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 say..in 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’..as 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!