feeling like i'm on an emotional roller coaster and have no idea where to start....

Rebecca - posted on 08/27/2010

First off i do not believe you are crazy at all. From what u say about her symptoms she sounds classically autistic. you are her mom and your instincts about your kids are valid. early intervention is key you are very right about that. unfortunately u will probably face alot of obstacles in the form of people who think they know better. they don't you and your husband knwo your daughter. you see her everyday so you see things doctors and others wont see. So my heart goes out to you. I have one child with autism and one with aspergers. It is a hard life but very rewarding. My daughter is 16 and my son is 12. Fight hard for early intervention. Even if it was a misdiagnosis it won't hurt her. But it is not in her best interest to delay. I only wish i had known what i know now when my daughter was young. i will always wonder if she would be better if i had gotten the help sooner. but i did what i could. I will be praying for you. Stay strong and God Bless you.

Anita - posted on 08/25/2010

don't beat yourself up.i was talked out of getting my two yrs checked out when they were 2 and 3 yrs old when my youngest turned 4 and pre school couldn't deal with him as he was hitting them and telling them no all the time and running away it be came a issue but what really did it for me was that my son had terrible trantrums scream for hours and destroy his room one day he broke his favourite toy in a rage and when he had calmed down he asked me way i had broken his toy with tears in his eyes, he wouldn't have it that he broke it and went on screaming for two hrs... he ten said to me mummy help me whats wrong with me..that day i decided to hell with the family and go get him the help, he was dx with adhd,odd,cd and then about 6 mths ago aspergers he is going to be 9 in march.. i still have my doubts specially with certain people in the family saying that a good smack and showing him who the boss is , is what he needs i don't let him walk all over me but i also don't want himto be scared of me too.. cause that is the only reason he behaves for them..hey my kids have been tested and i have also had a second opinion but still they think there is nothing wrong but i know the treatment is working so i don't care it does hurt me some times and i get sick of having to justify myself and what i am doing but i am learning that when it comes to the crunch their father and i are the only ones that are going to fight for them

Tracy - posted on 08/24/2010

Early diagnosis is the best thing for your child. Waiting would only delay getting your child help. You did the right thing. Everyone told me I was crazy too. My mom, my doctor, my ex husband. My daughter did not get her diagnosis until she was 5 and when I think about all the time that was wasted because I just knew there was something off with her, I want to scream. The bad news is that the roller coaster has no end in sight, good days and bad days will go on and on but the good news is that now that you know you can help. I can not help you as far as the insurance stuff. I am in Canada so did not have to pay for the diagnosis but up here my daughter does not qualify for any funded therapy because she is high functioning and only the moderate/severe cases qualify and then there is a huge waiting list. I still have issues with my mom because I feel she is too hard on my daughter about certain behaviors that I feel are autism related and my mom sees it as just bad behavior. My pediatrician suggested I bring my mom in to see her and let her explain things so it may help to bring mom along on some doctors appointments. I constantly give my mom reading material that I feel applies to my daughter, sometimes when they can see or hear about another child's behavior or issues that are exactly like my Megan's it can somehow just click for others that she just can not help herself when it comes to certain things.

Sara - posted on 08/24/2010

OMGosh Nicole, I'm SO sorry you're not getting any support and I understand completely. My 12 yr. old son has ADHD and PDD-NOS and has had those diagnoses since about 5 yrs old and to this day I get very little real support from those closest to us. See if your state offers something called an SED waiver. We live in Kansas and heard about it through our local mental health facility. To this day I have never paid one single dime for the treatment and meds he's received there. Remember too, parents are the one's who know their children best, always follow your gut instinct and stick to your guns until someone listens! Good luck and take care! Hugs to your sweet daughter! :o)

Tammy - posted on 08/24/2010

Hi Nicole;
I have a son who was acting the same as your daughter at her age...I was told there was nothing wrong, it is a boy thing..well, i said ok, because i had a girl who was 5 at the time so i just let it be...felt like something was wrong all the time but, doctors, specialists told me no, nothing was wrong..come school time age 5 my son was struggling big time..teachers noticed he was different as well..then they , the doctors labelled him as having adhd, he has been struggling for years,being suspended from school for miss behaving ect..he is now 12, he was diagnosed with a form of autism called aspergers..
he had this diagnoses confirmed when he was 11..
All i can tell you is to do what you think is right..go with what your gut is telling you..no one wanted to beleive mw either..look at how long it has taken to get help for my son..doctors like to pass the buck..they do not like to diagnose children, label them..but, if they could do this at an earlier age then they could work on helping these children out at an earlier age...I feel your frustration..I am here if you need a friend to talk with...
.

Martha - posted on 08/23/2010

Nicole, I went through the same thing you are going through. My son started out developing normally, then at 19 months I had him diagnosed and it was autism. He is very high functioning they told me, but he might also have asperger's. He is now 3yrs old and is verbal, but still has a lot of difficulty communicating his wants and needs. He gets frustrated and sometimes very violent. My moher was with me when he was diagnosed and still made other people think there was nothing wrong with him and made me feel like I was the crazy one. I had a period when I doubted myself and thought am I going overboard, but then I would be with my son and it would all come back to me. My son did well with ECI coming to our house, but then was denied in the public school. I could have fought them, but felt that my son would not get the help he needed. Just remember to fight for your child and never give up. I found a lo of useful information fro the 100 days kit from autism speaks.org. You can order the kit and it has a lot of useful information. Also remember you are with your child more than anyone else and you know what your child is like. My son went through the same stages your child went through-eating dirt, paper, sticks. This eventually passed bc I got him some chewy toys that he could put in his mouth and he preferred those. Feel free to e-mail me at modisette07@yahoo.com. I would be happy to share any information I have or you just need to vent. I have had those days. He also suffers from GI issues and a Sensory Processing Disorder. It is not easy, but when you have people to help or support it will get better. You and your family will be in my prayers.

Laura Dean - posted on 08/23/2010

http://www.autism.com/ Lots of info here...plz take all the help you can get. My son is 10 1/2 now and you must get support! Your feelings are normal and trust your gut, but you need rest and support on all levels. PLEASE take care of yourself first. ASD are very challenging.

Becky - posted on 08/23/2010

You are not crazy- you are a mom fighting for your child. I do question the aspergers diagnosis. She is way to young for them to diagnose aspergers... and characteristically, children with aspergers DO not have delayed speach issues. She defiantely is on the autism spectrum... but an aspergers diagnosis will get her the wrong services.
Early Intervention, first steps, should provide everything she needs. They need to do a "global evaluation" or whatever your state calls it- but basically, they need to access 6 areas....and she could qualify for PT, OT, Dev't therapy and Speach therapy- I would say that OT and Speach are a given AND the diagnosis alone guarantees services so don't let them tell you know. As far as insurance, learn what your states autism mandate is... that will help you alot if your state has one--- in the meantime, your insurance should cover a certian amount of each therapy a year- not good enough but a start. Until your daughter is 3- I would go through early intervention. I have three children on the spectrum- two with PDD nos and one with aspergers. If you want to contact me this site, you can do so through my blog at www.asdperspectives.com. Hang int here- I'm sure our family thinks we are crazy, too, but my children are the priority... You are doing a great job!

Karen - posted on 08/22/2010

Trust your instincts! Keep pushing no matter what. It might be a good idea at first to find a great private speech therapist to get their idea of a diagnosis. That is how my sister finally got an answer on apraxia for her son. Once you feel confident in what you are dealing with, then you can make a game plan to move forward. Is there a DAN doctor in your area? Get on the list for all of the doctor's, therapists, etc that you can b/c there is always a very long wait for the good ones. If an opening pops up, they will contact you to fill in that appt. Most kids with neurological disorders have GI disorders as well. Scientists are finding that the stomach may have a lot of play in the severity of symptoms with these disorders. If the stomach can't absorb nutrients, the brain won't get what it needs to function properly. This was the most significant find for us with my nephew. He has made massive improvements since we figured that part out. Feel free to contact me if you want more info to research on what worked for my nephew.

As for your family, they will eventually come around. It's hard for them to see it b/c they're not there every day. Just be patient and they will come to accept the issue. Good luck and keep us posted.

Saundra - posted on 08/22/2010

A lot of you are very lucky. I was told I was crazy till my son was 13. He is now almost 15. My son is pdd-nos/aspergers. I was lost and confused. I have a 18 year old niece that will never live on her own and 4 nephews with aspergers. I am fighting the school and society on how they treat my son. Stand up to you family for your baby. You will be the only one who can for a long time. You did wonderful by fighting for this. Keep it up.

Carrie - posted on 08/22/2010

I have a 8 year old son with Asperger's. I have been extremely lucky as our best friends also have a 8 year old with AS, so we have had someone right there going through the same things around the same times. I cannot overstate the importance of getting support from other parents who are going through it. We have all been on the emotional roller coaster and it is perfectly ok to have down moments. I still have them! Just remember that it will get better. :) When we got the diagnosis, the first thing I thought of was all the things I thought he was going to be and be capable of just went down the drain. (I took it hard as you can see) Talking to other AS parents made me see that my plans weren't done for, just changing. The past few years since then have been a wonderful learning experience not only for him but for us. We are now his staunchest advocates both at school and at home. Learn everything you can about AS, embrace her differences and hang on for one of the best rides of your life!

Paula - posted on 08/22/2010

I can understand what you are dealing with when hearing from your Mother. My aunt was the same way, even after we got the diagnosis of moderate to severe autism. My daughter was diagnosed at 2.5 years old and she is now 6 years old. She has made a lot of progress with early intervention and public school system preschool - a school for children with autism. She now is going into first grade at another public system school. She is doing very well. She does not talk except maybe 10 words and she uses them intermittently. But with PECS, sign language and object communication, and a written schedule, she can communicate as well as have her know what is coming next. She is a VERY smart girl. For someone who cannot speak, she is able to get what she wants/needs from us and others.

There is so much to learn about autism. You will have your hands full with that. You will have to have a talk with your mother and let her know that the diagnosis is true and accurate and ask her for her support. If she still continues to not be helpful, then you need to distance yourself from her for some time. You need to go through the process of accepting your daughter's diagnosis. Many of us feel denial, depression, anger, loss - like we have lost part or all of our child. I felt angry that my daughter will not be able to care for herself as an adult. Some say she will, but not the experts. I am one of those experts and I look at how delayed she is and how she is about life's expectations and I do not see her being able to live on her own.

Anyway, I just wanted to let you know that it is important to take care of your physical and emotional health at this time. It might help to talk to a therapist or close friend and talk it all out. Saying it all out loud has a big impact on your emotions about it. I wish you all the best and hope you find peace and that your Mother understands and can be there for you and your daughter.

Carol - posted on 08/22/2010

It is sooo important to listen to that voice inside! Your instinct is there for a reason. I'm sorry you're family doesn't "get it". I'm still educating my family and it has been 6 years since my son has been diagnosed. Hang in there...keep up the good work...and remember that you are an AMAZING mom! Wish I could give you a hug!

Tina - posted on 08/21/2010

One thing someone told me was to treat the diagnosis like a death of some sort, something to grieve over. My daughter has A gENISIS OF THE Corpus Callosum and Autism, some days I want to stay in bed, this isnt what I had planned for her, but its what we have and I try and see the good everyday, along with a little help from MR Prozac, lol actually It;s hard and anyway that helps you, do it.

Christie - posted on 08/21/2010

Just remember...YOU know your child better than anyone else. If something doesn't seem right to you, trust yourself (your intuition) as a Mom. I have dealt with a similar situation and FINALLY at 7 yrs. old, people are starting to believe what I've thought all along about our son. I, too, doubted myself. I have 3 children and my son who has Aspergers was our first, so I had no one to compare him to...I just knew! Trust yourself!!

Tammy - posted on 08/19/2010

What does your mother think it is?

Jennifer - posted on 08/19/2010

Wow Nicole, reading your post was like revisiting our horrible beginning with Autism. Our son is now 10 and sooo much better than he was as a toddler. We invested a lot of resources between his 3rd and 6th year, read lots of books, went to support meetings and googled Autism until our fingers hurt. We found lots of help through Parents Helping Parents in San Jose.. their website is great! You are doing an excellent job as a mother!!!! By pushing the issue you found information that is critical to helping your child. Moms really do know best! Stick to your guns and help your daughter... someday most of the rest of the world will be on your side... there are a lot of us out here that are with you already!

Nicole - posted on 08/19/2010

Thank you everyone for all your support and responses, I am looking into autism speaks. It is a relief and slight weight off my shoulders to simply be able to clear my head and not be judged or thought to be overdramatizing our situation. I is also equally gratifying to be able to speak to others that have dealt with or are continuing to deal with similiar issues with their children. As you are the only other people who can truly understand, so once again thank you for all your kindness and support. God Bless.

Ann - posted on 08/18/2010

Nicole - my son was diagnosed last year at the age of 2 and I must say, I was in some denial for a while. In the past year the diagnosis has become more clear. I'm not sure if the signs are clearer or my mind is. Anyway I'm still on that roller coaster. And for services... I did sign up for the AutismSpeaks.com 100 day kit. Its was helpful but also puts you on a roller coaster ride. Anyway it helps you with starting points and resources for you in your area. It will also address the diagnosis / family dynamic issues. Good Luck to you and may these roller coaster become less bumpy for us all...

Melissa - posted on 08/17/2010

If you live in the states, you can have someone from the county come out and screen her. Is she behind on speech? If so, that's a place they like to start at that age. It's good that your doctor is willing to rescreen at only 28 months. I know the waiting game stinks, but unfortunately that's how it is many places, unless her behavior is so severe or her development is so far behind that something is glaringly wrong.



As for the family issue, I think many experience that. I know we did. My family assured me that all of my children were completely typical, shy, or just developing how they should for their particular gender. As it turns out, 2 out of the 3 have autism spectrum disorders. However, when they were raising our generation, many of the disorders under the umbrella had no name (unless you count strange, quirky, geeky, antisocial, weird, etc).

Debbie - posted on 08/17/2010

I had the same issues with my son. I just pushed until they had no choice but to do something it is an hard and constant battle. That we parents will fight day in and out. You have every right to feel as you do. But don't let those doubts cloud your judgement for your childs sake. research your area for a org. called Card(Centers for Autism and Related Disabilities we have one here in fl I use and it was helpful. As far as the GI issues diet helped but makes cooking for a family more difficult. Gulten free is expensive and very difficult to prepare. As far as your mother she may not know how to accept the fact that she has a disabled grandchild so denying it is easier bear with her she'll come around and will help out the most. Stae insurance is the best if you can apply for SSI and then medicad will always be there.

Sandy - posted on 08/17/2010

I too have my kid son state med. insurance, I have a disabilities worker and she got my boys labeled disabled thru the state so they will ALWAYS have medical insurance.
Family is tough, ecspecially older famliy memebers, they just dont understand Autism. I remember talking to my Aunt (of who doesnt have children) on the phone one day and the twins were having a meltdown, she proceeded to tell me what she would do with my kids... umm, that doesnt work with my kids. My mom also, I use to let her babysit my kids, now that I have two with ASD, I can't leave her alone with them ever. It is really hard to make the older generation understand when all the wanna so is spank them and think they are going to fix their behavior. My childrens father didn't believe the dx and denied he knew in court.. of which he now doesnt even see them two. It is perfectly normal to feel the way you are feeling, there is a greiving period, but you get over it quickly, your child is still your child and children with ASD are amazing!!

Sheila - posted on 08/17/2010

Hi Nicole,

Right now it is easier for your mom to "blame" you then see that something might be wrong. Her defenses are way up. She wants nothing more than for the world to be right, so she lives in denial.

It's for that reason you need to develop outside supports. Investigate and find out if there is a local support group near you. Moms who have "been there and done that" will be a HUGE resuorce of information.

Be careful with the flouride in the toothpaste...ingesting too much can make a child very ill.

You are entitled to feel what you feel....and you need to let your mother know, regardless of her opinion, you are doing what if best for your child. If she continues to live in denial as to how different your child is....take her to some playgroup with other two year old children...let her see the differences that exist.

BEst wishes to you and your family.

Sheila

Kim - posted on 08/17/2010

You did the right thing pushing to get the diagnosis. Early intervention is key. Remember that what is important is that you are helping your child, what others think doesn't matter. Go to the autism speaks web site and that will provide you links to resources in your area. It's usually not easy to get everything going, but you have to continue to fight for what your child needs. I am a nurse and have insurance through my job, however they specifically cut out all "developmental" issues as well as the diagnosis of autism. I had to get my child on state medicaid to pay for his PT, OT and ST. This really made me angry, but I had to do it for my little boy. No easy task either and very frustrating, but it's done now. Once all the red tape was over it took about 6 months for them to send me an approval letter. If you do this, make sure you send every piece of documentation you can from specialist. I had my child tested by a Neuropsychologist and that is who diagnosed him. Her report went a long way in helping me get him approved.

Good Luck and keep putting one foot in front of the other! You are welcome to contact me if you have any further questions, I will try my best to help = )