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  #1  
December 28th, 2012, 01:49 PM
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Location: Kentucky
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Hey ladies,

Well I've waited on the post that I posted days ago to be approved and posted but it hasn't yet and I really need some support now more than ever. With pregnancy hormones raging, a hectic work schedule, financial woes, and just all around anxiousness, I found out some news that has really let me down emotionally and I don't know where to turn or what to think. This is will be really long so I'm sorry about that.. Here goes:

Well, I have had some minor concerns with my daughter Chloe since she was in her late 2's and even asked professionals and doctors (also her grandfather is a doctor) if she could be behind in some ways and they have all chalked things up to her age because she was meeting milestones, etc. and told me not to worry so I let it be.. she is now 3 and a half years old (will be 4 years old on April 30). Well, it turns out I took her to get evaluated because of some small concerns on December 18.. I took her out of her daycare to save some money while my boyfriend isn't working (his job is seasonal) and I am on the medical card and so finances are clearly not well right now.. the therapist did not finish the whole evaluation and gave me some things to fill out and some books and told me to come back to finish (because it's a lot of things and Chloe was interested in the toys by the time those came out and didn't want to take the exam haha).. it turns out the therapist suspects that Chloe is on the mild spectrum of Autism. I was so upset and scared and have pretty much been crying ever since. Like what are the next steps? I want her to be able to go to regular school and function and live normally as an adult (what every parent would pray for). I am so lost because Autism is not in my family or in my boyfriend's family at all that I know of and none of my 6 nieces and nephews have it.. the only thing my mom informed me of is my sister had ADHD and needed speech therapy when she was Chloe's age and I know my boyfriend and his sister had ADHD but that's literally all I know of so this makes absolutely no sense to me... Chloe has not been diagnosed and I don't know if I even want her diagnosed but I want what's best for her... but the therapist suspects autism and if so then mild and that with intense therapy she sees Chloe is coming through it.. Chloe talks, she points and names things, she communicates with me her wants, her needs, what she doesn't want to do or wants to do, is affectionate and loving, listens to direction and does what I tell her to (most of the time, like a couple of examples would be throws things away for me or if I tell her go get an outfit so we can go bye bye she will go and get pants, a shirt, socks, and shoes and bring them to me to put on her), wants to do things herself, will brush her hair, her teeth, etc., is social, knows her colors, numbers, letters, has a very large vocabulary and will point to things and name them, etc...the things that caused me to take her to get evaluated were things like: having tantrums here and there (although everyone even doctors told me this was an age-related thing), sometimes she answers questions normally and sometimes she uses echolalia so it's like different so I had not a clue if she was just learning or not?, and is VERY precise like she will pile toys or put them in order, and she does not play with toys like I see other kids playing with them typically. She will play with other kids sometimes but other times would rather be by herself playing... So those things caused me to take her in. I know every child is different but I know she must be on the spectrum especially if the therapist says it.. it just confuses me because of the fact that it's not in our families (to my knowledge or anyone else's) and several doctors have said nooo don't worry she will grow out of this it's her age blah blah blah late bloomer.. but no I know I need to act as soon as I can.. the trouble is I just learned this information on December 18 and she is 3.5 years old, will be 4 April 30... so what can I do now? I feel I caught it late and that makes me really sad I am also worried about the baby in my belly having this if Chloe is dealing with this. However, Chloe is the biggest joy to me and I would never trade her for anyone or anything in life I love that little girl more than anything! Sorry this is so long and I really appreciate you taking the time to read this and respond! I just couldn't wait any longer to see if my other post would pop up.. I hope you all are doing well xo
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  #2  
December 29th, 2012, 11:12 AM
navywifey2003's Avatar Home Birth Mama
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Bump! I have no advice but wanted to offer my support and hugs!
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  #3  
December 29th, 2012, 11:27 AM
phantomsgrl11's Avatar Mega Super Mommy
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First off you did not catch anything too late. Any "diagnosis" under the age of 2 is premature in my opinion so the age that you are looking at is actually the "prime time" to get things looked into. I highly suggest austimspeaks.org.

From what I read based on your opinions on her she does not sound truly "autistic" and does not really catch any of the red flags out doc always pointed out to look for along the milestone way. So she might be like you said on the spectrum but I honestly do not believe that she will not continue to lead a normal life.

One of my friends son is autistic and 12. He did not start speaking until THIS YEAR. The therapy he has finally gotten into has been amazing and he has come so far in such a short time. There are making amazing strides every day in the treatment of autism so do not feel like you are alone. I would recommend talking to her pediatrician to find more advice on where to go from here.
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  #4  
December 29th, 2012, 11:33 AM
Kalynas_Mom's Avatar Super Mommy
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Lots of hugs to you!!! it's a to hear i'm sure (I don't have a child with autism but I can only imagine how difficult it can be to process since we all worry and want the best for our children). My best friend has a son who will be 4 in May and he just got diagnosed with mild autism. They have also said with proper therapies they anticipate he will be off the spectrum at some point although they have warned her that any stressful events in his life could trigger symptoms to return at any point. It's been very difficult for her, although she's always known something was a bit off (for the record no one in her family has it either but that's not surprising since they still aren't sure what causes autism.)

I know the professionals and therapists my friend has been set up with have been really amazing. She'd had A LOT of doctors appointments to go to lately and there will be many more in the coming years but she's confident that all of it can only beneficial. I know she picked up quite a few books recommended by her developmental ped and the speech therapist and been doing alot of reading to help herself understand it better.

Sorry your going through this right now! :hugs:
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  #5  
December 29th, 2012, 11:40 AM
zkat's Avatar Mega Super Mommy
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Bourne is not on the spectrum but he has 2 cousins and goes to day home with a boy that is autistic (4 kids total). I also work with his mom.

1) what type of therapist was it? I would get the opinion of a BCBA and behavioral pediatrician.
2). She should have completed the eval. All kids react different in different situations and a partial eval is not enough to diagnose Autism.
3). Based on what you have described, your daughter may have some sensory/ social issues but not necessarily Autism. Kids on the spectrum have trouble making social connections and most have some issues communicating. It sounds like she can make those connections, but prefers to be alone. That in itself is not an autistic trait. Some people are just not social and that is OK.

I am no means a licensed therapist and you need to go with your gut.

My not on the spectrum nephew is a lot like her at that age. He had to have blocks and items sorted by color, he memorized all 100 matchbox cars and each had its own specific place. He could tell you immediately I'd one was touched. He is now 10 and no signs of autism. He is a very A type personality but normal.

My nephew on the spectrum was very different. He is extremely sensitive to clothes/textures. My SIL went through a million socks to find ones that didn't bother him. He was almost 5 before he was potty trained. Women wearing make up freaked him out. When things got loud and crazy, he withdrew away from everything. He doesn't usually reach out to people. I can ask him a question and if it is not worth his time, he will ignore you and look right past you. He has had a lot of therapy and is learning to cope but will probably struggle socially his whole life

The almost 5 yr old in daycare was totally non-verbal. He would have rages that were not normal tantrums. He would go to a room by himself and rage for 20-30 min. He doesn't like to make eye contact but will now after 3 yr of intensive therapy.

Sorry this turned into a novel but wanted to share with you all the different levels that I have seen for myself.

New strides are being made with Autism therapy everyday. The outlook is so much better than it was even 5 years ago. People are also more educated about it (there is still a long way to go) and there is so much more help now.

Keep fighting for her until your heart knows what is right. Big hugs.

Kat
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  #6  
December 29th, 2012, 12:36 PM
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Some kids really are just different and not autistic. I would have the eval finished. I worried about the same thing with my youngest, but the truth is, he was just hardheaded and lazy.

Why speak when he could whine? Why play with others when they aren't doing what he wants to do?

I read up on it a lot too when I was worried. A lot of the books said that one of the number one signs was a lack of personal interaction and showing affection.,

My kids a cuddle bug, but prefers to play alone.
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  #7  
December 29th, 2012, 02:55 PM
MamaSkunk's Avatar Mega Super Mommy
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My moms best friends DH has Asbergers and he is extremely intelligent and went to school and college etc. He is particular about certain things and gets nervous in big crowds. But he is highly functional.
My neighbor has two sons both with severe autism...one is 30 and still doesnt speak much. He just likes to ride his bike.
Theres a whole varying spectrum. Someone can have autism and be like everyone else except a bit antisocial and have a hard time relating to others.
It seems to me that IF your DD does have autism i dont think itd be the severe cases. She sounds like a smart kid!
Also my DH has OCD (Obsessive Compulsive Disorder) and hes a bit antisocial cuz of it....and as a child he acted similar to what your describing in your DD from all the things my MIL and FIL AND BIL said. So...it could not even be autism. My DH would rather be by himself...everything has its place and if its not put there he freaks. Everything always has to be in order! And my DH is also in the genius level of the IQ tests.
So sounds like she is very intelligent and normal. She will attend school and may even be ahead in some things. She may not even have autism...it could be something else. Even if she does have autism...it sounds very mild. I know the label of autism brings up alot of fear etc due to misunderstanding it. And those with mild to moderate levels of autism can still attend school and lead normal lives.
Dont stress too hard. Hugs mama!
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  #8  
December 29th, 2012, 03:20 PM
MarylandMama's Avatar Mega Super Mommy
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I started to PM you back, but then my computer died and it erased everything I had typed. When I saw this post, I thought I would post it here in case the info would be useful to anyone else. I have a lot of info bc I have been working with kids with autism for 10 years, mostly privately but also in the school system.

Who makes the diagnosis is important. Only a developmental pediatrician or clinical psychologist is qualified. I am a BCBA. BCBAs are not qualified to diagnose. BCBAs are qualified to evaluate skills and deficits, design a treatment program, and implement that program by administering ABA (Applied Behavior Analysis) the only treatment proven to work with individuals with autism. It has been validated in the research literature for decades and the science goes back to Skinner in the 1930s.

You should contact your local school system. They will have an early intervention program that should be able to help you. They should have someone qualified to diagnose to evaluate Chloe. Then, they will recommend services for her. There are some school systems that offer ABA and many offer in home services for kids in that age group. Depending on her needs, they may also recommend speech and/or occupational therapy. These services through the school system are paid for by taxes, so there will be no cost to you.

ABA services can be quite pricey and I know you said money is an issue. There are some instructional videos that can give you some tips. I will look up some good ones from reputable leaders in the field and get back to you with some recommendations. They will be expensive, but a lot cheaper than paying a BCBA and therapists to come to your home. Also, there may be free or cheap training workshops offered by your local chapter of the Autism Society or TACA (Talk About Curing Autism). These parent groups can be a great place to go for information and support. Someone there may also know about ABA groups that are non-profit and may be able to help you despite your financial situation. I know there is at least one such group in MD.

I want to encourage you that a diagnosis of autism in no way means that Chloe will not be able to enter school normally, graduate, or hold a job. Many high functioning individuals with autism have very full lives. One of the kids that I work with is 7, has never been in a special ed class, has always been mainstreamed, and is doing great. He is on grade level with his work and has a lot of friends. He is definitely different and needs work in some areas, specifically social skills, but I expect him to be just fine. The school has him on a plan to graduate high school with his peers and a regular diploma. He wants to be a pilot. We looked up the requirements and he has said he wants to go to college. And I believe he can.

I know this has to be hard, but don't be discouraged. I would push for the label because that is the only way to get access to the services. It can always be changed or removed if it is no longer appropriate. I have seen this happen. But you don't get the services without the diagnosis.

I hope this isn't starting drama (I really don't mean this in a combative way) but someone had mentioned premature diagnosis and I wanted to say that research indicates that earlier diagnosis is highly correlated with improved outcomes for kids. Early detection research has been able to produce stable diagnoses in kids even under one year. (These are highly trained researchers, not just any developmental pediatrician.) If there is anyone on the fence about whether or not a child may be behind, get an evaluation, as early as possible. I have worked with so many parents who suspected for a long time, listened to other people who said they were worried for nothing and the kid was too young, ended up with a later diagnosis, and missed valuable treatment time. I worked with a little girl diagnosed at 14 months. She is 4 now. She has made amazing gains, but still struggles in some ways and the diagnosis has remained stable over annual evaluation. As a mom, no one knows your kid like you do. If you're worried, go. There is no penalty if you go and nothing is wrong, but if something is and you don't go, you lose valuable time. BUT 3 and a half is definitely not too late, especially since it seems to be so mild. Just knuckle down and do what you can now. If there is any other way I can help, please let me know.

Chloe sounds like a great kid and with a mom like you who clearly wants to what is best for her, I think she has a ton of potential.
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  #9  
December 29th, 2012, 03:22 PM
MarylandMama's Avatar Mega Super Mommy
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Just typed a really long post with a lot of good info and now it says a moderator has to approve it. I will try to send it to you in a PM later. No links and no pics, so I'm not sure why it has to be approved...
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  #10  
December 30th, 2012, 12:43 AM
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One if the mods said if its a long unseperated paragraph it could trigger it, certain words ect.
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  #11  
December 30th, 2012, 05:16 AM
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Personally, i sounds more like a Type A /OCD personality rather than an ASD. I'd also ask that the diagnostic test be completed, and talk with the school system.
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  #12  
December 30th, 2012, 06:32 AM
rcjh12's Avatar Nicole
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Lots of ((hugs)). I don't have much experience, but we did go through a period when my oldest was about 4/5 where we had him observed at school because he was really struggling and were told he showed red flags of autism. We took him to therapy to have him observed even more and so on, and it ended up he was just a little behind in maturity ("late bloomer"). He's a smart kiddo, who still struggles a little socially, but did grow out of a lot of the early concerns. So while that isn't always the case, it does happen.

I think the biggest thing is that you need to be a strong advocate for your daughter. Ask any and all questions that come to you, and read as much as you can get your hands on. I have a friend whose son is autistic and she has thrown herself into getting as much information as she possibly can. I know that has helped her through, knowing as much as she can. Her little boy is a sweet, awesome little boy who just has his own way of doing certain things.

I am rambling so I just want to give some more ((hugs)).
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  #13  
December 30th, 2012, 07:10 AM
MarylandMama's Avatar Mega Super Mommy
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As I mentioned earlier, I sent a PM with a lot of info for Pamela, but just wanted share some general info on the subject. I am a BCBA and have been working with kids with autism for 10 years. If you have any concerns about your child's development, get your child evaluated by a developmental pediatrician. Pamela absolutely did the right thing in having her daughter evaluated. She has certainly not missed the boat on treatment, especially with her child having met all milestones. But if you suspect anything earlier, get an evaluation. The worst that can happen is nothing is wrong, but with autism, research shows that earlier diagnosis and treatment are highly correlated with improved outcomes. Stale diagnoses are being made in very young children thanks to extensive research in early detection. I worked with a girl diagnosed at 14 mos. She is now 4 and the diagnosis has remained stable, but she has improved so much and no one would ever guess how behind she was when we initiated treatment, Also, as groups like Autism Speaks agree, Applied Behavior Analysis is THE gold standard in autism treatment and the only treatment proven effective.

Just wanted to share the info since it is such an out-there issue and at the beginning, it is really hard to know where to go what to do next.
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  #14  
January 2nd, 2013, 07:51 PM
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First everyone, I just wanted to say I am sorry that I haven't responded. I've been working a lot and really just upset to be honest. However, I do want to thank every one of you immensely for being there for me, for responding, for giving me your input, and your advice. I really really appreciate it and I've taken everything in and am doing everything I can to figure out next steps for my daughter, first thing being waiting on the evaluator to call me back to finish her evaluation. I will keep everyone updated. Thank you again <3
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