Another Child, Another Diagnosis
Last night was one of those nights that I went to bed feeling defeated. I hadn't done that in a long time. I've grown accustomed to my situation and this world of autism that is still so baffling. But for some reason, I got set off again.
Last month Chloe got diagnosed with PDD-NOS. It wasn't a shock to me as I watched her developmental milestones like a hawk since birth sensing something would be wrong with her. Wrong with her? Is that a proper assessment? But I just hoped that I would be wrong and she would be ok. Ok meaning normal? Ok meaning not like Daniel?
Now I have two kids on the spectrum and it is a lot to handle for me to handle. Me meaning me. The husband is in denial. Me, who everyone thinks is so great. I hate to break it to you folks, I'm not that great.
So as I laid in bed thinking about my kids, I just cried and cried and cried.
So I've come up with a list as to why I HATE AUTISM:
1. I hate that it has never given my children language. That because of their nonverbal abilities, I am constantly faced with two frustrated children that at times become aggressive towards themselves and others.
2. I hate when I hear, "it's a blessing." Are you kidding? Only people who don't have special needs children would say something dumb like that.
3. I hate that social settings, i.e anywhere that there is people, create frequent meltdowns and lots of tears. The kids' tears and my own.
4. I hate the lack of knowledge people have towards Autism. Don't assume every autistic child is alike. I can testify that they are not. I've got two autistic children now, remember? So before you say, "he/she doesn't look autistic" use google to enlighten you. Then rephrase your statement or just simply ask, "What is autism?" "How does it effect Daniel?" "How does it effect Chloe?"
5. I hate that Daniel has 5 teachers, a social worker, a psychologist, and a neurologist. Chloe has a service coordinator, an ENT doctor and 4 therapists. All wonderful people. I just wished I would've met them under different circumstances.
6. I hate that Adriana has to be so grown up. She's so grown up. She's only 6. She should be enjoying her life not walking on eggshells and making sure she doesn't cause a meltdown.
7. I hate that it's so hard to find a babysitter because they are afraid of Daniel. I don't take it personally though, I understand.
8. I hate that my husband is in denial. Daniel and Chloe are not being defiant. They just don't know how to communicate. They don't know how to be part of this world. Please don't judge my husband. You don't walk in his shoes or mine. It's part of the autism package.
9. I hate that I blame myself for everything. Because deep down, it's my fault.
10. I hate that I have to come to terms that Chloe and Daniel might never marry or have children of their own.
My list might be a tad controversial for some. But sometimes autism is raw and cold and selfish. So many unanswered questions. So much heartache and regret. I'm not one of those parents who see roses, butterflies and rainbows. Parenting is hard work, harder with daily challenges and special needs children. Everyday is a different day. But I'm honest and that's what keeps me going.
Last month Chloe got diagnosed with PDD-NOS. It wasn't a shock to me as I watched her developmental milestones like a hawk since birth sensing something would be wrong with her. Wrong with her? Is that a proper assessment? But I just hoped that I would be wrong and she would be ok. Ok meaning normal? Ok meaning not like Daniel?
Now I have two kids on the spectrum and it is a lot to handle for me to handle. Me meaning me. The husband is in denial. Me, who everyone thinks is so great. I hate to break it to you folks, I'm not that great.
So as I laid in bed thinking about my kids, I just cried and cried and cried.
So I've come up with a list as to why I HATE AUTISM:
1. I hate that it has never given my children language. That because of their nonverbal abilities, I am constantly faced with two frustrated children that at times become aggressive towards themselves and others.
2. I hate when I hear, "it's a blessing." Are you kidding? Only people who don't have special needs children would say something dumb like that.
3. I hate that social settings, i.e anywhere that there is people, create frequent meltdowns and lots of tears. The kids' tears and my own.
4. I hate the lack of knowledge people have towards Autism. Don't assume every autistic child is alike. I can testify that they are not. I've got two autistic children now, remember? So before you say, "he/she doesn't look autistic" use google to enlighten you. Then rephrase your statement or just simply ask, "What is autism?" "How does it effect Daniel?" "How does it effect Chloe?"
5. I hate that Daniel has 5 teachers, a social worker, a psychologist, and a neurologist. Chloe has a service coordinator, an ENT doctor and 4 therapists. All wonderful people. I just wished I would've met them under different circumstances.
6. I hate that Adriana has to be so grown up. She's so grown up. She's only 6. She should be enjoying her life not walking on eggshells and making sure she doesn't cause a meltdown.
7. I hate that it's so hard to find a babysitter because they are afraid of Daniel. I don't take it personally though, I understand.
8. I hate that my husband is in denial. Daniel and Chloe are not being defiant. They just don't know how to communicate. They don't know how to be part of this world. Please don't judge my husband. You don't walk in his shoes or mine. It's part of the autism package.
9. I hate that I blame myself for everything. Because deep down, it's my fault.
10. I hate that I have to come to terms that Chloe and Daniel might never marry or have children of their own.
I don't know if all parents of special needs/asd kids feel this way sometimes. But I do. Not all the time, and not all negative, but frustrated, heartbroken, overburdened, inadequate, regret, and guilt, guilt, guilt. Yeah. The worst, most negative moments pass. The fear of the future gives way to working on the present situation. We keep going, we love and do all we can for our kids. And we write, network, get comfort and support from other autism parents. And hope tomorrow is a better day. Take care of yourself, you are not alone.
ReplyDeleteLois!! My heart goes out to you. I will not even pretend that I know what your feeling or going through but it sounds painful. Yet I know that deep down you Love your family beyond belief and if given a second chance you wouldnt change a thing because they are your babies. They are precious no matter what! We may not always see the bright side to our seemingly unfair lives but you, your husband,Adriana, Daniel & Chloe were put on this earth to be together for a reason>one bigger than you will ever know. Trust in the Lord, he knows all and he put them in your hands because he trusts you will be the best mother teacher and everything for them. Its great to be honest, I know that feeling. I hate when I hear mothers say, "Oh i love being a mother its so wonderful" Though its great to have a child, most of the time is not wonderful, its freaking HARD! and its refreshing to hear some honesty about what its really like to be a mother, of children with autism non the less! I hope you know your awsome just because you are trying and being proactive about it. Writing is therapy, so write on!! Ill be listening, wishing you the best.
ReplyDeleteThank you both for your works of encouragement. I, as we all do, try my best. It's hard work but I'll be strong for them!
ReplyDeleteLois-
ReplyDeleteMy heart goes out to you and I am in awe of your honesty and candid words. You are an incredible mother in that you are honest about what it is like being a mother. God doesn't give us more than we can handle and for some reason he has given you three beautiful children (and they really are the cutest things)and two of them happen to be special needs. I can feel just how deeply you love them and because of that, you and your family will be okay b/c you are going to make sure that they are. Continue to hang in there and continue to write b/c writing I believe is THE BEST therapy. Hugs to you Lois!!!