Things have been hard...very hard. The atmosphere around the house has been tense at times. I could share pictures of my cute kids (which they are) and share all the funny things they say (which they have); however, life sometimes serves up hard times. And things have been kind of messy around here. No clear direct path to the answer. And for my brain that is difficult. I want resolution and solutions, and I want the problems fixed, and fixed yesterday. I am not patient, and I want immediate results. I don't want to wait.
Being a special needs parent is tough. There is no manual, there is no one telling me what to do, and what step to do next. There is no one feeding me the answers so I don't make mistakes or mess up. And I know I mess up. My hearts longing is to make all the right decisions for my kids. But reality is that I am going to mess up. And I do mess up. I always worry that I am not doing enough, or that I am doing too much. Or that I missed a specific therapy that we should have done, or done one that we should NOT have done. Are they on the right meds? Should they be on meds? Should they be eating that or NOT eating that? Sugar...no sugar? How much screen time...ahhhh the list goes on and on.
And then their is the voice of guilt in my head...I hear it chastising me over choices made or not made. Should we have gone gluten free? dairy free? sugar free? Am I giving them too many choices or not enough choices? Are they going to end up in therapy someday because we didn't do sports, or after school activities? No matter that our after school activities include trying to the loads of homework or appointments/therapies.
Then there is the sadness and grief over how I wish my life was sometimes. Not always do I look through that lens; but sometimes the waves are huge the surprise me and hit me out of no where. A few weeks ago, I was shopping at Walmart. Luke had outgrown all his pants seemingly overnight. The printer had ran out of ink during the all important making of the science fair projects. So off Luke and I ran to Walmart to pick up pants and ink. While he was trying on a zillion pairs of pants, I caught sight of his shoes (which were worn). After we had selected the appropriate pair of pants, we wandered the isles to the back of the store where they display the shoes. I found a good looking sport shoe that would last until we could find something of better quality. Shoe shopping with Luke has always been difficult. Due to sensory needs, he prefers his shoes to feel and fit the exact correct way. It tries my patience every single time. I turned to show Luke the shoe, and found he had wandered to the end of the isle. Right in front of the Velcro shoes. "Mom I like these," he told me. I eyed the shoes. They were black with orange highlights and had three black Velcro bands that sat across the front of the shoe. They were like the kind he wore when he was 4. I thought about my words very carefully. "Buddy, you are 15 years old. You need to find some shoes that tie." "But mom," he argued, "I can do these shoes. They are easy and I don't need help." I agreed with him in my mind. "Yes", I told myself, "the kids at school will get one look at these and they will eat him up." My heart literally broke in that moment. My boy, not caring what people think wanted the shoes that he could do independently. And here I am having that moment... that 15 year olds should want to wear NIKE's and not Velcro. We ended up reaching a compromise, without him knowing any of my thoughts. There were a pair of shoes that were Velcro but did not look like Velcro. God bless the designer who made these. After we returned home, I went up to my closet and cried. I wish it wasn't so difficult for Luke to tie shoes. I wish he could fit in with the other kids at school and not stand out. I wish for so many different things. I wish everything wasn't a challenge for him.
School this year has been very difficult. Much more difficult than last year. I am not sure why, and I have spent many hours wondering this. Perhaps the kids have been tougher on him, or he has not matured as fast as the other boys, and they notice it. It is so trying on my mama's heart to watch him go through the struggles, and see the tears, and hear the hurt. On one particular difficult week, I stopped in to have lunch with him and play Yahtzee during his lunch recess time. I wanted him to know that someone cared, and was rooting for him. Most of the teachers at Luke's school, understand his needs, and help encourage him. Many times this year, I have been told by various teachers what a good heart Luke has, or how he helped them, or did something kind. I use these moments to feel encouraged that I am doing something right as Luke's mom. That his character is so much, much more important than his grades. As a former teacher myself, it is difficult for me to do this, but I understand that each kiddo is different, learns different, and goals in life are different. We have to celebrate the individual victories and triumphs that come along. Luke is the kid that buys Gatorade for the kids sick on the DC trip, or carries boxes to a teacher's car after school, holds open the door for EVERYONE, and is the first to volunteer. Gosh, I love him.
The school work has been very difficult too. So much that has challenged him, angered him, frustrated him. But somehow we have both banned together and worked our way through it. I couldn't have done it without the help of tutor that comes to the house twice a week to help me carry the immense load of work. Stress is a real thing for kiddos with special needs. Luke feels it and deals with it in ways that he knows how (sometimes ways that are not very constructive). ADHD is real. And from my latest research and studies on this disorder, the main concept that continues to be shared by authors, doctors and articles is that ADHD is an executive functioning skills disorder. At first I was like, "what the heck is executive functioning skills?" But the more I researched, I found out that those skills are used in every part of our daily lives. From organizing yourself to get up, get dressed and all the skills that go with that, to staying focused and attentive in class, keeping track of assignments and homework...it's all related to your executive functioning skills. It is so so difficult for these kiddos with ADHD to be organized in any area. I am learning, as Luke's mom and advocate, how I can help this summer to work on some of these skills. As long as there is a breath in me, I will be continuing to educate myself, to educate Luke on how he can do more, be more and embrace the amazing human he is, and share his gifts with the world. I will continue to build him up and encourage him, and to speak back to the voices that tell him "he can't". To which I say, "yes you can!" We need more Luke's in the world. I am so very lucky to have him in my life.
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