Hard to believe that in 31 days, it's the end of the school year already. One year completed of Early Childhood for Brayden and on to 4K and then Bennett will be a first grader! We survived! We had a few bumps in the road, and it seems there are a few roadblocks ahead, but nothing we cannot navigate. We have finally gotten respite care in place for both kiddos. WHAT A PROCESS! Why is something that is so desperately needed for parents of special need kiddos such a lengthy and almost impossible process? For those who aren't aware of what respite is, it's the ability to have a parent support person come in and help with the kids or even take them for an entire weekend. It gives the caregivers a break from the demands, or in the case of working parents, it gives them ability to have piece of mind if trying to do too many things at once. So for example, both of my children are special needs which means a multitude of appointments in every which direction possible. It allows me to have someone come in to watch/care for one child while I take another child to an appointment. With being a single-income family, having this helper is a huge benefit, and they even get paid to help out. They can also just come in and watch both kids for a few hours so my husband and I can have a date night, or if I just need to get away for a bit and my husband is at work. We all have those days in general, even without kids, where just having time to take a breath and step away is vital to our mental health, and this allows the ability to do so. If there is anything I have learned, it's that my youngest cannot go more than 30 seconds unsupervised, and that's with a child proofed house! The amount of destruction that can happen in even 30 seconds is sometimes unfathomable! He has also become what we call in our house a "Poop Picasso" and has painted both walls, bedding, and our couch. YUCK!
I am slowly working on starting a parent support group in our area, just for other parents and caregivers to get together and vent, cry, laugh, with no judgement or repercussions. If I have learned anything with this diagnosis, is how vital a support system really is. One thing I always remind parents, whether they are neurotypical or neurodiverse is that you are the professional of your child and know them best. Just as some doctors are specialized in orthopedics or wound care, etc., parents are the professionals on their child and don't hesitate to remind other professionals of this. There are times I have taken a child to see a doctor because behaviors have changed and most of the time this is their way of communicating something is wrong. Brayden has a very high pain threshold but is also non-verbal so he is unable to tell me if something hurts or he's not feeling well. Increased behaviors and mood swings are his way of trying to communicate with me that something just isn't right. I often feel judged because I feel healthcare providers often see me as a hypochondriac: the mom who takes her kiddo in for every little bump and bruise. What they don't see is how much I've tried dealing with things at home and trying everything I can possibly think of before I even scheduled the appointment, sometimes even because of this judgement. Autism is not a linear disorder, nor is it black and white. It is also not visible to the naked eye and I feel many providers and nurses forget this. Having the label also I feel inhibits proper medical care. They see the diagnosis on the chart and automatically attribute it to ASD, "oh that's just Autism", "every autistic child has that". They forget to see beyond the diagnosis and see the human being and burnt out parent who has tried everything in their power before coming in because of this label as well. It's not something they will outgrow, it's not curable, it is ever evolving and ever changing from days to seconds. Family members are generally almost always in a fight or flight state because they're constantly waiting for the "next thing" to happen.
As a parent I still grieve the loss of my career. The one thing I thought I was really good at and was successful with, now I'm just a chauffer, driving my kids to appointments every which direction. I lost a part of me and with their needs I often question if what I am doing is enough. Am I advocating enough, am I focused enough on them and providing the right things, what do they need that I can afford, what do they need that I can't? What more can I do to help them and am I even doing a semi-decent job? How can I ensure they thrive? I miss the social aspect of work, the family I had there, the feeling most days of a job well done and helping others, and now, I'm just here trying to manage day to day and manage a calendar full of chaos and appointments (and it takes three calendars and even then I'm good at missing something!) But I also knew with my husband it had to be me who took the change and try to manage everything because of my medical background.
While change is often challenging, just remember this: you are the professional and you are their voice. Never stop challenging others or asking questions and in this journey, NOTHING is a dumb question. Hang in there to those who are on a similar journey and thank you to those who support us and ours.
Make sure to subscribe if you want to follow along and don't forget to comment too. I love hearing from everyone!!
Comments