Ok, now that that is out of my system back to the regularly scheduled program.
Our son was diagnosed at the age of 3 with Asperger's. At the time we were told that he was extremely intelligent, which he is, and very high functioning (in autism world this means he is "mildly" affected by autism). We were told that while he showed signs in toddlerhood and through elementary years, if we worked hard and got him the interventions that he needed he would most likely be completely integrated and function well by middle school. My ears and heart took that as "as long as you are a good mom, he will be fine by middle school."
Let me tell you, we are far from fine. In fact we are struggling more now than we were 3 years ago. I feel like I have been cheated and lied to. Where is our "functioning well" in middle school? Currently, he is being homeschooled because of the non acceptance by peers and behavior issues he had throughout elementary.
We did everything that they asked. I went to conference after conference to educate myself. I read 1,000s of books. We implemented 100s of parenting techniques and therapeutic supports. I took him to appointment after appointment for different interventions. I attended countless meeting to advocate for his needs. We saw this doctor and that doctor, this therapist and that therapist, for evals and assessments. Literally, we have had BSCs, MTs, and TSSs in our homes for 1000s of hours since he was 3. Our entire family has sacrificed for him. And he isn't better. In fact, in many areas he is worse.
Recently, we received another diagnosis. Often with Autism Spectrum Disorder, or ASD, as Asperger's is now referred to, it is common to see comorbidity (meaning more than one) of diagnoses. This is his 3rd diagnosis (ASD, ADHD, and Depressive disorder). This kiddo is 12 and has 3 diagnoses. It is heart-breaking. It is discouraging and extremely upsetting.
This week I have finally come to the conclusion that this is never going to end. His struggles are never going to end. They may look different over the years but they are never going to end. And I am angry.
I feel lied to and cheated. I see these other kids with Asperger's and they are functioning. They fit it. Meanwhile, my kiddo fights off suicidal thoughts. He doesn't really have friends. He isolates and chooses to be alone. He is angry and lashes out. He cannot function without medication and even with the medication struggles to carry out tasks on his own. He is insensitive. He speaks inappropriately. He cannot stay on task. He is wickedly smart but cannot focus enough to complete a 9 question quiz. He picks and picks at people to get their attention and ends up annoying the crap out of them. In turn they begin to pick on him (he is a provoking victim).
He just doesn't fit. He struggles in school. He struggles at home. He struggles in the community. He is becoming anorexic (which I am trying to keep them from diagnosing him with. Does he really need another?). He cannot fall asleep for hours. I don't sleep because I have to wait for him to sleep otherwise he walks around the house, eats weird food, plays on tech until all hours of the night. I live in fear that one day he will really hurt himself because he explodes with such self-hatred. I dread the day that we may have to finally have him in-patient.
Social interaction, ha. We have tried social skills groups, team sports, church functions, clubs...etc. He struggles in all of them. Sure you see a kid who is present and somewhat interactive, although inappropriate. What you don't see is the 45 minute or more struggle to get him out the door. You don't see the signs of a meltdown because we do and get him out as quickly as possible so he isn't embarrassed by his behaviors in front of you. You don't see the arguments and tears in the back hallways as we are trying to get him back out there with the other kids.
And please don't get me started on his obsessions. I just can't even stand to hear one more sports fact or see even one more sports card. I just can't even.
You admire us because we are such involved parents, but really we would love to just stay home because we are with him all the time. But we can't because when he has a meltdown most people can't handle him. Heck, we can't handle him sometimes. We have to be there or else he doesn't do well. We have tried to let him go to things on his own and most of the time it becomes disastrous over time and even with us there it can be a struggle. Volunteers, who are already giving up so much of their personal time and I love them for it, get frustrated because he is inattentive, inappropriate, unfocused, a discipline issue, and can be allaround difficult. I don't blame them. We live it daily and he can be exhausting.
I am weary and tired. I am angry. This was not the plan. He was supposed to be better by now. I am sad and grieving for the present I thought we would have. I cannot even imagine what his future may look like. And now we have another obstacle and barrier? Another diagnosis to learn about and cope with? Seriously?!
When we talk about kids like my son, we focus on the success and achievements. I hear parents say things like, "it was really hard but so worth it when I see where she is now" and "all the pain has brought us to this beautiful place" and I agree. It is really hard. The pain can bring beauty. But that is not what a parent who is in the middle of the hurricane of difficulty and pain wants to hear.
We want to know that what we are feeling and grieving is not abnormal and weird. This, sometimes, unbearable pain of watching your child struggle and lose time after time does not make us bad parents. We need to hear that we are loved, our kids are loved and our family is accepted. We need friends who won't get tired of hearing us talk about our kid and their struggles. A friend who insists we leave our house even though we haven't showered in days because during our child's waking hours we can't find the time and are too exhausted to when they finally fall asleep. A friend who lets us scream and rage because it is so dang painful, hard and exhausting to have a child like ours. We need text messages and calls just to see how we are doing. We need dinners when we are going through a hard time. We need constant prayers. We need a community to come help us parent. We need a community to love and accept us.
Our other children need extra doses of love and attention because we are struggling to give it to them at home because our other child takes up so much of our time. They need playdates to get away from the house for awhile. They need someone that will talk to them about having a sibling who takes so much from their parents and not make them feel like they are a bad kid for feeling jealous, angry and frustrated. They need a community to love and accept them.
We need you to educate your children about our child. Don't know what to say to them or how to help? Ask us. We would be delighted to educate you. We need you to, this is tough to swallow, make your kids include our's. Imagine your child alone on the weekends hanging out with his parents, not getting calls to go over to friend's houses, not hanging out with a group of kids during the football games but insteading walking around by himself. Heartbreaking isn't it, but it is what we see weekend after weekend after weekend.
When they aren't included, it becomes incredibly hard for us to teach our child appropriate social skills. They need to be involved in relationships other than just familial. It is important to realize that although they are in a corner by themselves acting like they don't want anyone around, many times they are craving interactions but don't know how to ask for it. So go. Go ask them what they need. They may not be able to verbalize it. You may need to just sit quietly with them so they aren't alone. They need a community to love and accept them just as they are.
I know God chose me to be my son's mother. I know I am the best mom for him. I know Jesus loves me and my son. I know I can do this with God's help and strength. I know all these things in the deepest most secretive places of my heart. I remind myself of them hourly, somedays minutely. I hold on to these truths for my life and rest in them.
I am thankful I serve a God who doesn't make mistakes because the way my son's brain works is not a fluke and mistake. God carefully and lovingly created him just the way that he is. I may not understand why but that doesn't matter because my Almighty Father does. My children are a blessing to me. My hardest and roughest days do not shake my thankfulness and knowledge of God's love and goodness. They can't, because if they do, I have nothing to stand on. I refuse to dwell on my feelings. That is a dangerous slippery slope for me.
Sure I question God. Sure I get angry at God. Sure I cry and yell at Him. But my Lord can handle it. When I am done throwing my temper tantrum he grabs me up, wipes my tears and hugs me. He strengthens me and I go back out there and parent some more.
However, all that being said, that doesn't let you, our community, off the hook. We still need you. Ever wonder why you know us? Maybe because you are supposed to be the hands and feet of Jesus to us? Maybe Jesus designed you to be our cup of cool water?
There are 10s of 1,000s of families just like ours all over this world. The statistics of individuals with autism, ADHD and depression, just to name a few, are staggering. I can only speak my family's personal truth but I know enough families to know that we all need a community. We all want our children to be loved and supported. We all want to be accepted. We all need you.
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