors every day to get her in. Working in the field I knew most of the specialist were full and the wait was long.

This part does not come easy for me to talk about. I knew I was doing everything I could for her at the time. I would even discuss things with coworkers to try and see if there was a way to move her up the waiting list. I had her put on three different clinic list for specialists to evaluate her. I didn’t go through this with my oldest. He never went to the public school. This was new for me, and it shocked me. I had heard stories about how some public schools treated parents of special needs children, but the reality of it didn’t hit until it was happening to me. Having someone come into your home asking you a million questions on how you parent your child. going through your home seeing how clean it is, if there is food and clothing for your child. The paperwork from doctors and the referrals for specialist to prove you are doing everything for your child. As you are being asked questions along with the look on their face when they see your home and children. It hits you; the school called them. The anger and disbelief I had you can’t imagine. Then to have my kids scared to death thinking some stranger was taking them away from stories they heard from other people. This person was just doing their job, and I had no reason for concern. I keep a clean home, and my kids always have what they need. So, I gave them what they needed and held back my anger. The next day my daughter’s teacher called and confirmed by straight out telling me they had called because now that child services where involved the doctors would move my daughter to the top of the list. In their exact words ” We did it to help you”.

They put my children in fear causing both my daughter and oldest son to shut down and become more behavioral. Not only at home but at their schools also. Simply because now my daughter is scared of the school now after hearing staff talk about what they did. Now I have more stress and worries to deal with. so no, it didn’t help it only made things harder for all of us in my home. This went on for almost a year with the school calling child serves almost every week. It got to the point they asked me if I wanted to file harassment charges on the school. Child serves even informed me they were starting to see a pattern with some school districts and families that have children with special needs. This was not ok for schools to be doing.

We finally got in for her to be evaluated that summer after I reached out once again to co-workers for help. With a lot of phone calls and favors asked she got moved up on a list. Being diagnosed with ADHD and O.D.D we were on are way to get her the help she needed. At this time a newer program had started in a different school district that was specializing in autism and other learning disabilities for children that had challenging behaviors. Yes, there were a few people that I had worked with for years that went to work there. That was how I knew about it. With knowing a school district had to meet my child’s needs or transfer them to another one that could. I had already transferred my oldest to the other school program. Where he was doing really good. so, I started the push for my daughter to go there as well. Now with having two children with special needs that I needed to advocate for, my strides got even bigger.

I had some worries as most parents do, especially first-time parents. I had to take medication around five months along in my pregnancy to stop early labor. So, when the time came to have him, I had a few more concerns. He was a few weeks early, but he was a healthy baby at 5 pounds, 19 inches and no concerns. I couldn’t have wished for a better baby. He slept pretty much through the night right from the start. I would have to wake him for feedings. He was hardly ever fussy and didn’t cry much.

He was hitting all the milestones parents and doctors watch and wait for. Some things he did a little earlier than other kids like rolling over and crawling. At about two he showed an interest in numbers and letters. He started counting and knew the alphabet even writing them. The doctor said he was just a smart boy. There were no real concerns until he was three years old. I started getting concerned with his speech. He wasn’t putting words together making full sentences like other kids his age. He would fixate on the tires spinning on his toy cars. Lining objects up perfectly and he couldn’t stand getting his hands dirty at all.

As a parent that worked in the field for kids with Autism I had been told many times I would pick things out and over worry. That all of it was normal for his age. He was after all already writing and counting. So, I dropped my concern with the doctor. However, I did start reaching out more to my coworkers. Where I was given the information on early detection and to reach out to the school district, we lived in at the time to have him evaluated to see if he needed it. I was told I would have a choice of a place to do the evaluation also. So of course I chose the agency I worked for. They knew me and how I was as a person and a parent.

This is when the tantrums started also. Yes, it is normal for a child to have them but in the degree, he had them concerned me. This is where I feel most people don’t understand the true nature of how these can look. So, I will do my best to describe it for you. They are not as other kid’s tantrums. dropping to the floor, yelling and banging on something. They are more intense. He would throw himself against walls, the floor, and furniture. Become easily frustrated with things such as the tires on his cars not spinning fast enough or getting them in line perfectly do to the carpet lifting one higher. becoming upset because his hands got sticky from the ice cream he ate. The look in his eyes I cannot explain. It is a look that I was familiar with from years of working with individuals with autism. Other parents and people that have worked in the field know and can understand. It is as if you can see every emotion possible through a person’s eyes. So much anger and sadness yet almost like a fear. You can see a tension threw out their whole Body almost as if they had just gone through a traumatic event. All while crying as if they couldn’t control it. So, no these are not typical tantrums of a three-year-old I refer to. These are more than a miss behaving child. From my experience this is where a lot of parents are miss understood and judged.

This is when my steps became strides. On one side I had regular doctors who didn’t really know me telling me nothing was wrong. I just needed to be firmer and discipline differently. On the other side I had professionals in behavior and special needs that knew me very well telling me to start early intervention and have him evaluated. Pointing out the who knows me as a person and who doesn’t for the simple fact as I tell my experiences on how I was treated or looked at as from not only other people in the public but doctors and school officials also.

After months of calling and requesting a screening from the school district, and only after getting a coworker who was a specialist to make a few calls to push things along. He finally got screened and evaluated by the school district. I did not know the person that did his evaluation and they didn’t know me. They agreed he was delayed in speech and in his hand and feet coordination. He was enrolled in the early intervention program the agency I worked for had. For me there was nowhere better. They kept up with all the latest studies and things with autism and other disabilities. I was very lucky and grateful to have more than most right from the start.

Now I just had to get an actual diagnosis. What was actually going on with my son. Was it just some mild delays or was there more to it. At that time, I wasn’t thinking Autism. I had only worked with individuals that had very sever Autism along with other disabilities. He wasn’t doing a lot of the things they did. Besides there are a lot of other disabilities and things that it could be. Even with him in an early learning program. I was told he was too young to be evaluated and diagnosed. We would wait until he was five years old and see where he was and then the doctor would make a referral if one needed to be done. With that one of the longest waits of my life began along with the fight advocating for my oldest son.