It costs $1500 to go through the process of getting an official diagnosis for autism, and therapies range from $150-$3,000 a WEEK depending on how much therapy Bryant will need. Isn't that astounding? What is more crazy is that our insurance won't cover any of it. I feel like I'm so scared of what to do and how to pay for this if he needs a lot of therapy. I mean how does anyone begin to pay for this? She said a lot of people skip the official diagnosis and move right on to treatment, because treatment is the same either way, but I have no idea what to do. We are doing Early intervention through the State, but they only meet with him once or twice a month, which doesn't seem like nearly enough time.
I love my little boy so much, and am so afraid that people won't treat him like he is "normal" the second they learn about this. I want him to have friends! I want him to grow up and be able to get married, have kids, and a job. Hopefully with therapy and early intervention it will all be a reality.
Anyway, I have been torn on whether or not to post this, but figured it was probably time for friends to find out about what is going on. Hopefully the next time I post I will have everything figured out and be very optimistic about the future :)
19 comments:
there is the nicest, most open girl in our ward that has a son with autism.... her name is maeris, you should friend her on facebook, tell her you know me. she was just telling me about a school that was soooo much cheaper that she got her son into for therapy! my brother just had a baby 9 months ago, born with one of the rarest cromosone disorders in the world, it has some aspects that are the same as autism. but physically he will NEVER do alot...so its alot different too. all i can say is that my nephew has changed our lives for the better, and blessed us in ways we never knew posibble. heavenly father will point you in all the right driections. we will keep you and your cute bryant in our prayers!
I can only imagine what you're going through. No one wants to hear that their precious child is not perfect.
I have a bachelors degree in Speech-Language Pathology and teaching certificate for special education with a severe-profound endorsement. I have worked with kids who have autism and aspergers. Luckily aspergers is a higher functioning form of autism. Some kids with aspergers do get married and live relatively normal lives. There are actually companies out there who seek out and hire people with aspergers because of their often super ability to focus on minute details.
That being said, you have a hard road ahead of you. I'm not very familiar with the early intervention program, but even though he will not attend for a large amount of hours, they should spend some of that time teaching you what to do with him at home. Pay attention to what they do with him and ask a lot of questions. They may do some form of "play therapy" where it looks like they're just playing, but they have specific goals. You can ask them for ideas of what you can do with him to help him overcome his specific difficulties. You don't have to pay for expensive therapy, most people don't go that route. Once he turns 3, the school district will take over educational services.
You should also seek out some friends who have kids with similar problems--you need to be able to talk about it and share your frustrations with someone who knows what it's like. Also, never underestimate the power of prayer and scripture study to find a sense of peace.
I sympathize with you. That would be tough news. But, the good news is that now, more than ever, there are incredible resouces for autism/aspbergers. Online support groups, awareness has really peaked in the last few years... I just recently purchased Jenny Mccarthy's biography about her son with autism (clearnace rack at barnes and noble) I can't wait to read it. I work for a therapist named Amy Cluff. She's the best child therapist in St. George and has tons of experience in this area. Her fee is $95 a session. Typically she sees her autism clients once a week in the begining. I'm sure she'd be willing to talk to you over the phone. She also does skype sessions. Or I could ask her for a refferal for someone in your area! Good luck. Although overwhelming at first, you guys will figure out what's best for your family. Also, you've found out early, which is a great benefit.
holy smokes. I am so sorry about all of this. I seriously can not even imagine how it would feel to hear news like this and know what to do next. However, he WILL have friends. He WILL live the life he is supposed to and bless SO many people around him. Heavenly Father is watching over you guys and loves you. Lean on him when you feel down. He will lift you up. I worked in a pre-school for a year and every kid in my two classes had forms of Autism and I absolutely fell in love with every one. I will never forget their faces, smiles, frowns, and good times. They have forever changed me and I know Bryant will have that effect on people with or with out this "diagnosis".
Bec, you are amazing.
My heart aches for you and your family. I'm sure this can't be easy, and that there will be a lot of bittersweet in the things to come. But- the first thing that comes to mind is that I'm sure you are the perfect mom for Bryant. You are in a position to be the ideal "patient advocate" for him- as cheesy as that sounds. I agree with other commenters- catching it early and getting started with early intervention programs is a really good thing. In certain cases, early intervention with years of therapy can help kids with autism lead a normal life. I have a cousin who is an example of this. It's hard to see what the future looks like, but with parents who love him so much, and are willing to advocate for him, he has good chances. I suggest joining a support group- I have heard there is an excellent LDS Autism Yahoo Group- to talk to people who are in your situation and can empathize. Anyway, I will definitely be sending some prayers your way. <3
Proverbs 3:5-6
Love you guys
xoxoxo
Hey Becca,
My cousin has autism and I know that its really hard in the beginning, but it does get better. At first it was really hard for my aunt to try and learn the best ways to handle the anxiety and breakdowns but once she did and once her son learned how to handle them as well he started doing really great! Bryant is such a cutie and I know he'll do great with his treatments.
Two of my sister-in-laws do therapy with kids, if you'd like I can ask them about it for you and see if they know any good places in Utah for therapy (they both got their degrees here so I'm sure they'll know some). Just let me know. Our thoughts and prayers are with you guys.
Becca,
I love you. Come visit me in St. George with Bryant and Travis. We will play so you can take a break from stress!
Becca,
You'll be in my prayers that you can find the best path for Bryant and that you will find comfort. I can only imagine the fear, stress, heartbreak and worry you are going through. People are right... more therapies are available for autistic children right now, but I doubt that is providing much comfort to you at the time :).
You're a great mom!
Hi Becca, this is Cora. I'm from Ecuador, I met your husband while he was on his mission there, and I've been following your blog for a long time now. I love all the cute and funny things you say on you posts. I never wanted to write you a comment cause i didn't want you to think I'm crazy for writing you and you don't even know me, but I just read your last post and I felt like doing it now. I work at Head Start, (a Government preschool) and just a couple of months ago I met JD, this cute little boy has autism and even though I need a lot of energy to play whit him, he is seriously one of the kids everybody love the most. He is super funny, smart, sweet, and he is always full of energy and love. All the kids love them. He has so many friends and everybody treat him the same as the other kids.
His parents can't afford the treatment so they have been just praying a lot. They are absolutely proud of their boy.
I bet it's hard for you now that you just found this out, but just pray a lot and like JD's mom says every time somebody ask what can they do for JD: Just treat him like a normal kid.
You have such a beautiful family, I'll keep you in my prayers and if that's ok I'll keep following your blog:) Love, Cora.
Hi becca. I'm debbie's sister, Seana. I'm a sleek therapist and I work primarily with children on the spectrum. Please give me a call when you can and I can share with you what I know about medical coverage, services, intervention, etc. Hope I can help!
Also, know that many people with Aspergers go on to have careers and lives. If you had to be on the spectrum, that's where you'd want to be.
That should read "speech" therapist. Sorry, typing on my phone:-). But I am pretty sleek as well.
I'm glad you chose to post on this. I can't pretend to imagine how you and Travis must feel.
Lincoln is about to go through some screening due to his loss of speech and delay of speech and i have been so frustrated, sad and bitter the past few days as we've been around other kids his age who are saying so many words. And then I feel so guilty for comparing him to others and feel guilty for being frustrated. Anyway, it's not at all close to your situation, but I appreciate your braveness in sharing your situation and struggles and I really hope you're able to find the answers and help you're looking for. Hang in there.
Oh, Becca, I'm so sorry to hear this. (Bet you didn't even know I read your blog!) I won't pretend to even begin to understand how you are feeling right now. But I do understand what it's like to have a kid that's not "normal." (Type I diabetes in our case.) And I know the feeling of devastation and mourning for the life they won't have. I think that's still the hardest part for me--thinking about how he was "robbed" in some way. But I truly believe that these amazing kids knew beforehand the types of struggles that they were going to have. And I really believe that we are the right parents for them. You are the mom that Bryant needs--he knows this and you know this. My heart just aches for you and for Travis. But, wow is Bryant a lucky guy to have you!
I'm so freaking lucky to call you my friend. I love you and am a phone call and/or text away whenever you need me. Hang in there! And if you need an escape, mi Casa es su Casa. Hope you know that. Hug.
Hi Becca! We have been battling Dieter's allergies since he was 5 months old. As a result, I have been reading as many books as I can get my hands on to try to heal his body. I recently purchased a book called Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. Her first page in the book is a letter to parents with Autistic children. She writes, "Most parents of autistic children can clearly recall that traumatic moment when the diagnosis of "Autism" was announced to them by a doctor, followed by the statement "There is nothing that can be done". Well, being a doctor myself, I have to say that your doctor is wrong, there is a lot that can be done! I would even go further, depending on your commitment and certain circumstances, you have a good chance of bringing your child as close as possible to normality!" She goes on to say, "The sooner the treatment starts, the better the results, because the younger the child is, the less damage there is to undo and also because they have less catching up to do in their development with normal children of their age."
I am not yet finished with her book, but she has given me much hope to heal Dieter's body and she talks over and over of healing children with Autism. I thought I would let you know as I am sure you have begun reading everything you can get your hands on to find some answers. I purchased the book at www.nutrivene.com. I hope you can find some guidance and light from this book.
Becca, I'm just now catching up on my blog reading and I just wanted to let you know I've been thinking about you/praying for you. How lucky Bryant is to have such an awesome mom, and if you ever need anything let me know.
Becca,
Sorry I am not some creeper or anything but I heard you guys were going through a really hard time right now and I wanted to give you some words of encouragement. BTW my husband went to school with you and your twin.. anyways A lady in my ward has 2 daughters and if I remember right they both are are Autistic but, she has helped them to overcome it and honestly by talking to them you would never ever know that they were. She has found lots of natural ways to help and whatnot and they are extremely smart girls! Also a family in my in laws ward in Hooper has a son who has Aspergers and she has done everything herself for him and has even wrote a book on his life... he is serving a full time mission now... anyways my name is Natalie Green (Clayton Green is my husband) and you are more than welcome to message me if you want and I can get you into contact with these women if you would like. nataliegreen20@gmail.com
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