It’s been a while since I’ve published. I write things weekly but mainly keep them all to myself. I’ve been at this one for awhile and it’s something I think the world needs to hear. Knowledge is power and people cannot understand these kiddos and the struggles their families go through unless we share them. ❤️💔
Haven is In a season, which has in turn, forced all of us into this season with her. It is not a good season, it is not a pretty season. In fact it is rather painful, but I pray, oh dear god how I pray that this season will pass. And our lives will get a little less dark and a tad bit easier.
Covid was and is a weird thing. It was a blessing and a curse for us. I was able to get more time with my babies, we did lots of new things and made so many memories, but Haven’s very rigid and constant schedule crumbled fast, leaving me to navigate alone. Leaving me as her ABA Therapist, Teacher, and Momma. Reeling and grasping at straws to try and help my girl while keeping Mia and i sane and safe.
Now that Haven is in school and we are trying to get back to all her therapies and routines it’s a better gauge of how far she has fallen but also just how much she continuously changes. I’ve watched as she’s struggled to understand her peers and them struggle to understand her. I would be lying if I said my heart didn’t ache for Haven. We have a great school, great friends, and people that truly care. Still though some people just do not get it. Until it’s your baby or your life or your pain. This is why it is crucial to there being better training and more awareness in communities for those on the Spectrum. Also do your part and Teach your kids that not every kid is the same. You are doing the entire world an extreme injustice if you are not. It’s 2020, ignorance is no longer an excuse.
We started back with ABA this week. ABA can be a lot but it is a God send if you have the right people. We are blessed to have Anna again, who we originally started with at Haven’s center. She knows Haven. She knows Mia and I. Having her in our home feels natural. Yesterday was day two with her, we’ve been doing very long sessions and irritability and instability was rising quickly. We ended up with a 2 hour meltdown. This isn’t abnormal for Haven anymore. They are so long and she gets so violent. It feels like they will never end. But for the first time in a long time I was not alone. And that in itself is comforting. For the last few months I’ve been at such a loss on what to do. I’ve felt like I’ve been drowning alone, struggling to make it through the day’s and see the light. Haven is ever changing, as are her needs and struggles. Her Autism presents very differently than it did at the beginning of our journey or even the beginning of this year. It is so refreshing to have someone to bounce these thoughts, questions, and worries off of and to know in that aspect I am no longer alone. As hard as these times are I am confident between all of our therapies and medical teams better days will come. Haven has Autism, Autism doesn’t have Haven. That will prevail.
Something I rarely talk about is the days and nights after her meltdowns. It’s like a traumatic hangover as weird as that sounds. My mind and body usually feel as if it’s in shock. I am exhausted, beaten down, sad and mad and basically every feeling on the earth. And a lot of times so very numb and lonely. The loneliness in these moments are all consuming. I cried myself to sleep last night and have yet to stop. My heart hurts. For Mia who endures so much. For myself who feels so lost in this. When I say people don’t get it, I mean they don’t get it. And then there’s Haven, who today has a goose egg on her head from smashing her head and a raspy voice from screaming with everything she had for hours and who’s body likely feels like it got hit by a Train from fighting so hard for so long. And then I feel worse. Because as hard and scary as it is for me, I cannot imagine how scary and painful it is to be in her mind and body in these moments that drag into hours.
The biggest thing I’ve had to learn is Autism doesn’t pick and choose. It doesn’t take a break for birthdays or vacations. It doesn’t subdue if you so desperately just need one good, peaceful day. It pushes every boundary. It stains your friendships and relationships and jobs. It makes you question and resent those around you. I hear so many times how parents wouldn’t change their children. I call bullshit. I adore Haven. Love her with every fiber of my being. But no parent would choose this for their baby. I would always choose to take the Autism away. Judge all you want but until you live it, you have no right.
I feel like My mind is so all over the place, if you made it through this rambling, bless you. I ask that everyone remember that you never truly know what anyone is going to and to continue to be the good and be kind y’all. I know everyone is so on edge from the Election and the world we are in but compassion and kindness are free and we could all use a lot more of it.