Advocating for your child.

Advocating for your child on the spectrum is one of the most powerful things you can do for your child, or a child you may know. Unconditional love and understanding can only go so far in a world that does not understand the true person they are. There will be many different places your child will go throughout their childhood and adolescents. They will meet many people, and hopefully form true friendships. And I promise you, if you have a child or know a child on the autism spectrum- not everyone they come in contact with will understand them. This could include family, friends, teachers, siblings- really whoever they come in contact with. And from my experience- if a child “looks normal”- automatically they are expected to act/be a certain way. My child is beautiful, funny, artistic, loving, and really wants to make people happy anyway she can. However, a lot of her amazing qualities are overlooked because she acts a different way than the children her age, and she looks like every other child her age- so this confuses people. How can this child look “normal”.. but act so foolish? How can she look “normal” and not know how to talk when she is angry? How can she look “normal”, but not understand how to sustain friendships? And for anyone who questions my daughter on these things, the answer is very simple. She is neurodiverse, not neurotypical. My daughter’s brain is wired a specific way- these are differences. And from my experience in life so far.. everyone I have met is different, and really- it’s a beautiful thing. Unfortunately, it is easy for people to understand a disability/ difference if they can see it. And with autism spectrum disorder you can’t specifically “see” neurodiversity . A family member or teacher would not question why a child in a wheelchair could not play basketball the same way a child without a wheelchair could. Yet they question why a child on the spectrum can’t act the way they want them to, when they want them to.

How would you feel if you saw a child.. let’s a wheelchair (because that is visible) a child with cerebral palsy-unable to control the saliva in their mouth… and someone says .. Stop drooling like that. Do you know how foolish and ridiculous you look? What if I took a video for your friends to see, how would you feel about that? Pure discrimination.. right? So it blows my mind that something to this extent could happen to my daughter- due to her stimming (while actually happy and comfortable) because her neurodiversity is not “seen”. The people who really understand my daughter think it’s cute when she stims when she’s happy, because it is a sign she is comfortable. I guess-some people really don’t think it’s discrimination if they can’t see the disability, even though they know the child is on the autism spectrum. I sometimes hear.. “Oh I know someone on the spectrum and they didn’t do A B or C”… and that may be true.. because- it is a spectrum. People still expect the child to just ‘get over it’ if it’s not a big deal.. as if that situation doesn’t play in their young mind over and over and contribute to behaviors, or reiterate the fact that they feel people don’t like them or understand them. For me, I talk to my daughter about the situations she experiences like this-this wasn’t the first- and it won’t be the last. However-Your child should never have to experience discrimination due to their neurodiversity. And this is why advocating for your child on the spectrum is so important. You need to make people aware of what they are doing to your child. Educate them, provide research, they are not the victim when things like this happen, your child is. And if the people around you who are not understanding your child’s differences can learn from you advocating.. and treat your child with the love, understanding,and support they deserve- that’s exactly what you want- but if they can’t.. your child should never have to be put in that position, no child should. Advocating doesn’t have to be disrespectful, loud, or annoying. Being calm, giving information, and asking for change- will be enough. You may need to be persistent.. sometimes very persistent- but you have the ability to create change for your child, and that is something very exciting! You can make your child’s world a better place to live, by simply sharing information about them.

School is place where you will likely have advocate for your child. I can only speak to our experiences-and my daughter wants to fit in. She masks emotions at school, she masks learning issues, she even (however I think unknowingly) somewhat masks her ADHD, especially if something involves all verbal education. She becomes very distracted and will ask to leave the room (for example) for a drink of water. She knows, at 10, if she acted the way she wanted to at school, she would be severally judged (even more than she is). I took my daughter out of her public school to have the opportunity to be in a 4 month intensive service program ran by our local children’s hospital. After that, she was transitioned back into her community school. I thought, with all the information her local school would now have, she would be more successful. However, I was wrong. The school did nothing to put supports in place that she actually needed. And looking back on it all.. it wasn’t entirely the schools fault. I could have checked in more specifically as well. That’s why, after the punching incident was treated, I wanted to do a check in just to see what she had for supports. It was a tough process.. but the school now knows so much more about her. She came home from school explosive because of all that she had to hold in, and it takes a massive toll on all of us in the home. One day- I went to my child’s school to pick her up, she sees me an immediately starts crying. Someone had punched her in her lower back, a big grade 6 boy. Not a call home, no explanation from the school. The school knows my daughter holds all of her emotions in, and didn’t even offer her someone to talk to after the incident occured. In Fact- she was denied a call home to me. My daughter told me the boy punched her because she tried to put herself in a game she wasn’t first involved in.. but really wanted to be a part of the game. The school didn’t understand this issue- for what is was. My daughter does not have the full ability for social language to talk to new people she knows from school. She has a lot of anxiety and it impacts her social interactions. So she didn’t say “Hi, could I join your game please”? It went something like .. her just taking the ball after it bounced, involving herself (because she is taught to involve herself more).. but in the right manner, however, she just wanted to play- and thought it would be funny. She thought people would just understand she wanted to play. Obviously they didn’t like it, so he hit her (obviously not the right thing either)… I calmly took her home. I wrote an email to her principal. I explained this issue as a whole, advocating for change. Advocating for them to understand her better, and offer more support. And I demanded change- in a respectful manner. I had a meeting, I involved our supports from our local hospital, and I got others from the school board involved. I home-schooled her for about 2 ish weeks until the school could prove the changes that needed to be done for my daughter to feel safe at school, and for her to be supported socially and emotionally. Because of this situation, I realized… they were not doing near enough to support her neuro-diversity in school. I could not have her in school, somewhere she should feel safe, and have her experience the things she is experiencing. There were some agreements, things put in place, and I had my daughter attend her school after a full understanding of her specific needs. I had to advocate for her. No one knows your child the way you do. So the more information you give- the more people will know. The guidance counselor at our local school is simply amazing. This person has made her feel safe, and welcomed in the school. Because of his help at school, she is becoming less anxious and more confident. I am so thankful. And her teacher, as well as the principal and others are so understanding and kind. The more information I give, and the school working as a team-with me- will create a safe, fun environment for my daughter. However, I will do check ins more often, because they are still not doing everything they are suppose to be doing for her. Communication being the main issue. My daughter deserves to be in school and feel accepted, and safe. And if I did not advocate for her, we would have the same issues as before- and that is not fair to her.

As I have stated- Your love and complete understanding is treasured by your child, more than we will ever know- but advocating is a must. We need our children accepted for the unique individuals they are. We need people to understand specific things about our child-for their success. We need our children to feel safe, happy, loved, connected- no matter where they are… because it is what they deserve, and they can’t yet do it on their own. There is no need to be upset when advocating, keep your own emotions regulated. Trust me, I know that’s easier said then done- but no one will want to listen to you if you are angry. Present facts. Give information. Answer questions. By us parents/ caregivers being strong advocates for our children, they will see all hard work we do for them. They will learn to experience things the way they deserve- and one day they will be able to take what we do, and advocate for themselves, and that is the goal we really want. Unfortunately, we can’t protect our children forever. But if we set strong, good examples for them- they will learn the ability to self advocate in a meaningful way, to bring their own successes to life, in the future!

My Daughter at age 6- Grade 1.

 At this point in our life, when our daughter was 6, it was 2015. Our daughter just started grade 1, and her behavior was increasingly difficult at home. She still had a lot of friends at this point, she was social and everyone loved her. She was going into her second year of playing hockey, and this came very natural to her! She was doing great with academics, and her teachers enjoyed having her in class. She didn’t created any issues in class, and was very respectful with any of the teachers at her school. However, as the year went by, her teachers “noticed little things; Such as our daughter being rude to her classmates during free time, lunch, or recess. She didn’t do well when she didn’t have structure. However, people saw it as her doing this because she thought she could get away with things if teachers were not as observant as they are during scheduled classes. During this period, it was usually the other children’s point of view that was told to the teacher. Bailey seemed as if she didn’t care when spoken to, but at this time she could not communicate her feelings or thoughts, especially not enough to defend herself to an adult, after being accused of something. 

During this year, I gave birth to my third daughter. Things were busy at home with the new baby but our daughters loved the baby and helped out anyway they could! Our oldest daughter really cherished the baby and they bonded right away. However, things between our middle child and our oldest (with asd) were not the best. Things my middle child did started to really bother my daughter with asd (all normal developmental things, however our daughter with asd could not handle it).  We had to teach our daughter (with asd) how to play/ talk appropriately to our middle child. 

Parenting my oldest daughter became a challenge. She wanted to do things her way, and if she was told no her reaction could go from yelling and screaming/ saying rude things to us, or just cry and become very emotional.There were also lots of melt downs, and time outs didn’t work. Also, Her interests were a different than her friends. She loved all of the same toy/ games her friends liked, however she had lots of other interests, and these turned into obsessions. Her friends didn’t understand why she would like these interests, and they did not share the same excitement.  Around this time, my daughter really became obsessed with woman giving birth.  I will add this- my daughter had a strong interested in birth and the anatomy of women since she was about 2. It did not start when I was pregnant. She had these amazing thoughts before she was even a sister! But when she did become a sister, the obsession became more intense. 

At this point, it was very hard for our family to take our daughter for long periods of time. Or, situations would occur with family and they wouldn’t know how to deal with it properly. Because of these situations, our daughter would come back from a family visit and sometimes be upset because she was accused of being a ‘certain way’. Or others would interpret her thoughts and ideas as ungrateful…this was frustrating for everyone.  I began a lot (and I mean a lot) of research. I knew these behaviors were not “normal” and slowly, I was finding it very difficult to parent my daughter. It was hard for family because my daughter “looked normal”, so she was expected to “act normal”.

I took my research to the community mental health worker from our local Children’s hospital, who worked at my doctors office. She thought I was losing it. I actually made the suggestion of Autism at some point, she thought this was very far off, and suggested for me to stop all the research. Of course … I didn’t! I needed to figure out how to parent my daughter, so I researched her behaviors and ways to parent kids with the behaviors she was showing. It was so difficult. 

Trying to have someone take us seriously was frustrating and draining. I felt as if I was the only one who knew something was not right with my daughter. I saw my daughter slipping away and regressing, I knew that the way my daughter was, was not her fault. The pain in her eyes when someone didn’t understand her, the hurt I heard in her voice when she couldn’t explain herself but wanted someone to listen. I felt horrible that I couldn’t get her the help she needed, because the professionals didn’t think anything serious was wrong. I was still being told what I should do, to be a better stronger parent. I listened, and did the things they said to do… but we needed more. Much more.

Towards the end of the year, my daughter’s grade 1 teachers started noticing some issues, socially. It was noticed that she couldn’t tell her side of a story because she just couldn’t express herself to the teachers. This became very frustrating for my daughter, and she increasingly felt as if her teachers hated her. She felt as if everyone was out to get her. I had a couple of meetings with her teachers and principal so we could work on better communication between Bailey, her teachers, and myself. Things would happen at school and there would be no record of it in my daughter’s communication book she had to bring home daily. I would actually get upset because the schools communication was terrible. My daughter would come home and tell me a huge story about something that happened, and the school didn’t think that information needed to be shared with me. Thankfully after the few meetings we had, the school did end up sharing a lot of information with me, and I was able to use this to get us started with the help we needed.

One thing that I learned from this year, trying to get help we needed, talking with professionals… is that- you do not have to listen and take their direction! Your child will most likely act differently in a room, in a hospital or doctors office. My daughter knew she was expected to act a certain way in these places. How can professionals see a child for 30 mins and really get much of anything out of them? It is okay to question the professionals working with you and your child. You are the parent, and you know your child best. I encourage any parent to speak up if you feel the professionals in your life are not making the recommendations you feel your child needs. If you talk loud enough and long enough…someone will listen!

My daughter at age 5: 3 years away from becoming diagnosed with Autism Spectrum Disorder.

The summer before my daughter started school was extremely challenging. She didn’t  know how to play by herself. Actually, she didn’t want to do any form of entertainment on her own. I even sat down and watched shows with her. Also, I was pregnant with our second child at this point. I remember being so tired.. just playing with my daughter because her type of play was so intense. She had/has an amazing imagination, however at this age she could not use her imagination for self entertainment. My daughter would say huge sentences about our role play, then ask me to repeat exactly what she said. I wasn’t allowed to be creative playing with her, it had to be what she wanted said, word for word. Then, she would role play, then again say, “Okay mom, now say this”. I would sit and play with her because it seemed as if this was the only way she could play. She would become frustrated if I wanted to say my own thoughts for the game or change what she said. It was a long summer. Lots of fun times had as well, however! I was thrilled to spend the summer with her as I was off on maternity leave. We worked on spelling her name, learning her address and phone number, things of this nature. She learned everything like this before school started! She is such a smart amazing girl! I was/am extremely proud of her. 

The first day of school came and my daughter couldn’t have been any happier! She was so excited for school. When she got home, she shared about her amazing day, new friends, she loved her teacher, and she was so excited to go back. The rest of the year went like this, in school. However, at home… it was completely the opposite. Because of this issue, there were people that thought because she was great in school, clearly I was doing something wrong at home. Comments like this, or unwanted recommendations towards my parenting, hurt. Why couldn’t anyone understand that I did not allow my daughter to act this way. I would get comments such as- she acted this way because I “let” her, I don’t give enough time outs. This was always a good one- she’s spoiled and gets whatever she wants (totally not true). But because nobody could “see her disability” and at this time I had no real help professionally… I had nothing to back up my way of parenting. It was such a battle. People expected my daughter to act a certain way because she looked a certain way. Throughout the school year she met so many nice friends, always had someone to play with, and everyone LOVED her. At the end of the school year, her teacher contacted me and told me that she noticed Bailey (continuously) being mean to her friends, like … really mean, and for no apparent reason. She thought this was strange because she was always so happy and social. This was when she really started to regress socially. It was now noticeable. She also started regressing with motor skills she already had, as well as her focus in sports/groups. 

The summer after the first year of school was very challenging. She (what I now know is regression) didn’t want to bathe herself much, she was getting very frustrated with her clothing and frequently needed help. Lots of (what I now know is anxiety). Also, so many sensory issues. I didn’t know this term then, it seemed as if she was trying to control situations, but looking back, she was trying to create an environment that was comfortable for her. She Wasn’t sleeping well at all, and would usually wake me up by 6:00 am, if not earlier- this was after she was already up throughout the night. It was getting increasingly harder for family members to deal with her. If someone told my daughter they were doing something with her and canceled, or told her one thing and then did another- my daughter would completely lose her mind. She couldn’t cope emotionally. I didn’t know this at the time, but she didn’t even know what she was feeling. A lot of unwanted advice came with that as well. People expected her to behave appropriately, and when she lost control of herself, instead of people being respectful and thinking of ways they could help- she was yelled at and made to fell as if it was her own fault. No one understood her besides me, and I didn’t even completely understand. She would only open up to me, so whatever she told me, I trusted. Most of the time- all of the time- she would tell the truth. It would be the other people adjusting the story. People would say she’s lying, but it was just how she interpreted the situation. One of the millions of things that amazes me about my daughter is that she is compelled to tell the truth! She doesn’t lie. (she is kind of learning how to know, however. But nothing serious)! She even tells on herself! The summer came, we had some challenging days, we had some amazing days. My daughter’s birthday is in the summer, so that summer we had a fun party with friends and family. I kept on her about her manners (words- she did great with, such as please and thank you, and your welcome). Unspoken rules about social interactions is what she was really struggling with at this point in time.

Although age 5 was a hard year, my daughter was happy. We dealt with issues as they came, she had lots of friends, she loved her new sister. I tried my best to teach her right from wrong, and to be there when she needed me. I thought this year was challenging- I had no idea what was in store for us over the next couple of years. 

Let’s talk depression.

Nothing could have prepared me for the depression I fell into when things really started to spiral out of control with our daughters behavior. We didn’t have the proper help for our daughter or ourselves, at this point in our life. I am a stay at home mom so I am the one with the kids (3) for the day. At the time I became depressed, I was nursing my one year old baby, our middle child was about 3 and our oldest (that has asd) just turned 7. My depression hit HARD. So much so, that I didn’t realize how badly depressed I was until I was able to put all the pieces together. It honestly took weeks for me to comprehend that I was severely depressed and that I needed to make an appointment with my doctor.   

It started off with me being very tired and sore all of the time. Everything I did made me tired. But I love being a mom. I cherish it with every part of my soul. I try and do all I can to teach my children and help them grow. I love doing art activities with my girls, getting messy, going for walks, visiting playgrounds, making slime with them, playing with their toys while we role play. However, very, very, slowly… I stopped doing so much. Or I would feel annoyed inside when my children asked to go to the playground for the second time that day. I never showed my children how I actually felt inside, they didn’t know how tired I was. They didn’t know that I was already completely worn out from just the morning. That was.. until they did notice.. a summer day of 2016. The day my depression wouldn’t allow me to leave my bed.

I was the mom who always brought in the baked goods to the class when there were class parties. The mom who has all the kids over for play dates, the wife who got up early and made her husband lunch, and the stay at home mom who kept the house clean. These were all things I actually enjoyed, and took pride in. Always on the go. However, along the way, I stopped doing things for myself, and totally fell out of love of who I was as a person. I no longer felt like doing my nails, taking a long bath, didn’t have the desire for a hair cut, I no longer wanted to do much of anything. Slowly, but steadily my depression was getting the best of me, and I couldn’t see how bad it was getting. My husband knew almost right away though- he saw it coming and tried to help. Thinking I had to do everything myself, there were times when I become defensive and thought, “why would people assume I need help and couldn’t do everything myself”.  Knowing that I could no longer do everything myself, however, I felt I needed to, I was also feeling embarrassed and alone. 

No one really knew how hard it was for me at home. Between the ages of 4-5, my daughter was spiraling out of control. Regressing, severe behavioral issues, didn’t sleep (which meant I didn’t sleep), the little girl I knew, was slipping away from me. I couldn’t do enough for her on my own, and we are still waiting to see a pediatrician at this point in life. We have two other children, so I also had to make sure they were safe, and happy as well. And it wasn’t easy. It took so much out of me daily just to keep on top of my daughters melt downs. Hoping to try and calm her before it was a full blown melt down. Their dad would keep the other kids away from their sister so they didn’t have to hear and see their sister struggling. I was the one who would tend to our daughters needs because I truly ‘got’ her, and I was a safe person for her to be around and take everything out on. She needed me to be that rock for her. She was able to let all of her troubles out in the form of violent behavior, anxiety issues, name calling, kicking and punching walls and doors. And I was the one who was present with her until the end so I could comfort her when she became tired emotional. It would take hours sometimes for a melt down to end. Sometimes I knew why she was upset, most of the time I had no idea what the issue was, other times I could somewhat guess, and try and figure it out piece by piece. My daughter could come communicate her feelings, and most of the time didn’t know the feeling she was feeling. It is one of the worst feelings in the world as a mom, not to be able to help my struggling daughter. There was nothing I could do except be there with her, without judgement, and be what she needed. When all was calm, I would try and switch off all feelings about what just occurred, and for the most part I could, but it was a very overwhelming process. In my mind… it was like- Okay that is over, now I needed to tune into my other children, cook supper, and so on. This would happen multiple times a day. Our oldest was in school during the day, and when she came home, usually right away there would be an emotional out burst. Everyday life became a challenge. Without any professional help, without a diagnosis… I was completely falling apart. I felt so alone.

With the help of my amazing family, they made appointments for me, and physically got me to the doctor. I opened up about how depressed I was, and my struggles trying to parent our oldest daughter. I realized it was time to start taking anti-depressant/ anxiety medication. After a short while, the medication started working and I was myself again. I let go of trying to make everything “perfect” and did what I could do, and didn’t push myself to do more or what I thought people expected me to do. After my oldest had a meltdown I could now switch modes (still a huge challenge) but I had the ability to still be present, be interactive with all my kiddos, and be the mom my children deserved.

You have to listen to your body. Your body will tell you when you have done too much. Do what you need to do for you. You are just as important as any other family member. You are not less of a mom because your house is not clean, or all of your laundry is not folded and put away. You are not less of a mom if you take a relaxing bath instead of playing kitty for the 15th time that day with your children. You are not less of a mom if you take care of yourself, and you are not a bad mom if you ask for help. I truly did not know this, and found out the hard way- just how important self care is. Honestly, I am still struggling with it. But it is so much better now that I set limits for myself, and set goals for myself. I will tell my kids, especially my daughter with asd, a specific time I will be doing something, or going somewhere. It allows for a time limit, they know that I am not being a ‘mean’ mom; because I gave them a heads up on what was going on and when. When you feel like you can’t take anymore- make sure someone knows. Talk to your doctor, talk to your spouse, friends, family, etc. It is okay to directly say to someone, ” I am feeling overwhelmed and I need help”. If medication is what you need, do that for yourself. You don’t have to take on everything alone. Find something that works well for YOU.  And something I’ve learned along the way… if you are direct, people want to help. People can’t guess what you are hinting at, or piece together what you they think you may need. Don’t let depression take over your life. Make time for yourself, and keep doing things that make you simply enjoy life. Once you learn to get over the challenges in a healthy way… life can be beautiful again. You are entitled to have a life, and not feel guilty about doing things for yourself.

What is normal?

As a baby, my daughter was always on the go. She didn’t like to play by herself, she had a hard time falling a sleep, she didn’t like certain clothes, and her stomach usually bothered her. When she got sick… she was really sick. She was moody, but mostly happy. She didn’t like to be cuddled too much, it was on her terms. But, for the most part she was happy.

She was 11 months old when she started daycare. She was extremely smart. She was the leader of the group, and always in control. The daycare thought this was cute, and let her do as she pleased because she was actually helpful. At this age, she was more advanced than the other children. Her teachers described her as an, “old soul”.

At the age of one I thought that something just wasn’t right. She would randomly cry, throw a huge tantrum if she didn’t have on a cotton shirt or pants, she HATED the car- all things I know now, are sensory issues. I didn’t know that then, and just expected it was just my daughter being … my daughter. She liked comfortable clothes, so what?

From the ages of 2-3 she attended a new daycare.. which she again took on the role of a mini teacher. They praised her for being so mature and helpful, and it made my daughter so proud to help out. Everyone loved her, and all the kids wanted to play with her. At this age, things started to get more intense with her. She was very loud, did not listen well to me or her father, didn’t sleep well, threw lots of tantrums, and was moody. She destroyed her books, so much so, that I had to take all of her books and keep them in my room. She began to be extremely inappropriate. Talking about her bum, showing her bum and laughing (more so than the usual kid stuff). She didn’t care about the consequences, she thought that was funny too. At this age, I really knew something was not right but I was a young parent, 21 years old with my first child, what was normal? Was I expecting too much from my 2-3 year old? Should I be tougher? Softer? Was dad too hard? Maybe this was all my fault! Because guess what? When she wasn’t with me … she didn’t quite act the same. Was this normal? I didn’t know. What is normal when a child is learning and growing and discovering?

When my daughter was between 3-4, things were not going as smoothly. She didn’t sleep much. She would repeat conversations her father and I had late at night. She was aggressive, demanding, still not listening. However, she still had many friends at daycare, and liked going to see her friends. At this point, I made an appointment with our family doctor to discuss my worries about my daughter. We were referred to someone in our doctor’s office who worked for our local children’s hospital. I was so excited that a professional was going to be seeing us- we could finally get some help and guidance with our daughter! I was wrong… our experience was the exact opposite of what I thought it would be. And I was basically told to be a better parent! So, that is what I tried to do… but it still didn’t work. My daughter was the exact same way, and was getting more aggressive and defiant as she grew. At this point, I needed more. So my husband and I were invited to do a program called “Strongest Families”. I did everything I was suppose to do (and more). My daughter would respond to something new (once) and then think it was a joke the next time. We finished the program. I learned a lot, however, my daughter did not respond well to what I was trying to apply. I needed more. I called our local children’s hospital and asked them what else I could do. At this point, there was nothing they could offer me because we were already seeing someone at my doctor’s office and she was from their hospital. However, that person was away- for a long period of time, so because of this- our help and support stopped. We were on our own… doing the best we could. It was extremely difficult. I took my daughter out of daycare because I was also pregnant with our second child at this point, our daughter was 4.5 years old when her sister was born. I thought maybe if I wasn’t working, I could keep her home and spend time with her before the baby, and prepare her better. Also try to apply everything I learned from the program and be consistent. After the birth of my second child, we were told- she’s doing these things for attention, shes a new sister, there have been changes in our family, she was starting school soon. So this is why she was acting out. We were told to go back and do what we tried when we did the Strongest Families program. Duh.. why didn’t I think of that!

So what is normal baby/toddler behavior? Most kids find saying bad words they hear funny. Kids like helping out and being a leader, when there is praise. Kids react differently to change. Some kids just like to be in comfortable clothing. Some kids are strong willed. I knew I didn’t have a “normal” baby/toddler- but no one else could see what I could see. I became her only voice.