Last night my friend contacted me to share that her niece’s daughter was just diagnosed with Autism.
On Wednesday, August 8, 2012, a beautiful little girl, who turned two in May, was included in our fold and her mother, who is due to deliver a second daughter in December, is scared and confused.
And this is my request…
Let’s rally around this mom.
Let’s let her know she is not alone.
Let’s let her know she is now part of a diverse, and positive community brought together by autism and who, despite our many challenges, energetically work together to support and comfort our members.
Although it has been almost 17 years since I was where this mom is, I remember almost every detail, every emotion, I felt the day my son was diagnosed with Aspergers. You remember the day too and so will she. So let’s make part of her memory include an overwhelming flow of support from those who know and understand totally and completely that place she is now in.
Could you please, through comments to this post, share your thoughts to this mom?
Could you please include links to your blog and the websites you go to for information and support?
My thought was to send her this link so she can hear our voices. So she can feel our arms wrap around her. So she can know, she can actually SEE, the support that is available to her. So she will know optimism and love at this difficult time.
If you have any other thoughts about how we can support her, please share those too.
Our community has a new family. Let’s be there to receive them with outstretched, welcoming arms!
Thank you.
Gratefully,
Charlotte
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Dearest Newest member to the tribe,
Welcome!
I know it all probably seems overwhelming right now and if you are like I was, the last thing you want is advice. So I’m not going to give you any. What I am going to say is this ((((((new mom))))))) The parentheses around your name means hugging, the more parentheses the bigger the hug. My Autistic friend, Ib explained that to me a couple of months ago.
Autism is not a death sentence. I wish someone had told me that right away. It isn’t. You may be one of those moms that already knows that, or senses it. I wasn’t.
Whatever you’re feeling is okay. There are so many of us now and as Charlotte will verify, we are here in strength and in numbers to support each other. It’s going to be okay. It really is, even if it doesn’t feel as though that could be possible, it is.
I have a blog: http://emmashopebook.com
And here’s my email, should you want to reach out: Emmashopeblog@gmail.com
Reading blogs wasn’t really an option when my daughter was diagnosed some eight years ago, when she was two, there just weren’t that many of them and what ones there were, I wasn’t aware of them. But now there are hundreds and hundreds of them written by moms, written by dads and my particular favorites are the ones written by Autistics. Those are the ones that give me the most hope. If you go to my blog or Charlotte’s here or anyone else’s, most of us have a blog roll on our sidebar. Shop around, find the ones that resonate, leave comments if you feel the urge, some people will reply, some won’t. But you will see very quickly, you aren’t alone.
Ask for what you need. And if you just want to rant and have someone listen there are many of us who can do that too. I’m raising my hand and waving it in the air.*
Just remember, despite what all the professionals tell you, assume competence. Look for her assets. There are so many. Sadly our world still views autism through a deficit lens. This is unfortunate and it doesn’t help our children to be seen that way. Autism is a difference in neurology. Pure and simple. It isn’t bad, good or anything else, it’s just different. Your daughter may have gut issues or sensory issues or any number of other things that make this world of ours confusing.
I said I wasn’t going to give you advice and now it seems I am. So I’ll stop. Please know that there is a massive group of us, supporting you and your daughter, cheering you on. We are here if you want to reach out, ready to listen if you want to talk.
You are not alone.
Don’t ever forget that.
Hi, little mama. I know you don’t know me. But I know you. I know you’re scared. I know you are wondering what is going to happen to your child. I know you’re wondering what to do next. You’ve taken the first step in coming here. You are seeking information. Keep it up because you will always be soaking up information. You’ll need it all. My blog is http://fairytaleforgotten.blogspot.com. On the right hand side you will find a list of blogs that follow. Go through them. You will find some amazing people there. I have my email on my website & if you want to ask questions or just talk, email me.
I can also send you a more specific autism sheet with all the blogs I follow that are strictly autism related.
Also google the Autism Positivity Blog.
You will find tons of wonderful blogs through it as well. I wish you all the love & hope & strength you will ever need to get through this. ((HUGS))
My name is Lori and I am an adult with autism. My father and I were both diagnosed after my son was diagnosed.
Nothing hurt or frightened me more than the therapists who pitied us, who shook their heads because my son did not make his expected milestones.
What a blessing to hear from those who celebrated differences. Every child deserves unconditional love and respect.
Autistic individuals perceive the world differently and consequently act differently. This deviation from the expected creates confusion and fear.
Don’t let anyone frighten you. Instead, strive to understand autism.
Read books. Follow science. Connect yourself to autistic individuals as well as parents of children with autism.
My blog is here:
http://aquietweek.com/
If you scroll down to the left my blog, my blogroll will take you to delightful blogs written by indivduals with wisdom and bountiful advice.
On Facebook look up Karla’s ASD Page. Karla is an autistic adult who creates wonderful infographics to educate others on autism:
http://www.facebook.com/pages/Karlas-ASD-Page/155369821204141?ref=ts&sk=photos
Her slides reflect my personal experiences very closely.
One more FB resource:
The Autism Discussion Page:
http://www.facebook.com/ldegtiarev#!/autismdiscussionpage
Bill Nason gives wonderful information and advice.
You can message me on my FB page “A Quiet Week in the House” (I’m too parnoid to give out my email here!). I’ll glady swap more info. I would be honored if I could help you in anyway.
Lori D
I too am more than happy to talk, listen, be a sounding board for anyone who needs it. outrunningthestorm at gmail.com. The blogosphere is so full it’s such a matter of personal preference who I would refer someone to but for starters I usually just say diary of a mom and Thinking persons guide to autism. Also, there are some realy great facebook communities out there where parents gather and talk, vent, ask for help. I’m not a big Fb person so I’d have to ask around for which ones are the best these days.
Best of luck and welcome, we are, so many of us, here for you, please always reach out….
Welcome to our world
I’m not a mom but a 28 year old woman with autism, as a child my problems were very severe but now you’d never know I was autistic – I have a wonderful partner who is also autistic and an expert in his field. The point here being not to worry about your child failing or not having a ‘normal’ life, even with severe autism (some would call this ‘low-functioning’ but as you may find many find this term offensive or at best inaccurate) your child can grow-up to have a happy, healthy, successful life. Just remember autism is different, not broken.
Our community is complex, pro-cure/anti-cure and with our share of supremacists, it’s a good idea to inform yourself as much as possible – don’t worry, you’re not expected to learn it all over night. The MOST IMPORTANT thing you can do as a parent of an autistic child is to listen to autistic adults – we are not the enemy, even if we seem higher functioning we may well have faced the same problems as your child or at least have a good understanding of them, we’ve been through it and we know what is needed to help other autistic people succeed in life.
Thank you for stopping by and sharing your personal experiences with autism. Your comments were important, so very relevant and hopefully, helpful to all moms in need. I wanted to send you a link to today’s post because it is important to me that you know just how much I appreciated your gesture… http://wp.me/p1PxcV-1LP
Thanks again!
Charlotte
I came across this blog entry from a Facebook post and wanted to comment even though I’m not a regular reader of this blog, so I’m sorry if I’m intruding.
My son was finally diagnosed with autism at 3 years old after more than 18 months of testing, OT, PT, and speech therapy. My baby who had never even been to a babysitter was pulled from his preschool classroom and put into full-day, full-year program specifically for children on the spectrum. I was devastated. I remember seeing his new classroom with the dimmed lights and quiet atmosphere and feeling devastated. I went to bed for a week.
Over the next few years, I met some of the most dedicated professionals and educators who loved my son, celebrated who he was, and cared more than I could have imagined. We have been lucky because with only some exception, my son has been accepted, loved, and encouraged for who he is. Yes, he has challenges living in an NT world, but he still manages to thrive despite that.
I would not want my son to be any different than he is. He is a truly exceptional child even when it’s not reflected on a report card or by milestones meant for NT children. Teachers he had 4 years ago still check in on him. Everyone I meet who works with my son call him things like “charming”, “full of personality”, “funny”, and “creative.” Yes, an autistic person can be all of those things no matter what the stereotypes are. He has friends, family, and a world full of people who love him not despite the autism but because of who he is.
And maybe that’s the main point that I’ve learned in the last 4+ years– that having people who love him for exactly who he is has been the most important thing in the world for him and for our family. We have never tried to make him into an NT child. I have never accepted my child as a list of “disabilities.”. His mind and the way he thinks are fascinating.
In some ways, he’s actually easier than an NT child. Challenges my friends have with their “normal” children I don’t have to deal with. He’s not mouthy or sassy or extremely manipulative. He’s very straightforward about everything. He doesn’t drag me to those horrible sensory overload places like Chuck E. Cheez.
I guess I just want to express to this new mom that as devastating as the diagnosis may be right now, it’s not going to feel that way forever. Eventually you will know again what you knew before you got a diagnosis– that you have a beautiful, wonderful child. There is no concrete path your child will take over her lifespan. In some ways, it’s liberating to throw away all your expectations for your child and just let him or her be exactly who he or she is.
My son has taught me so much. It’s okay to be scared, unsure, and even grieve for awhile. But realize that it will not always feel this way, and that you and your family are not alone.
Thank you Susan for stopping by and sharing such thoughtfulness. You were not intruding at all but rather were a welcomed guest! I wanted to send you a link to today’s post because it is important to me that you know just how much I appreciated your gesture… http://wp.me/p1PxcV-1LP
Thanks again!
Charlotte
I know that, like the mom we are reaching out to, I was scared, angry and depressed when my son was diagnosed back in February. Over the past few months, I’ve been reading and connecting to other bloggers and have learned a valuable lesson. The diagnosis didn’t tell me what was wrong with my child. It let me know that he is different. He doesn’t need to change-I do. I have to throw out all those “what to expect” notions and learn to look at the world through his eyes. And while I may get frustrated at times, I imagine my son is even more frustrated than I am. That’s what I try to keep in mind.
I’ve been lucky so far that I’ve found only support as I blog about my experiences. I hope that you are also blessed to be surrounded by people that will offer you and your child support.
I have a four year old son with autism, and I am currently 7 months pregnant with my second son. I remember when my older son was first diagnosed, I did go through a real grieving process, and part of the reason I decided to finally pursue my MS in Health Psychology was directly related to his diagnosis. I went through some agonizing moments, trying various diets. At one point I had a mother of a neurotypical child tell me that my son would be better off in a group home or in care away from me if I am not willing to put him through 8 hours a day of therapy. I went with my gut, in every instance, even though I second guessed myself, because of my nature I have no other option but to go with what feels right (otherwise, my anxiety level would be much too high).
Now I will admit that upon falling pregnant this second time, I worried for a while about having a second autistic child. But my son is the best teacher that I have ever had. He has shown me in so many ways that autism can truly be a gift, even though there are other issues that can be difficult and frustrating to go along with the gifts.
No matter what happens, everything will be OK. I just want you to know this.
Hi there, I am the mother to a 4 year old son with autism, and am 7 months pregnant with another boy. I remember when my son was first diagnosed, I went through a real grieving period, but mainly because I also have sensory/ASD issues and I grieved because I had passed on what I viewed (at the time) as a disability. I have always struggled with social situations, and to see my son in the same boat just broke my heart. His father also has ADHD and sensory processing issues.
Karla’s ASD page on facebook, as well as my own research, and the sharing that comes from reaching out to other mothers (in my awkward way, which is surprisingly and gently accepted by moms of ASD kids in a way I have never before experienced). It’s a growth process, like everything. Now I feel like my son is the very best teacher I could have. He is more openly loving and outgoing than I ever was, and has strenghts that we are learning to build on. I can recognize that autism is a gift, in some respects, and a challenge in others.
I can only say, trust your gut above all else. You will get advice, but know that what works for some might be devestating to others. You are the expert on your child. I also had a degree of fear and stress about having another child with autism. I have my own breakdowns, my son has his breakdowns, his dad has his breakdowns…but you know what? No matter what happens, and I really mean this – everything will be OK.
Oh, my heart goes out to you. Know that you will find the answers you need and grow from this experience in strength and courage like you never imagined. The road does get easier, but allow yourself to grieve and be frustrated, and to feel all those emotions that are “normal.” You can click on my photo to get to my blog about females with aspergers. I have a 13 year old with ASD. Much love and support to you. Sam
I am so sorry for your pain. I can honestly say I know just where you are. I was pregnant with my third child when my firstborn was diagnosed. It was overwhelming to say the least. My daughter was born just two short months later with hearing loss, and we later discoverd a host of other disabilities. It has been just three years since my son was diagnosed, and last summer, both of his sisters were as well. If someone had told me when I was younger that I would have three autistic children, I think I would have freaked. But now that I am here, living it, day by day, it’s really not that bad. On the contrary, it’s quite amazing. I am learning so much more about what love is, and what support is than I ever thought possible. I am learning so much more about myself and my husband. And I am learning to never take anything for granted. It is hard. I won’t sugar coat it, but the rewards are so much bigger and brighter, especially when you can see them so clearly because you had to work so hard for each of them. You can do this. And we will all be here for you.
Erin
threepuzzlepieces.wordpress.com
PS – you might like this. <3
Erma Bombeck, "The Special Mother."
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint…give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect – she has just enough selfishness." The angel gasps – "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
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Having a child with Autism or Aspergers is scary. I am 27 and I have Aspergers. For most of my life I have lived in denial of it, even though I was diagnosed at birth. I am not going to say that it is easy for you or your child, what I will say is that I have had an incredible life and would not change anything if I could. I am not going to pretend to know anything about parenting or to be able to give you advice. The most important thing is love. My mother didn’t treat me any differently than my siblings who are NT and I grew up just fine.
Check out my blog if you like http://mrasperger.wordpress.com and this one in particular http://mrasperger.wordpress.com/2012/10/17/aspergers-on-the-million-dollar-question/.