I don’t know much about autism, but I know several parents whose children are affected. Their daily struggles still seemed kind of foreign to me, but then I read Holly Robinson Peete’s article, 8 Facts About Autism the Media is Not Covering. In it, she discusses, quite frankly, how treatment for autism can be expensive, how it can test marriages, and make siblings feel left out. After reading it, I felt I had a better understanding of how difficult and misunderstood autism can be.
I know several readers who have children with special needs, so this may come as no surprise to you. But I was stunned with my ignorance on the subject. Why didn’t I know more about this?
So when Dina (who always offers the best giveaways when it comes to books worth reading) contacted me about a giveaway of My Brother Charlie, written by (who else?) Holly Robinson Peete, I jumped at the chance to offer my readers a giveaway.
The book (co-authored by Holly’s daughter, Ryan – how cute is THAT?) looks at the issue of autism from the sibling’s perspective. I won’t give too much of the plot away, but it’s a beautiful story.
So what’s the giveaway?
ONE winner will receive an autographed copy of My Brother Charlie, with TWO additional winners winning a copy of the book as well. {I’d LOVE that autographed copy – you guys are so lucky!} So that’s three chances to win – are you ready?
To enter, leave me a comment saying how autism has touched your life or why you’d like to learn more about the condition. I will announce the winners next Wednesday. Contest ends Tuesday, April 20 at midnight. Good luck!
I just finished reading Holly’s article that you linked in the post and it left me in tears! All to often we are not aware of, or have no desire to learn about things that do not directly affect us. While I have no personal experience with autism, I have a child that has some medical issues and I know all too well how a child can go from seemingly healthy to having a problem.
This book seems like it will be something special and makes me want to know more about the condition. In her article she talked about how play dates and the like can be ruined because of it. I would like for my children to be exposed to children who are different from them, weather it be race, gender, special needs, or whatever. This book seems like it could give insight to little people in a way that they could understand….and I think it’s SUPER CUTE that it’s co-written by her daughter as well, what a way to show sibling love
I hadn’t heard about that book before, I’d love to read it. You know all the problems I had during my pregnancy and that my son was a micropreemie, but I don’t know if I’ve told you all about his special needs or not. He is autistic, has sensory processing disorder, and global developmental delays. We didn’t discover all this one one day, either…its been a constant quest of many doctors, therapists, developmental teams…its something that no one can understand unless you go through it yoruself. You really can’t. And you know, it still makes me angry about the doctor that diagnosed his autism…he spent about 15 minutes with my son watching him play and asking me questions, and then he just said “he’s autistic”. Just like that. And he gave me a binder of information, suggested an experimental drug, and sent me on my way to a lab so they could do all kinds of blood and urine tests on my son. It was a terrible day. I don’t know that I will ever have another child…It wouldn’t be fair to either of them, and I don’t even know if my body can carry a pregnancy to term. So I most likely will never have any more children…which is really sad to me, because I’ve always wanted several children.
@Katie – I believe you have told me about your son’s special needs before, but not of how you found out he was autistic. Wow, that doctor just seems all kinds of wrong. You were there by yourself? **Here’s some hugs for you** I think it is great how autism is getting more attention now and people like me, who might have been clueless, are now being informed on how life with an autistic child can be. You always seem like a wonderful and caring mom. Your son is so lucky to have you in his life and vice versa.
I’ve heard so much recently about the Peete’s son – I never knew they had a child with autism!
I personally don’t have an experience with autism, but I have several friends and family members who are special education teachers and work with children with autism on a daily basis! They are the most selfless people I know; working tirelessly to ensure that, despite their differences from *normal* children, they still get the education they need! They work with other teachers and administrators that just don’t get it, and see the children as nuisances that need to be medicated – as opposed to my friends who see them as little ones who want to be understood but need someone to be patient with them!
My friends (twin sisters) and my cousin are also moms themselves – so they are often worn thin from work by the time they get home and are faced with the normal trials of being a mommy. However their passion for these children keep them motivated to keep at it, rejoicing at every new development and milestone! These ladies inspire me to be a better mom everyday, and I love the energy they give to working with children with autism.
Aww, thanks Tara!
You always have such kind words for me. Yes, I was there by myself with my son. And thats just how it went…definitely not an experience I care to repeat. The experimental drug that this doctor gave me (the doctor was a neurologist) is called Namenda – its an alzheimer’s drug. I didn’t know what it was when he gave me the sample pack, so I took it home with me and researched and talked with my son’s therapists and other doctors about it. I did not want to give him that drug, and I didn’t. I just was shocked that this neurologist just told me my only child has autism like it was no big deal and gave me a drug meant for people 50+ years older than my son that was “experimental”. What the hell does experimental mean, anyway? I’d really prefer it if he didn’t use my son as a guinea pig, you know? So at our follow up appointment a month later, he asked if I was giving my son the medication, and I flat out said “no”. He gave me this disapproving look but didn’t say anything about it. We haven’t been back to see him again.
And the really confusing thing is (if all of this isn’t bad enough) none of the doctors and therapists my son has can agree on the fact that my son either has autism or doesn’t have it. We’re just all kinds of screwed here. His therapists don’t think he’s autistic. His psychologist says he has autistic tendencies. His developmental pediatrician says he has “autistic tendencies but has glimpses of social reciprocity that would seem to rule out autism at this time; we would like to evaluate him again”. The other developmental pediatrician and his team of therapists say my son say he isn’t “truly” autistic because he is more social, but they were not going to “take away” his diagnosis of autism because he can benefit from autistic therapies. And his regular pediatrician doesn’t really tell me her opinions anymore, because he has such an arsenal of specialists fighting over him and his diagnoses. And this is only one of the many issues my son is dealing with.
So yeah…welcome to the world of special needs…doesn’t it sound just great?
I have a close friend who adopted the most adorable little boy. She’s a single mommy and just found out that he’s autistic. Not having all the resources to get him all the necessary therapies is not stopping her. She has taken control of his healthcare and has changed his diet and gotten a great team around him to support him. I admire her and her dedication to his well-being. As a single mom myself, I can’t imagine her struggles and just pray that the research on autism will catch up and provide some solutions soon.
My heart is with all the mommies of special needs children. I have no experience with autism, but I do have a daughter who is a survivor of a catstrophic stroke. Holly Robinson Peete is spot on when she says that therapies are prohibitively expensive, and you stay up at night wondering if the therapy you had to say no to is the one that would have made the difference to your baby. I hope that research can find a cause and cure for this scourge.
@Katie – I know the horror of insensitive doctors, neurologists apparently do not need to take the bedside manner class (“I doubt she will be able to walk or talk”). On a different note, even with my daughters’ many issues (stroke and a serious heart condition), we did have another child and she is perfectly healthy and just what we needed.
@Cheryl – My heart is with you and yoru family. I’m so sad to hear your daughter suffered a catastrophic stroke, but I’m very happy to know she is a survivor. I hope she continues to progress and grow and learn and do wonderfully. Thank you for telling me about both of your children
I know what you mean about doctors who need special bedside manner training…right after my son was born (he was a micropreemie born at 24 weeks) he was taken away from me and a team from another hospital was trying to save him. A neonatologist, transport nurse, respiratory therapist…I don’t know who else was there. But they took my baby before I could even look at him. They worked on him for over an hour in another room, and finally the neonatologist came to my bedside and started telling me all kinds of things, from my son could very possibly be disabled all his life, have cerebal palsy, be deaf and/or blind, the list went on and on. All before I was even allowed to see my baby for the first time. So I know exactly what you mean about poor bedside manner…the doctor was so distant and unattached like he was talking about the weather.
@Katie – Ahh, the birth story! I remember it well. My daughter was full term but has a serious heart condition. She was shuffled away so fast I did not see her either. In fact, I threw an actual, honest to God, hissy fit 3 HOURS later to see her. Then proceeded to cry hysterically in the NICU because I did not know which baby was mine. The takeaway lesson from all of these experience is that experts are not experts, they have just seen more than us. My daughter both walks and talks, takes ballet and loves books. I wish these doctors would understand that our children are not a “case”, they are people, real, feeling people, who deserve respect and compassion. I am not saying they need to cry with me over the diagnosis, but at least not act like the news in nothing.
@Cheryl – Finally someone who honestly, truly understands what its like to be in a situation like that! I feel so close to you, even though we’ve never met, because of the similar circumstances. I didn’t throw a fit like you, I was more crying and pleading…finally they wheeled my baby in my room, let me see him for a few minutes and touch his tiny hand before he was transported to a different hospital. I was not allowed to go with. Did anyone escort you into the NICU the first time? You know, to show you around, show you your baby’s area? Because I’d break down crying if I didn’t know where my baby was, too. I remember vividly once my son had been moved to a different area of the NICU. I wasn’t informed, he had been there about 2 1/2 months and I walked in one morning and went to his bedside to discover that there was NO BABY in the bed. The room started to spin, things got fuzzy, I don’t think I was breathing…then a nurse ran over to me and told me that he had just been moved, calmed me down and walked me over to his new area. I almost had a full out panic attack. It was one of my worst nightmares…my baby not being there…I can’t tell you how many nightmares I had previously had of my son just disappearing from the NICU or dying, and that reality was close enough to send me into a near panic attack. It was terrible.
I agree, I wish doctors would’nt be so objective and distant like that. I make sure to keep in close contact with the whole NICU and make sure they all know the wonderful improvements and advancements my son has made. I want him to be their poster child, so to speak, that he was not doomed from the start. He’s a wonderful little boy who walks around, has a handful of words he can use, and who just learned how to tell me he loves me. I want them to be aware that he grows and learns more every day, and he passed their standards and expectations long ago. I’m so glad you’re daughter has defied the odds as well. I’m sure you’re incredibly proud of her and love her very much.
I have so many friends with autistic children. It baffles me how drastically the numbers of children affected are increasing! I want to learn more about autism which is why I want to read this book.
Thank you!
I would love to win this book, it would be a great and important addition to our school library. We have many special needs kids, and this book would be a big help.
Thanks
So I know this contest is over but I feel like I should add my input. I have to small children Ukiah my oldest was recently diagnosed with Bipolar. This was a shock since it added to the ADHD, anger management, and behavior problems that he already has. Then yesterday at the boys check up the doctor comes in and states that he feels that my youngest has Autism. What a shock. I started to cry. All I could think was how am I going to manage this. I am a single mother of two special little boys. Both are going to need alot of attention. How am I going to be able to give both of them the attention that they need. At the least our family doctor was not much help other than telling me his opinion. All I got out of them was a referral to a specialist.
I have to take Ukiah to see 4 different doctors every month. And now I have do the same with Trace.
So I guess this is where my journey starts. I know that I will make is because they give me strength. I am so lucky that I have their love because without it I am not sure how I would make it through.
@Jessica – I know you are early into this journey, but have you found any support groups for moms with special needs children? I think it will help to be part of a group where most of the moms know exactly where you are coming from and can give you tips on how to balance your time and schedule and still have enough energy to take time out for yourself. I know my e-mail on here, so please contact me and let me know how I can help!