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!

Meltdowns, Tantrums, and Rages Part 1.

Before we had our daughter diagnoised we use to have rages, tantrums, and meltdowns several times a day. Seriously. They were long, loud, and I didn’t always handle myself properly. I couldn’t help my own daughter when she was in this state. Eventually her rages were so bad, we had to resort to medication. I felt horrible about this, however nothing else would help her… and with the medication it basically made her very sleepy. It wasn’t pretty… and I won’t sugar coat the experience. I had to essentially hold her down and make her take a pill. It was horrible and my heart broke for my beautiful daughter. When this occured it would take everything from me. I always felt like I had nothing left to give after these situations, however, when you have other children… it’s not so simple, so I had to hid my emotions from my other children. It was one of the hardest things i’ve ever done. I remember feeling tons of emotions. Sad- for my daughter, anger, worry.. I physically would become tired after dealing with a rage because it would take so much out of me. I felt so horrible for my daughter because if I felt this way, and I wasn’t experiening the rage… how on earth did she feel?? I know a hell of a lot worse than me. I can’t even begin to think of how difficult these experiences were for her. Usually, when these occured we would go to our local children’s hospital. ( I am not even going there right now … that’s definetly going to be a blog all it’s own).

I am writing this in parts because if you can understand the differences between meltdowns, tantrums, and rages I feel it will give you a better understanding of a child with high functioning autism. Let me tell you this- A child doesn’t want to get this out of control. A child doesn’t think it’s fun to get their parent to the point where they sit on their bedroom floor and cry uncontrollably. A child does not choose to get to the point where at 7, they feel like they would be better off dead. So lets start there. These situations are not brought on because a child is “bad”. These situations are brought on because, as for my daughter… she struggled with knowing her own feelings, thoughts, actions. She went from 0-100 in a second. She didn’t know how to calm down, she couldn’t do anything except- express how she felt… and the expressions often came with agression, loud yelling, spitting, upset/ scared siblings, and exhausted parents.

Let’s start with tantrums. I feel like this is a popular word most people understand. Being a parent with a daughter on the spectrum, I often will hear this word from people when my daughter is losing control of her emotions. Looking back (a few years) my daughter had tantrums, most kids do. There were things she would want, and couldn’t have, and sometimes she didn’t like that! When my daughter was in calm state, and she wanted something she couldn’t have, yes absoolutely she could have a tantrum, just like any other child. However, because my daughter struggle with reasoning, and not understanding her feelings or emotions… it would go from a tantrum to more than that very quickly. I couldn’t tell what my daughter was experiecing, and often I would think she just started with a rage.

Tantrums for us are when my daughter wants something and can’t have it, or wants to do something (usually right away) and can’t. It is usually not too intense,(for us anyway), but if not helped right away it can lead to more. A tantrum these days may consist of, her having a great idea.. but it just doesn’t work for the family that day/time. If you can see the tantrum from her point of view, you could see why she would be upset. She makes a wonferful fun plan in her mind, that would bring her lots of joy. She tells me this plan (usually consists of spending money), and even though she took the time to tell me this plan, and give me good reasons, she is told no. For people who do not understand high functioning autism, or for those who may think my daughter is “spoiled” and thowing a fit, this is when tantrums go further. She needs to understand exactly why we can’t do what she wants, and she needs help making her idea a plan when it works for everyone. From years of hard work, research, and keeping track of issues, I now can fully tell when my daughter is having a tantrum. Infact, she has them ALL THE TIME. I would go as far as to say she has tantrums between 1-4 times a day. It all depends on her mood, my mood, how she is spoken to, and whats going on around her. When I notice my child at the start of a tantrum, I take her to a quiet place, let her explain herself, and help her figure out a solution. Here is a strong example of something that would cause a trantrum for my daughter.

Daughter: (Spends time in her room making a plan so she can do something to make herself happy, because she is probably “bored”). Comes out with the idea that she is now not going to be bored because of this amazing plan she has created. She may say,”Mom, I was watching a youtube video and they put these really cool beads in their slime. I can’t put the beads they have in my slime because I really love the slime I have now, BUT I NEED to go out and buy more slime stuff AND these beads. It will be the best slime ever! Can we go RIGHT NOW and get all the slime stuff”??? (At this point she is super enthusiastic and eager.

Me: That sounds awesome! I love that plan, lets do it on the weekend! We just bought slime stuff yesterday, so we don’t have money for more slime supplies right now.

Daughter: Tells me 50 reasons why we should go spend money on more slime stuff, and if we can go on the weekend why can’t we go now.

Me: I know you are upset that we can’t buy more slime stuff, play with the stuff you have now, we just went yesterday, and today I am not going out to buy anything.

Daughter: **Now extreamly frusterated, and tantrum has started.**

She doesn’t want to be told no. So, at this point she will usually tell me she hates me, call me names, cry, scream….

It could go one of two ways.

WAY 1- I think before I speak to her, tell her again that I love her plan and that we can do it, it just has to be a day that works for all of us. We make that plan together (even though she is still angry and “hates” me. If she asks again after our final plan making .. I simply say- I have already told you the plan. Getting her to write out the plan often works because she can look at what we will do, she can look on the calendar for the date… she has all the info she needs and no longer needs to repeatedly ask me questions about it, that would further made her worried or upset.

WAY 2- This is the way I use to handle it.. because I didn’t understand my daughters needs before she was diagnosed and I could only try my best. Also, family or friends of the family may handle it this way if they don’t respect your childs diagnosis, or they don’t take the time to educate themselves on your childs dianosis. Child comes to you with said plan, you already bought slime stuff the day before. Child comes to you super excited, however you are annoyed your child doesn’t appreciate the slime stuff you bought yesterday, and now you are upset because you said no, and your child is mad. Now your child took their frustration out on you, dad, brother, sister .. whoever it may be. And now they are in trouble for acting out. And now need a time out… and doesn’t want to because they were bored and thought of this great plan you don’t want to do. So now this tantrum is turning into much more.

Tantrums can be stopped, or helped. There is a reason your child is having a tantrum. As a parent, it is your job to figure it out and help them. Especially when your child doesn’t know how to say- I’m angry, this makes me mad, I don’t understand. For us- it can come out in swear words and yelling. (It’s not okay, and she is getting so much better understanding her emotions) however, if you can see your child getting upset, and help them before they explode, you can help them through a tantrum!