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This statement uttered by so many, meant from the heart, based upon a person’s personal belief system in a higher power REALLY IRRITATES ME.
Let me explain. Praying that my child is miraculously relieved of his “suffering of autism” is incredibly offensive on many levels. First, we don’t need a miracle – we need a school district, medical and therapeutic team, respite provider, supportive family, spouse who can be home to help out…we DON’T need a miracle.
Relief from the most severe of his autism symptoms would be fast in coming if funding and research was appropriate, if insurance companies would pay for therapies – and even try alternative therapies, if medications would be created/investigated/prescribed to those with self-injurious behaviors, comorbid psychiatric disorders, metabolic and even genetic disorders.
My child isn’t suffering because of his autism. He doesn’t know what it is like to not have autism. Any suffering he feels would be because of lack of compassion, understanding, and FUNDING through the public school districts. Suffering occurs when other students, or even staff, bully and abuse my child. When therapists, other family members and others in his life refuse to learn about his disorder. When they don’t ask questions, or listen (really listen!) to the answers, when they don’t have an open mind and heart.
I don’t need a cure for my son. I need compassion. I need a helping hand every once in a while. I need an ear, a shoulder, a break.
I’m not looking for a miracle, I’m looking for society, family, and friends to be open to the realities of our life.
I’m not looking for a miracle.
Or, maybe I am.
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Kelly is a Navy wife and mother to three children; 16 year old NT, 6 and 5 year old boys on the spectrum; and, since life was getting a touch boring, she’s added a bun in the oven. Kelly has been featured in a collection of essays on special needs children entitled, “Wit and Wisdom From the Parents of Special Needs Children.” She can also be found at MyTidewaterMoms.com, and as a guest blogger throughout the blog-iverse. In her spare time, Kelly is the Blog Master for, and member of, the Military Special Needs Network Executive Board. You can contact her via email at KellyHafer@MilitarySpecialNeedsNetwork.com.
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Same goes for invisible diseases many suffer from, we do not need a magic pill (although it would be nice), we need support, we need compassion, we need a lot of things but yeah, most just don’t get what needs to happen…unless we shout it from the rooftops!!!!
Exactly. People are so quick to say things like, “Chronic fatigue syndrome…who ISN’T tired.” They just don’t get it at all.
Thanks for reading.
I’ll pray for funding…
Please do. And, if you have a direct line (either to The Big Guy, or a direct line of funding), let me know. 🙂
To be honest you seem pretty ungrateful. You should be happy that people care about you and want to pray for you – we don’t pray for “miracles” we pray for you to get the services you need; we pray for you to get support, we pray that everything falls Into place; I pray that you can appreciate that people are willing to pray for you and not be snarky about it, and I pray that people continue to pray for you after reading your post, because I’m sure they wouldn’t want to irritate you.
When I reread Kelly’s post, she is referring to people who want to pray her son’s autism away. I quote, “Praying that my child is miraculously relieved of his “suffering of autism” is incredibly offensive on many levels.” I am sure if someone actually prayed for the things you mentioned, she would appreciate it.
Yes. I appreciate the thought of someone praying for my son – not for a cure, but for HIM. There is a difference. Also, again, don’t *just* pray – educate yourself on his disability. Ask how you might be able to better interact with him. That sort of thing. It’s easy to say, “Oh I’m praying for you.” It’s harder to actively get involved and try to make a difference yourself.
Mary, you missed the point of my post completely. Not surprising, based upon your response. And, no, the person who said what she said is actively praying for miracles. You are speaking about that which you do not know.
I did not miss a point unless you were expecting a mind reader – your title is “I’ll Pray for Your Son” not “I’ll Pray for a Miracle for Your Son” – the only place you mention anything about the prayers being specifically for the miracle of a cure for Autism is in your 2nd paragraph; but the way you write it seems more like you are assuming that’s what they mean, not that they actually said “I will pray for a MIRACLE CURE for Autism” – Again, your title makes it seem that you are angry and annoyed with people who are willing to “pray for your son” – and I am not speaking about that which I do not know because I have a son with SPD and ADHD, and a daughter adopted from Ethiopia 5 years ago at the age 11 (now 16) who has RAD, PTSD, Emotional Dist., Oppositional Definace Dis., Personality Dis., and processing problems; she acts like an 8 year old when she is 16, so I do know your suffering – only difference is that I actually WISH I had supportive friends who cared enough to pray for us. I wouldn’t complain if they offered to pray.
Not trying to beat a dead horse here. I’m not going to argue with you about my post. If you don’t like it, you are certainly free to say so and move along.
If you are in the military, we’d love to see if we can do anything at all to help you and your family. Please message me and let me know if that is the case.
Kelly, it’s not a matter of me not liking your post. I’m just trying to help you in that I think you are angry at the wrong people. Not everyone is equipped to help us and sometimes praying is all that someone can handle.
Yeah, sounds like you kinda missed the point. It is nice to have people who care…but it’s like saying, “I am so sorry your son was born black…I’ll pray he’s cured of that horrible affliction” that’s more in line with what I think she’s saying.
Sometimes the things people say out of concern can be extremely inappropriate. Can you IMAGINE someone saying that? It’s not the same…but it is the same. The hypothetical black son doesn’t need to be cured of his race…he needs people to be cured of their racism. HER son doesn’t need to be cured of autism. He needs people to be cured of their stupidity.
Thank you for putting that into words, Jim, I was having trouble finding an analogy. Eloquent as always. And I have no problem with anyone who wishes to pray for my child, so long as it isn’t a substitute for taking substantive action. I think that is one of the main points here.
We do not want you to pray for our specific child. Trust me, if you took the time to learn every child on the spectrum, and all of their individual differences, you would learn there is not enough time in the world to pray each and every child is cured. Besides that we (ok “me” and maybe a lot of other parents), do not want our children “cured”. We love them just the way they are. Having a child on the spectrum is stressful but comes with a sense of pride and accomplishment. If you are going to pray, then pray for society to become more educated. Pray for a month of awareness that our children do not share with 4 other epidemics. Pray for the government to recoginize our children in all their vast differences. Pray that the littlest difference does not get them thrown out of the services they need. Pray that the stranger in the grocery store has enough compassion to turn around and walk away, instead of offering us their adivce. Pray that other children have to compassion to accept our children for all that they are. Pray for our families, who may not understand. Pray for the siblings who will inevitably feel some isolation due to the time consuming circus that is each and every day. Pray for the parents that will never hear the words “I love you” becuase their child is non verbal. Pray for the mother and father who had to put aside their dreams for their child, those dreams all parents have when they find out they are having a baby, becuase those dreams may not be the path our child takes. And please, please pray that society NEVER again stereotypes our children by making the fact that someone is on the spectrum, the cause or excuse for a tragic event (like the recent school shooting). And while you are at it, pray for your own patience and understanding in the ability to sit back and remember what mothers have taught their children for generations…”If you cant say something nice, dont say anything at all”
Prayers can’t hurt… if nothing else. It gives strength when we feel weak. So we can advocate and be for for our “special blessings”.
Thanks so much for this. When people tell me they will pray for me, it comes across as a platitude meant to pacify my family. I certainly do not find it supportive. I am a Christan and I do believe in the power of prayer. If they want to pray here are the things to pray for: proper services and an adequate learning environment, a great support system, insurance companies that are not out to scam families, a society that actually cares.
EXACTLY. And perhaps I didn’t make myself clear. Pray for something that is NEEDED. Again, I don’t need a miracle. I need for the teachers to actually follow the IEP. For the pediatrician to be quicker to give referrals. For the therapists to not put my kid in a metaphorical box.
If they take these prayers to their minister, to take to their congregation, and that congregation includes their Senator, then that prayer – repeated – may, if very carefully worded – effect change. Miraculously.
Nailed it. Nailed it so hard.
Thanks, Lexi! ❤
I totally understand what you are saying! I have members in our family who continuously pray that my 11 year old will talk … Yes, I have hopes of that as well. However, when these very same family members (and we have had friends who have said it too) say, Oh I don’t know how you do it and we will pray for you, I am just like thinking, “Instead of praying for an answer or a solution, why don’t you become an active part of the solution? Help me by trying to understand why she doesn’t talk. Learn about ways you can engage her instead of letting her sit off by herself while the other kids run around her, ignoring her! Etc, etc, etc!” That is what I am sure you meant by this post and the fact that some people don’t get it just proves the point. While I appreciate prayers, if you really wanna do something, educate yourself, advocate and support in some other way that saying a few words to a higher power …. because trust me, prayers have been going up for years and not much has come from it but you would be amazed at what helping with my child(ren) for an hour or asking me questions about their needs does for my spirit!
You said this much better than I did – want to write a blog post?! 🙂
Pray for us, sure. That is nice. It is appreciated in a vague, ethereal kind of way. But, if you want to help, DO SOMETHING. Read a book on autism. Join a support group. Ask if I need help advocating? If I need a babysitter for my other kids so I can take my autistic son to therapy. Ask if you can better accommodate his needs at playgroup.
Be part of the solution.
Mary, I don’t think you understand what she is saying here. Praying doesn’t do a lot of good when there’s no action behind it. When you don’t do more to help. If you can’t help this person physically, you can advocate for change within the military so that people with children with special needs, and people with special needs themselves get the support and accommodations they need.
Prayer is all well and good, but sometimes, I feel like when people say they are praying for me, it’s an out so they don’t have to DO anything for me. Maybe that makes me ungrateful.
It’s easy to pray and give it to God: that way God takes the hit when things don’t work (ala God’s timing is perfect!). When a person, a real live person, puts his or her butt on the line, makes a commitment to help and stuff falls through, the onus is on them. A lot of people don’t like that.
Hey it doesn’t matter if you are in the military or not – there’s not a lot of support for ANYONE – our schools, our therapists do NOTHING for our kids and we are not military. My daughter is in 9th grade and on a 3rd grade reading level and at her most recent CSE meeting they said that once her emotional problems clear up that she’ll be fine academically… Yes she is miraculously going to get over her emotional problems that are only getting worse, and then she’s going to jump up 6 years in her reading skills – IDIOTS are the problem. She needs a therapeutic residential program but that’s never going to happen because no one cares.
Honestly–this concept of prayer isn’t what Jesus would have done. Or his followers. He would have commanded those around him to care for you–WITH ACTION–and not words. For surely THAT would be the right thing to do.
we are so enamored of words that we forget the deeds.
Thanks, Dawn. I appreciate that. And, I love that sentiment. Thank you.
Sounds like a damn miracle to me. You want a large relatively random group to suddenly change their opinions?
It would be fantastic and fix most of the problems facing parents of children with disabilities all over the world.
I know, right?! *snort*
Prayer is and can be a wonderful way to keep someone in your heart and thoughts and to appeal to God on their behalf. It is nice to hear when someone is praying for me or my family; it feels good to know they care and are thinking of me. To me prayer is a conscious way to connect to what I believe in, it is also a way to connect me emotionally to anothers as human beings, to think carefully about what another might be experiencing. Sometimes, in extreme situations or when I am far removed physically from people or situations it may feel as if praying is all I CAN do. But as much as I believe in the power of prayer, there are so many other concrete things we can do for others. We can’t solve humanitarian crises in places overseas; but we can fund charities and write legislators. We can’t end poverty or homelessness; but we can volunteer at shelters and donate to food banks. And you are right; praying to cure autism is probably not as meaningful to an autism parent as offering respite care, learning about what autism is and isn’t, recognizing how unique and beautiful someone’s child with autism is. Offering a cup of tea and a shoulder after a tough IEP meeting. Supporting organizations that support individuals with autism. Sometimes we need a touch as much or more than we need a thought.
Great post! I to am a special needs mom and military spouse. I have an 11 year old son with Autism and our baby girl with Down Syndrome who passed away a couple of years ago. I just had this prayer discussion this morning with a slight twist. I wish people would “get” that we could use your “active” prayer like compassion and understanding. Reminds me of the difference between, “let me know if I can do anything for you” and the person that shows up and does does something for you because they are compassionate and can “see” what they can do.
I have been disappointed with military support for our son but we have been in a good school district.
My military experience for our daughter is for another time and post. I can’t believe I never knew of this network. Thank you!
I am so sorry to hear of the loss of your daughter. I have a few friends who have children with DS. I’m learning very quickly that valuing life takes on a whole new meaning to DS families. We’re here if you need or want to vent, grieve, rage or anything in between.
Welcome to MSNN, Momma. We’re happy to “meet” you, and look forward to learning more about you – and learning if there is anything that we can do to help. Come check out our FB page: Military Special Needs Network. We have all sorts of families helping each other out with support and understanding, practical answers, and things that have worked for us when navigating the mess that is EFMP, ECHO and Tricare.
Thanks so much for taking time to read and comment. Hope to hear more from you soon.
Amen, Kelly! I am a Christian too. And I pray pretty regularly. YET, it still bugs me when people say these sorts of things. Especially because so often I feel that the people are just giving me the brush off. Sure, pray for me as often as you want. But if you see me really losing it and in need of big help? Yeah, prayer probably isn’t what is needed. Instead, maybe a kind word, an offer of help would be more beneficial. And yes! I don’t want a cure for my son. I want people to understand, to put money towards the things our kids (and the adults on the spectrum) needs.
I guess it just seems so dismissive sometimes, that offer of prayer.
I just want to put it out there that not all moms of special needs children agree with your position. I have a special needs 16-year-old son and a NT 14-year-old daughter. I would love for people to offer to pray for miracles for BOTH of them. If that’s all anyone ever offered to do for my children, I would be grateful for it. And as a side note, we are retired military, not that it matters in the context of my opinion. But in case anyone wondered, there’s no need to offer to help us from the militaryspecialneedsnetwork. We’re doing great! So, with all of that said, I will pray for miracles for you, your son, and your other children as well.
I came to this via Flappiness Is and her share on FB. I confess I’m not sure what to think about the post, parts I agree with and parts I don’t and parts make me want to cry. I have 4-year-old triplets – all girls – and 2 of them were diagnosed with autism less than a year ago.
I actually do believe in a God who could heal neurological issues miraculously, but I don’t believe it always happens. Maybe I’m crazy or unenlightened, but I welcome the prayers of others for miracles of all sorts (the miracle of attaining ABA therapy before the girls age out, the miraculous disappearance of the autism diagnosis & that they would be Neuro typical, and all of the things you ask for above too). I guess I don’t feel offended when people offer to pray since they nearly always ask “what should I pray for” and also “How can I help right now?” I guess it’s because I pray for those same things: better ability to get needed therapies, compassion from others, awareness of the disorder from others, and dang it all, yes, a miraculous change in their brains to allow them a more normal, more typical, perhaps a more fulfilling life in the future. Is that wrong?
I will never stop advocating for my daughters and what they need, but sure I’d take a quick and easy way out of this difficult journey we’re all on. Maybe I haven’t gotten to acceptance yet, maybe I’m still in denial, I don’t know, but I don’t think I’m at the place where I think of autism as the same as the color of someone’s skin. I love my girls immensely, but yes I’d take an easier road for them and for me too if I could.
I agree Kelly its the feeling of rather than actively DO SOMETHING PRACTICAL, i will pray for you. Alot like the “WE LOVE HIM” statements i get referring to my profoundly disabled son, yet they see him once a year and really have NO CLUE whats actually happening in his life unless they read it on my fb page.If you want to help or really “love him” write a letter to the local MP for more services, give him more days of quality time so he knows you actively love him,offer to give me (sole-parent here) a day off so i can continue to take care of myself too,whilst we wait for the MIRACLE your praying for we continue to battle, tire and live! I have nothing against prayer and yes believe in God but when these are used as the easy road to NOT ACTUALLY DO ANYTHING to physically help, it irritates ME TOO!
Oh my gosh – the “I just love him!” Thing is next on my list to write about. It kills me. If his teachers and special ed staff (the most frequent offenders) *actually* loved him, they would do their best by him; they would follow the IEP, they would communicate honestly and openly with me about his behaviors, they would follow the suggestions of our medical team and behavioral team. They don’t “love him.”
You seem like an anxious, negative, generally angry person. I used to be the same. God’s peace has changed my life. I pray the same for you. (yes, my only child has autism.)
You got that from ONE blog post? Also, that bit about not judging others…where did I read that…oh, yes, The Bible.
I didn’t say i was perfect, far from it in fact. It probably was judgemental of me, but in all honesty, that is the vibe I’m getting from you here.
It’s cool to judge, so long as you’re honest about it. Thanks for clearing that up, and being a sterling example of exactly what I’m talking about.