Today is Halloween. My very own nightmare starts at 6AM. We wake up to tackle this not so SPD friendly “holiday” with a smile and hopeful optimism but that quickly fades. My DD is going to be the piggy bank from Toy Story because the costume is such that it just hangs over normal clothes with no buckles, straps, buttons, zippers, ties or elastic. We had planned piggy tails for her hair, which she never can tolerate, but she really wanted them.
When it came time to do them it was a no go. Okay, move on. Time for socks and boots. Her sock had a bump this morning..an invisible bump that isn’t really there because they are seamless socks but regardless this puts her in a tizzy for quite some time. Then we moved on to not being able to tolerate putting her stretchy pants inside of those boots. We did finally, after a complete disaster of a morning make it out the door but not without complete mental exhaustion setting in. As we get to class I start to feel the anxiety starting in ME of whether she will go in without a problem this fine morning.
This has been a constant struggle with us this year. That transition of leaving me, her comfort person, and going in the class. We have tried everything. Her teachers are saints I swear. For the last few weeks we have been giving her her weighted bear to bring in and I also hand her a piece of gum as she walks in for her to chew on through this difficult transition. It had been working fairly well….until this morning. Now she wanted nothing. She did not want to go home, did not want to swing, or do any heavy work. She finally brought me to the sensory room where she jumped for a few minutes on the trampoline and then we tried again. Nope.
I spent another 15 minutes sitting with her in hall trying to coax her in any way possible. Her teacher finally talked her in to swinging outside with her while I left. Granted it was 37 degrees, windy and raining but like I said …her teacher is a saint. So I left today and came home feeling whipped. Seriously frustrated, sad, angry, you name it. Tired of the endless battles that seem to define my life…HER life. Why must everything be sooo hard? Every morning is hard. Every transition is hard. Every look I get from people is hard. Every holiday is hard. Every meeting, evaluation, and doctor appointment is hard. LIFE is HARD!! I know I shouldn’t feel this way because I am so blessed to have this child and I love her dearly. She is generally happy, healthy, smart….but this SPD thing is TOUGH. It runs our life.
As I speak we have a friend that is going through a very serious surgery and I sit here feeling guilty that I ever ask myself or God why me?? Why me?? this is nothing right? We have our health! As a Christian I know that I am supposed to be thankful for the trials and challenges as they strengthen me and draw me closer to God, and I am thankful…really I am. But as a human I have fallen short and sometimes would just like life with this child to be easier. I know we all have challenges and this is what shapes us. I know I am thankful that God chose me to help this beautiful girl. I know I love her just the way she is. I know also that I am not alone in feeling exasperated right now. There are lots of parents out there that must feel the same at times right?
Well, this afternoon I am going to go back to school. I am going to put a smile on my face and attempt to go to both of my daughters parties. I am going to pray for stamina and most of all patience. I am sure at the end of the day, after the kids are safely tucked away for the night, I will lie in bed with a smile on my face and nothing but thankfulness in my heart..but right now it’s just hard and that’s okay too.
Comments
Maritza
Hello, I just wanted to tell you that I do understand your trials and struggles. My son is almost 3 and sounds a lot like your daughter. I never know how a situation is going to turn out, if a tag is going to set him off for hours, if me putting on a “wrong” pair of shoes is going to cause a 3 hour meltdown. Every day is definitely a challenge, but it is also definitely a blessing. I find peace in knowing that God knitted him to be exactly how He wanted him to be, and for that I am grateful. I hope your day turned out okay. You are not alone in this!
no nonsense
Thank you! She IS a special little girl and I wouldn’t trade her for anything. I do take comfort in knowing that God is in control of every second of our days and He will get us through! So glad to have friends on here who can support me on those hard days
Sybil
I thought I had a handle on SPD…until yesterday. Fortunately, my mother and husband were in charge of most things Halloween. But, I had to hear stories of the anxiety, tears, etc. It’s so hard! So glad to have this place, where I know there are people who understand. Thanks for sharing. Helps me know that I am not alone in this.
no nonsense
SPD can be a very isolating disorder…along with many others so it is awesome to have places like these with people you know just “get it”. The writing and support is therapy in itself. Thanks!
jesse
I’m right there with you. My son is 6 and started kindergarten this year and has been struggling a lot. Almost everyday I think why does this have to be so hard for him. Maybe some day it won’t be so hard.At least I know i’m not alone.
Heather Finnegan
It is hard, it is so hard! And I have asked myself, and God that question so often, why? And yes there are other people in way worse situations, but that doesn’t make what we and our children go through less hard.
Foodforthoughtlinds
I’m a mom of two little guys with SPD (1 and 2 1/2) and, I have to admit that I feel these exact same things on a daily basis. Completely frustrated and exhausted that every little thing with my little guys has to be so HARD. And guilty for even thinking that… we have a roof over our head, a two parent family, food to eat… what do I have to complain about compared to a lot of other people out there? But the daily battles with my two kids leave me completely depleted. I enjoy lots of times with my kids, but feel these are often overshadowed with the never-ending HARD moments. My only hope is that as we get more and more used to dealing with these struggles, I’ll be able to shift my perspective and not let them define our lives to the extent that they do now. Perhaps I will need to make that my New Years resolution.