It has been a tough couple of weeks for our family. D is getting older. He is stronger, faster, bigger. His future is uncertain and that is a hard pill to swallow. Parents have dreams, ideas, hopes for their kids. Bio, adopted, special needs or typical. It doesn't matter. We see their future in our minds and have a picture of what that should look like. Oh it is a beautiful picture. The sky is the limit! Sometimes reality is different. Sometimes we have to let go of our vision of happiness and accept and embrace a new one. One that isn't necessarily unhappy and bleak. Just different. We have to grieve that old "idea" in our head and embrace a new one.
You see.... we have tried all the sensory, therapies, meds, we have been more strict, less strict, no reaction, different reaction! We have given rewards, restrictions and built a home and yard of Disney like proportions! We have cried ourselves to sleep and begged God to fix his broken parts. Broken isn't always beautiful. Sometimes it just sucks! We have done all that we can do with our bag of tricks. To no avail. The hitting, yelling and throwing... the damage and hurt continues. The pounding on the wall, the kicking, stemming....these aren't tantrums. This is brain damage. This is beyond Down Syndrome. This is Intermittent Explosive Disorder. This is Oppositional Defiance Disorder. This is severe sensory dis-regulation. This is survival.
There is no easy answer. There is no simple explanation. It is just reality. It has always been a part of who D is. It cycles and there are hills and valleys but those valleys are getting more concerning. D has to be safe. His siblings have to be safe. Sometimes special needs families have to call a Code Red and draw a hard line in the sand. This is when mama bears fall into a puddle of ugly crying and hot mess or a raging bull seeking resources. I chose all of the above. If you are in my inner circle or within the state of Florida you have likely received my SOS. We are exploring several avenues for our son. We will leave no stone unturned and we will not dismiss any possibility. We will do what is best for D even if it doesn't look like the future we planned for him. Even if it is not popular with others. We will parent our child the way we know he needs to be parented because WE ARE the experts! We know his triggers and needs and wants. We can predict them as if ESP is our second language. We know if it will be a good day or a bad day the moment he awakes. We know. Others will question, recommend, suggest, intervene............ but we must stay the course. Because we already know what doesn't work.
To the other moms out there walking hard truths, I see you. I hear you. You are a good mom. You didn't miss something. You didn't fail. You didn't do anything "wrong". Sometimes success isn't inclusion, limitless potential, independent living... Sometimes success is a day of no hitting or even an hour. A meal without throwing. A nap without fecal smearing. You are still a good mom if your child is in a typical classroom, a self contained class or a residential treatment program. You are parenting your child the best you can with the tools and resources you have. As mothers we carry the heaviest of burdens. We are the fixers. We know and love our child like no other human on this planet so surely this is our fault? If we had been more patient, tried harder, maybe the next person will have the answer? Ill call another friend..... I'll try that new therapy, that new med, that new purple weighted blanket with the soft mink cover......I'll try and try and try.... It is not your fault, you are not to blame. There is nobody to blame, sometimes the only thing left is acceptance.
It is not all doom and gloom mama. You can still delight in the joys. Joy can be found in the greatest of accomplishments or the small and mundane. Don't be sad mama. Find the smallest thing and soak it up. You are loving your child through the hardest of hards. You are not alone and because of your unending love neither is your child.
I love you D. I will pick up the pieces of this broken chair along with the pieces of my heart and I will find the joy in being your mama again, however, wherever, that takes us.
