I have been sitting on this and processing for over two weeks and finally ready to put the words out there to share. I have been quieter than usual on social media, I haven’t been returning messages to everyone, I just haven’t been great.
Any parent who has a child with challenges will tell you it’s a lonely journey. You are sometimes jealous of other parents, you’re insecure because you’re feeling judged, you’re holding your breath waiting for what’s next. That’s been me for the past 18 months. I have been searching for answers, ways to have a different child, ways to be a different parent, ways to make our situation better. We try new things and it works until it doesn’t and then we try something new. I have had some people share their opinion about my daughter, positive and negatives. I have the school tell me there are things wrong and then friends tell me that can’t be true so I went into a psycho ed assessment thinking I would prove the school wrong. Over the last two months I started to think there’s a learning disability there for sure, but nothing really prepared me for what we actually were told.
Mackenzie has been diagnosed with Intellectual Developmental Disorder, mild severity. If you’ve never heard of it; neither had I. If you feel like googling it, you’ll likely get overwhelmed like me. Things I read: it’s a cognitive disability, it affects 1-3% of the population, it’s a relatively new diagnosis but just used to be known as “mentally retarded”, they can have issues with school and basic skills like dressing and grooming, it cannot be cured, etc. It’s diagnosed based off IQ testing and the questionnaires we and her teacher completed and really the biggest recommendation is for us to find a team of people who can help us teach her skills she will need to hopefully live independently one day.
If you know Mackenzie and you’re confused, so are we.
Sitting through the feedback session by myself with the psychologist was hard. It took her a long time to get through the things she tested and the results of each to finally get us to what the term was. After every few minutes she would stop and ask how I’m doing. I just kept saying I’m ok. Once I finally got the diagnosis and asked what we do and was basically led to believe that my kid may never live independently, I wasn’t ok. I was breaking inside but I couldn’t show it, aside from dabbing a couple tears away from my mascara, I was basically a stone. I just needed to get out of there.
I called Rob to share and explain while on my way to meet a friend for coffee. We were both confused, expecting we would hear about a learning disability, not this. I shared the psychologist said there could be some ADHD in there but it’s hard to tell if they are ADHD symptoms or a result of her cognitive abilities, so she decided not to write it in the report. After that I checked my makeup and walked into Starbucks and put it behind me. I visited with a friend after being gone for a year and tried to be normal while internally my head was in a warzone.
When I got to my parents I started crying almost immediately. I skimmed through the report I had received to my email and shared the highlights. That’s when I started to google what this means and found out the above that I shared with you. To think I somehow got the 1% was such a hard feeling; it still is. I looked at all the causes, nothing made sense. There were no brain injuries, there were no issues with pregnancy, I don’t drink or do drugs, nothing made sense for her to have this. When she was born she had a brief period where she stopped breathing and needed to be helped but was that long enough to cause issues? It’s the only thing that makes sense when I look at the causes, but there was literally zero concern shared by the staff when this happened, wouldn’t they have mentioned it?
I didn’t have a lot of time to deal with this because it was time to get ready to go out again. I had a surprise photoshoot planned for Mackenzie with a unicorn. I got her dressed up for the shoot but didn’t tell her where we were going. She was so surprised to see a little unicorn there, kept saying “wow!” “I’ve never seen a real unicorn before!” And she loved every moment of our session. It was so beautiful to see my little girl so happy just hours after I was handed a report labeling her.
That night I went to TikTok looking for hope that this isn’t as bad as I think, the term “mentally retarded” was scary, reading that she may not live without me was scary, well TikTok didn’t help me. I cried and cried. I cried grieving the child I thought I’d have. The little girl who wants to be a doctor may now never leave our house. I have pushed her every single day and seen progress with her and am now told there’s nothing I can do to “cure” her, I just have to help her with basic life skills like brushing her hair, ordering off a menu, counting change. The confusion in my head and the break in my heart just devoured me. I went to bed and lost it, mom came in, laid down and held me while I cried while Madison slept in her playpen beside us. Mom cried too, not because of the diagnosis but I think because of how much I was hurting.
I felt like a zombie that weekend. I felt numb. My best friends would reach out and see if I was ok and I couldn’t even process to fully respond. I wasn’t ok. Truthfully I’m still not ok.
I know my daughter. I know what she is capable of. I know her challenges. I also know her progress when it comes to academics. What I see and read doesn’t fit the girl I know. Does she just wake up one day and suddenly she stops progressing, her mental age just stops growing? I can’t wrap my head around how she has been diagnosed with something that I don’t know the cause of but I can’t cure. It’s an awful feeling.
It’s lonely.
I’ve been advised by friends to seek another opinion but I have decided not to. We had to pay out of pocket and travel across borders to do this and I really don’t want to put Mackenzie or myself through it again. All I can do is take the recommendations given and try to help her. Try to create a team around us that can help her with behavioural, speech, movement, etc. and try to create a team at school who can accommodate her learning to help her progress. It’s recommended that every 2-5 years she is reevaluated so I feel at that point we will see if we are still in this same situation or if it was a misdiagnosis. Getting extra support now is not going to hurt us though. Mackenzie needs 1:1 support to thrive and if we can get that with this diagnosis, it will benefit us. I feel that’s my only path forward right now is to return to BC and try to find out who can help our family. There’s not a lot of resources available there. I actually put a message through to the center a week ago asking for someone to connect with me regarding the services they recommended we find. I have received one message so far who informed me they can’t provide us behavioural services without an autism diagnosis. That’s disheartening. We have been handed something that has completely changed our lives but it’s not in the right bucket to get help. Not a very good start.
Since then, we have had some ups and downs. Downs probably feeling more down due to the fact I am still dealing with all these emotions.
I had to take her to a dental appointment, and she had so much anxiety once she got there that what should have been a 15 minute appointment was over an hour because she kept whining, not letting them in her mouth, kept trying to leave, pushing away, etc. She was traumatized from a couple years ago (so was I!) and I couldn’t get her to sit through this cleaning and all it was was basically brushing and flossing. When the doctor came in she was so scared of him even putting his fingers in her mouth. I tried to be calm, I tried to be encouraging, I tried to use bribery, I tried to be tough, nothing was working. I could see the hygienist was getting frustrated with her and that was making me more anxious and upset, I debated saying something to her regarding Mackenzie’s situation but I didn’t. By the time we got out of there and she was snapped out of it, I cried silently the whole way home hiding behind my sunglasses. As soon as I walked into the house I burst into tears and my mom got up and held me and sent me for a break to cry alone. I just felt so sorry for myself for not having a normal kid which is such an awful thing to think about resulting in some more tears.
I put Mackenzie in her old day care for a few days so she could socialize with some of the kids she used to go with that were stuck here for the summer, I could tell she was getting cabin fever being stuck inside with adults so she could use the break. The first day she was shy because the people she knew weren’t there and she didn’t know many other kids. The second day she did much better and got comfortable with who was there. The third day I asked our favorite teacher how the day went as they went on a field trip and she said so so, typical Mackenzie. I asked what that meant and she said, “oh you know, if she gets a scratch on her hand or wants a certain snack, the whole world needs to hear about it”. I know this teacher well, she knows the journey than began in kindergarten, so I don’t know if it was the delivery or the tone but I felt like I had to say something and I shared “just so you, she has been diagnosed with a cognitive disability.” That changed her body language and she became supportive and said that will be good and hopefully we will be able to get some resources to help us. It was my first time saying to someone outside my small circle that there was something wrong with my daughter. I don’t know if I was doing it as an excuse or as a defense shield, but it came out
Another night we were lying in bed after we had just got in a fight during homework. When she gets stumped on something she stares off and doesn’t listen and then I get frustrated. In bed I told her that the reason I am pushing her is because I want her to know how smart she is and when she shuts down like that people won’t recognize how smart she can be, they’ll think she is stupid, and she isn’t. She burst into tears and kept telling me she was stupid, people at school think she’s stupid. It was so heartbreaking to hear and hard for me to keep my tears in because I feel this is going to be something she will deal with for the rest of her life and all I want to do is protect her from that and I don’t know how.
So that’s really where we are at. Writing this post took me a long time, I had to hold back tears more than once as I typed. I am truly not ok with this diagnosis yet. I still feel I am grieving the image of the girl I thought I would have. I am nervous about what the future is going to look like for her and for all of us. This last week I have connected with two men from high school, both having kids who are on the spectrum, and that oddly has made me feel not so alone as we have been able to relate with each other. I also started reading a book called Differently Wired where I cried in the introduction because it felt so much like my life. There are people out there that I can relate to and that I can learn from and I think that’s going to be the most valuable thing going forward.
I got her pictures from her unicorn session this morning and I look at them and see such an innocent and sweet girl, someone who loves everyone, who wants to be included in everything, who wants to have fun, play toys, go to school, and do all the things a typical 7-year-old wants to do. I remember her excitement seeing this little unicorn while my heart was silently hurting in the background because of the session with the psychologist just hours before. Her pictures are beautiful and fun and just capture everything they should have. I am going to have them printed for our wall as a message of hope, something I can look at and remember to push, to be an advocate, to do my best to support her. I am going to do what I can to learn what I need to, to continue to be her teacher in the background to help her to learn, to show her those basic skills that I was told she will struggle with. I don’t know if she is going to wake up one day and be different than the way we see her today but I am going to just keep fighting for her. I am going to try to push through this lonely and scary path and get us to a better place where she doesn’t feel stupid, where she can feel happy and loved. I don’t know what next steps are but I have goals and I have dreams and I am not ready to let them go because of this label, this label that already doesn’t allow us access to resources that we need. I am ready to fight against these odds and these tears and give her my best because that’s what she deserves. She is special.
thirtysomethingjourney 