Holidays and High Functioning Autism.

I literally just got my shit together since Christmas. I love Christmas, my husband loves Christmas, our children love Christmas. Well, my husband and I love the “vision” of Christmas. If we could somehow magically have Christmas the way it is in our minds… That would be perfect. You know … Fun Christmas baking with the kids, family gatherings, watching old Christmas movies as a family, crafts, outings, playing in the snow as a family. These are all things I pictured would happen when I had a family, celebrating at Christmas time. Fast forward to this Christmas, and although more successful than last Christmas, it was still extremely stressful and exhausting.

My daughter on the spectrum, loves a schedule. She really thrives when the day is planned, so she knows whats up. She likes knowing what is going on and what is next, and she likes the structure of a school day. Although my daughter loves having time off of school and being home with her family, it is a struggle for her- and she is automatically put in a situation where she feels overwhelmed. This Christmas was a good learning experience for myself, because I was able to see where she was struggling, and offer my guidance to her, although is was not always accepted!

We did have a great Christmas, I learned a lot from last year, so I made some changes this year for the break to go more smoothly. ( I also learned a lot from this Christmas… so next year, I will make more changes to make the break easier for all of us. My daughter had a few meltdowns that I couldn’t tell what caused or contributed to them. They were long, and intense, but there was no violence, and she was able to communicate her difficulties to me.

So here are the things I did this year to try and make the break easier on my daughter:

  1. We didn’t leave our home Christmas Day.
  2. We didn’t buy A LOT of gifts.
  3. We had family come to us.
  4. I didn’t worry about ALL of the traditional Christmas decor
  5. We got our tree a little earlier, and I did not fuss about the set up.
  6. We set limits with spending their gift cards/money they received.
  7. I didn’t push myself to bake ALL the Christmas desserts.
  8. I didn’t worry about the mess on Christmas morning and let my kids enjoy their gifts at their own time.

I knew this year it was very important to stay home on Christmas day. It is too overwhelming for the children, and causes so many issues for my HFA daughter. We bought the children some really great gifts. They received what they asked for, plus much more. However, I didn’t buy to much. Last year there were too many presents and it was actually overwhelming for the kids. Family coming over to us was great because I could go off with my daughter if she needed a break. There is a lot of pressure on my daughter when we are out to act a certain way, and it literally makes her tired, which then causes other issues. This year I did not bring out all of the Christmas decor. Our house was Decorated, the kids loved it, but it was not overwhelming. I find when the house is cluttered with extra stuff, it creates anxiety for my daughter. Because I didn’t put out a lot of decorations, I was okay with getting our tree a bit earlier than usual. There is a tree lot just down the street from us, so we go as a family and pick out the tree together. It’s not too much for the kids because it is close by. I really enjoy it. We let the kids decorate most of the tree together, this gets a bit chaotic because any group activity with the kids requires a lot of redirection (for all), but we just modify the tree decorating. We give a certain amount of ornaments to each child, they can also pick a few that are their personal favorites, and just try to eliminate any issues you think their may be. Then I just leave the tree as is. They are proud of their work, and I don’t need the tree to look as if it came out of a magazine! This year we really set some boundaries with spending Christmas money. My daughter is obsessed with money, so when she has some – she wants to spend it right away. The other children still have money, and my HFA daughter cannot comprehend why they can buy things and she can’t. What I did was, of course let them use their gift cards first, then set a limit and a date for when they can buy something else. This way, no one feels hurt, or left out- and everyone learns about money! I did not do ANY baking this Christmas. I planned on making some cookies with the kids, but we honestly never got around to it. I bought some prepared dough for the cookies we made for Santa, and picked up treats here and there… but I didn’t stress myself out making a ton of treats for family and friends. Baking is a huge task with my daughter, it is hard for her to follow directions, an she gets frustrated easily; it can be stressful. My daughter had a great time opening the packaging and placing cookies on the sheet. And last but not least, I let my kids play. All Christmas morning. They got to explore all of their gifts. I didn’t care that the living room was messy, I didn’t care if people thought I didn’t clean… I let my daughter have a relaxing Christmas at home with her family. There was not one melt down on Christmas. It was our best Christmas yet.

As I mentioned, my daughter likes a schedule. So… knowing this you think I would have made a schedule for over the Christmas break. But I didn’t. I am going to plan as much as I can… even if it is just a simple schedule. A family color time, quiet time, free time, whatever it may look like- even day by day. This will help with the unknown, give her something to look forward to, and keep with the flow of a schedule. Also, I will include her in the planning, so I can include things that she wants to do, stuff we may not usually have time for.

From reading books, and taking courses for parents who have children with behavioral issues, I’ve learned so much about how to modify my parenting style. One of the things that stuck with me, (by Ross Greene) is- Kids do well IF they can. You can’t go into a holiday at home not prepared at all, no plans, and just expect your HFA child to just chill and do things on their own. You need to set your children (all children, but especially children on the spectrum) up for success. IF you help your child be the best they can be, they will! It really is that simple.

So after our Christmas, I was slowly able to get things back in order. My daughter was back in to the swing of things with school, I joined the gym and got our eating back on track. Then- everything went out the widow. My daughter fell at school, and she needed stitches. We were in and out of the hospital for multiple hours at a time, one time getting home at 3:30 AM. I was tired, exhausted, and tasks were starting to pile up. A few days later, the two little ones got the flu. When my other children get sick, my HFA daughter doesn’t understand why I need to give them extra attention. She feels left out, and it is very overwhelming for everyone. After my two littles got better, Me, my husband and our oldest daughter got the flu. Now that everyone is better- I can start a schedule again. My daughter was still thrown off from being sick. She had a few days off school (after a few days off already from her fall) So right now homework is a hard task.

The holidays can be very challenging. For us, it takes a few weeks to get back to normal. The best advice I can give is- be prepared. Learn what is hard for your child, and try to modify things so they can be successful. Don’t do things just because you feel you have to. It is not realistic. You need to do whats best for you and your family. Do what works for you! Make your own traditions, and try not to worry about the small things. What matters is… family! I gave up caring if other people don’t like or understand things we do as a family. If you are worrying about what others will think- here is my opinion. It took me years to learn this, but no matter what you do, there will always be people who don’t understand why you do what you do. Even if they know you have a child on the spectrum. People don’t really get what your life is like with a HF child, so, why bother caring what they think of what you do over the holidays and how you spend your time.

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!

Social Masking And Girls With ASD.

My daughter knew how to fit in from a very young age. This is one of the many amazing things my daughter can do. I can talk positive about all of this now because I have so much information and my daughter can now communicate a lot of her feelings. Also, we see a very amazing autism team at our local children’s hospital. But trust me; up until this year things were still extremely hard to understand, and very overwhelming for my daughter and our family.Β 

So what is social masking? Social masking is where a person, like my high functioning autistic daughter, can “act” and make themselves fit in. It is not forced, and looks very natural. Which is the goal. Girls are amazing at observing and seeing how people act in a social setting. My daughter knew there were expectations, socially, so she would watch and observe what others did, and she did that too. This is why she was so successful in daycare. She took on the role of a teacher. This is what she also did in school, however, when the school friends turned a certain age they did not appreciate Bailey’s leadership qualities.Β 

My daughter would mask herself whenever she had a play date, out with a family member she wasn’t close with, or social functions. I would be extremely nervous if my daughter was going somewhere without me just because her behavior was so unpredictable. However, I only received amazing compliments when she would return home. She knew how she was suppose to “act” while she was out of the home, and she did it. But it took a lot out of her. This was extremely confusing at the time, and this is where a lot of negative comments about my parenting would come in. I heard, “She acts perfect with me.” Meaning… I must let her get away with everything because she was great when out. I couldn’t have possibly done anymore with my daughter, I didn’t know why this was the case, it just was. I didn’t have answers for people. And I knew I was being judged. Either I would hear it directly from someone, or hear that there was talk about my parenting.Β 

Social masking took everything out of my daughter. I know this now. But for 6 years, my daughter used social masking as a way to have friends and fit in- do the “normal” things kids do. But it was confusing to others when she would be wild at home and calm out of the home. When my daughter was finished with a play date, or came home from school-it was a nightmare. Looking back, knowing what I know now… it is so heartbreaking how hard she had to work to fit in. She would have migraines after playing with friends or being in school; come home and explode. She had to hold herself together for so many hours during the day. She would still experience sensory issues, people were extremely hard on her, all of this she had to keep inside until she got home. To her safe place. At home, she could explode. She knew her parents would love her no matter what. She is a social masking pro now, and she is getting really good at controlling her emotions. She learned to do a lot on her own because she was not diagnosed until age 8. It amazing me how smart and resilient my daughter is. I think things are challenging for me, as her mother, (which they are), but I can’t even begin to imagine how she feels on the inside. She once told me it felt like there was a storm inside of her (before she was diagnosed). I feel like that is an amazing description because when she explodes- it is one of the most terrifying, draining experiences I have ever had. I couldn’t even begin to comprehend what all of that would feel like, holding it all in when gone from home. My daughter is the strongest person I know.Β 

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. 

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.