I think I might pull my hair out!!

Cindy - posted on 11/27/2009

I'm sooooo sorry, the behaviors you describe are exactly what I face with my son regularly. I can only suggest to look for a second opinion. My son was diagnosed as autistic at age 5.... and the support and information I have recieved have been priceless and I wish I could share the people involved with you. But all I can tell you is to ask for refferrals, and continue to fight for your child because the sooner you are able to get a proper diagnosis the sooner you and your child will be able to work on handling meltdowns successfully and life will get better for both you and your child. Best of luck!

Stacey - posted on 11/27/2009

I also read your comment on your post about them admitting they may be wrong, I cant believe this sort of thing happens, its unbelievable, I've also had my struggles with Paeds, Doctors, Nurses and am still waiting for my son's diagnosis, it has been going on for more than 6 months. Whatever happens, dont give up, get a second, third, fourth opinion if you have to. Have you heard of DAN! Drs? It stands for Defeat Autism Now and they specialise in treating kids with Autism (Aspergers too I assume), google DAN! Drs for info and to see if there is one in your area. You may also want to read about gfcf diet, I found it interesting and have had my son on it for about 4 months and have seen some improvement in him. www.tacanow.org is a good site for info on gfcf diet and general info, and I think they might have a list of Dan Drs. Good luck.

Joyce - posted on 11/27/2009

Tina, it seems so strange to me that you've been told to WAIT until she is 7! We have been shoved around by agencies for one reason or another....not old enough ....not severe enough. Now, my son is 13 and they have all these wonderful programs but my son is now too OLD! These same agencies look at me wierd when they learn we have missed their services all these years....like it was MY fault. They click their tongues at me because "it's too bad that he's past the age deadline". I'm sorry to have to tell you this, but you just have to fight for your child. One of the main reasons I chose to homeschool my son is that I have to fight with him at home, and I knew I'd have to fight for him to get services....I didn't want, also, to fight the school system (I've had some past experience with that). The parents of special kids who I consider the most successful are the ones who have fought the hardest. I'm sorry it's that way, but that's the way it is. Don't accept what they are telling you when you know the truth in your own heart. You know best and don't let anyone tell you differently!

Alexandra - posted on 11/25/2009

Never give up on your child, its the stupid advice given by people who do not understand autism. By the sounds of it your child is displaying classic autism traits. Millie (my daughter) was diagnosed from the age of 3 you can diagnose ASD but it is more difficult to diagnose Aspergers. Aspergers children are not usually diagnosed until the age of 7 or 8 if not older. My advice to you is see you local/national autism group. We have the National Autistic Society in the UK with local groups. Even though they may not be based in your country check out the website, do a search on google, they give excellent advice.

Let me know how you get on and if you need any more help. xxx

Carol - posted on 11/25/2009

My profession was social work, but I am retired now. So, when I started this journey with my grandson, I was fortunate to have quite a bit of knowledge and experience in dealing with mental health, developmental, behavior and similar issues to back up my intuition. But the intuition was the most important thing - the thing that kept me searching until he was finally properly diagnosed. Keep trusting your intuition. It seemed like every time we saw his doctor or his counselor or the school psychologist, he got a new diagnosis, added to all of the previous ones. At the same time, he had some serious speech problems, caused by a hearing loss that was later corrected. I am sure that complicated things. My grandson has been diagnosed with Tourett's syndrome, OCD, ADHD, oppositional defiance, social phobias, depression, anxiety, PTSD, and on and on. I didn't always agree, but fortunately was able to discuss this with them. I also saw some things that didn't fit in any of the diagnosis, such as the way he walked, getting disoriented easily, refusal to wear certain kinds of clothes, his extreme sensitivity to noise, his inability to participate appropriately in a conversation. I also knew that it was unusual for someone to have so many different diagnosis. I strongly felt that everything must be symptoms of something larger. I knew that we were all struggling to figure it out, but I never thought about autism or Asperger's. Neither did the counselor or pediatrician or ,if they did, they didn't suggest it to me. Finally, for some reason, my grandson started occupational therapy. I don't remember why - it has been several years. The school might have recommended it. Or maybe his speech therapist. Anyhow, he saw an occupational therapist, who did a very thorough evaluation. She was the first person to put all the pieces together in a way that made sense. That was our miracle moment, the one that changed our lives. We still see that occupational therapist and she has helped in so many ways. Nick's counselor and his pediatrician immediately agreed that was the proper diagnosis. Everything was a symptom of Asperger's. Now that he is properly diagnosed, things are so different. I was able to get him into a special school for autistic children. I can't tell you how wonderful that has been - they understand!!! I am not getting all the disturbing reports from school.They also work on social issues. He now has friends. His grades are so much better; he just got a report card will all A's and B's. He is still not comfortable with strangers or going a lot of places, especially if they are the least bit noisy or if he has to interact with someone he doesn't know. We are working on that. He hasn't had a meltdown for a very, very long time. He knows that he is different, but that no longer bothers him. He is just so much happier. And I am so much less stressed. I know this is long, I get too wordy, but my point is that sometimes it takes a long time to get on the right tract and we never know when or who will put it all together so that it makes sense. The professionals can't always agree. The good ones are willing to consider other opinions and change theirs. This was a long road for us and it may be for you too. Don't give up. Trust your intuition to guide you to the right people. I was so blessed to have some really good ones. Don't quit until it feels right to you. You are doing really well in a very difficult situation.

Rachael - posted on 11/24/2009

Hi Tina, I was in the same situation when my son was little but I ddn't give up and finally when he was 10yo we got the diagnosis of aspergers. Yes it is easier to prevent so much anguish if you find out earlier, it wasn't from lack of trying believe me. I would just follow the books etc and treat your daughter like an asperger it won't hurt her at all. I wish I had of done that but we didn't even think of aspergers, I hadn't even heard of it!! I thought maybe autism maybe but when doctors told me he just needs a good smack!!! I thought well maybe it is just us???? Good luck anyway and stay strong, you will have bad days where you feel like giving up on life but then you have other great days where all goes well and you are all having fun and the info in the books works etc, it will all make you stronger.

Tina - posted on 11/24/2009

Carol, I was quite surprised also. Perhaps she had to reconsider the meeting because during the meeting I was in tears and was pleading with them to explain to me what to do for my daughter. Our lives are soo limited because of her set routines and sensory issues. I think she saw my despair and realized that as a professional you should help people when they are asking for it. She did admit that they were narrow minded b/c of the fact that my daughter was receptive to the speech pathologist. SHe went to observe my daughter in preschool today where she will see a completely different and isolated child. Maybe this will help her understand her a bit more. I will keep ya posted for sure. Enjoy your holiday everyone!

Carol - posted on 11/24/2009

I am so happy to hear what happened. I am pleasantly surprised that the school psych did all that she did and that she admitted her shortcomings to you. She obviously cares about the kids that she sees. I think that I would be more willing to listen to her new opinion. But keep on trusting your intuition. Please keep me posted about what happens next.

Tina - posted on 11/24/2009

lol, thanks Carol! I should post this update. After talking with my daughter's psych yesterday he was very upset that the school team was so misinformed. He is working on getting me a privatized eval next week. After I talked with him I called the team back to tell them to close my file and that I disagreed with their findings. The Psych from that team told me that she had thought about my daughter all weekend and wanted to observe her more, she is aware that she may be wrong about the age thing. She also disclosed that indeed this was the first time she had even had a referral for high funtioning autism in 10 yrs. and she had never even seen a child that had it. SO she did research on it all weekend and believes that they may be able to start some intervention for her. She did recommend that I proceed with the second opinion though. Can u believe that? If I were a mother that knew nothing at all about ASD I would have just walked out of there and said "okay, my child is just different." I thank God that he gives me the confidence and presence of mind to fight for my daughter. As mothers we have intuition, and most of us here have followed it!!

Tina - posted on 11/24/2009

wow, thanks Ashley, I had not considered weight. At first when she had her meltdowns I would hug her or hold her and she violently resisted so I didnt try it again.

Carol - posted on 11/23/2009

I would demand a second opinion. If you don't agree with an evaluation, the school system has to get a second opinion at their expense. This is part of the federal Americans with Disabilities Act. And please don't pull your hair out. My Aspie kid does and frequently has one or more bald spots. You will have the bald spots for a long time. LOL and good luck.

Ashley - posted on 11/23/2009

A lot of the time frustration comes from not understanding what is going on in their bodies and not being able to get out what they are feeling. I wrote you a private message explaining some deep pressure therepy that may help you out during a tantrum she may resist it at first but it may help. OT is awesome my son recieves OT 4 days a week through early intervention. There are also other things you can do. We are trying a weighted vest for him right now that seems to also calm him down. Just take a vest and add pockets. you can use things such as rice, beans, beads stuff like that in the pockets the weight has to be 15% or less of the childs bodyweight but it helps. I am here to talk if you need to.

Tina - posted on 11/23/2009

Thanks everyone for being so supportive, I really need to hear that I am doing the right thing. I am a soc major with emphasis on Research. This weekend I searched the university data base considering only articles in medical and mental health journals. Not once did I find any stipulation that a child could only be diagnosed at age 7. This info along with the advice of all of the parents who actually have children with ASD has convinced me to fight for my daughter, I will keep looking for the proper diagnosis. In an hour I will call her psychologist and ask for another referral. When I say fight for my daughter I really mean fight. Her father (we live separately) refuses to believe that there is anything wrong with her, just a bit different. After that meeting, he now has embedded in his brain that she is fine and that I just want her to have ASD. So, I realized that I am completely alone in this and there will be no support whatsoever from his end. This was a very hard thing to accept in the first place. At the age of 18 mos. her pediatrician wanted to get her tested. I let her father talk me out of it and went into denial that she would grow out of it. By age 3, her behaviors and meltdowns became more pronounced. When her daycare teachers told me I should have her tested I finally faced the reality. Now,that I can accept it I must find her the help she needs because that is what parent do right? We shape and mold our children so that they may become functional and productive citizens in society. MOst of all, I see the confusion on her face when she works out of a meltdown. She does not even understand the source of her frustration. It breaks my heart. Thanks everyone for being there for me .. it means more to me than you could possible know.

Juniece - posted on 11/22/2009

Hang in there, find a behavior neurologyst. They can test her properly. My daughter is 17 now. Educate yourself and fight, fight, fight. Do it for your daughter. You are going to have to learn what sets her off and try to avoid them or even try to warn her in advance and walk her through the situation. You are right she is not like the other kids, and never will be. Your life will change, but will get easier if you educate yourself.

Dawn - posted on 11/22/2009

When my son went to the neurologist, they didn't put him on any machines, or do any weird tests to him. He sat with him, asked us questions about his behaviors and any delays we thought he may have. By carefully paying attention to my child while he was in his office he was able to form a basic diagnosis. From there we talked with other psychologists and a psychiatrist who further "investigated" his findings. But even the basic diagnosis shed SO MUCH light for us that we were able to change things and begin improving his (and our) life. It is a long road to fix, as he was not diagnosed properly until he was 10 - almost 11. My biggest piece of advice I can say is - DO NOT WAIT - and get as many opinions as you feel you need to until your gut feels comfortable and things start to make sense. Good luck to you, and I am always available if you have a concern or just need to vent. Our path has been a long and winding one, so I have a lot to share and I learned a lot along the way.

Renee - posted on 11/22/2009

First of all I don't know where you live but my son was diagnosed with mild to moderate autism at AGE 4. There is no age 7 waiting thing that I have ever heard of. You need to see a developmental pediatrician, get a referral from your regular peditrician. Just because your daughter made eye contact one time in the session means very little, that was great but that doesn't explain the other symptoms. My son now has great eye contact but that doesn't mean the autism has gone away he still have plenty of other symptoms and behaviors that are not typical. You are right in questioning this and I really encounrage you to keep going forward. Take care.

Tina - posted on 11/21/2009

Thanks Rachel, good luck with the pregnancy and I am glad to hear there has been improvement already. I have seen my daughter go from a very limited vocab to an extended vocab since she started preschool in August. So the socialization is helping some!

Rachel - posted on 11/21/2009

My son has yet to be diagnosed as well. Since he was 1 I've noticed head banging, sensory issues (couldn't be held or even talked to by most ppl) and barely any eye contact. He would mimic movie lines and barely talked until just recently. We put him in Early intervention and of course they decided to say he was on the spectrum with PDD-NOS. Our peditrition didn't see it but decided to send us to get an evaluation just in case. We went for his preschool evaluation and they decided he qualified for the special needs program. We've still yet to put him in it cause lately he's had such anxiety leaving me. He has a teacher come to our house 3 days a week and I've seen LOTS of change. He's now talking a lot more and WAY more welcoming to change and ppl in general. He is still being evaluated though...

I would say though he LOVED his OT they are great.. They will also show you lots of sensory massages you can do and exercises that help them get that tension out..

I hope you keep your hair!! LOL though every other day I feel like that. I have a 1 yr old and I'm 5 months preg so lately my fuses run short... Good luck and if you ever need to chat I'm here!

Tina - posted on 11/21/2009

Thanks everyone, I agree! SHe definitely needs therapy, I think Sensory integration, occupational therapy, and behavioralist. I found an awesome place here in Las Cruces,NM that does these types of therapy for ages 3-9 and have her on the waiting list,just need a diagnosis to get my insurance to pay for it. The therapist noticed her hypersensitivity to stimuli immediately and thought she would benefit from the therapy.

ALso, I agree that despite the disorder, medical journals state that each child is still unique! Some children with AS will not display typical 1 or 2 typical behaviors. I think what frustrates me the most is that many professionals should further their education on AS b/c it is relatively new still. This requires periodical training to update new findings. As Socrates suggested, we should never stop trying to attain knowledge.

Sheila - posted on 11/21/2009

Definitely pursue an OT that specializes in sensory integration disorder....it sounds like your child needs a sensory diet. Go private if you must.

And, I know of at least four children diagnosed with AS under the age of 5. Wait until they're seven and you are losing precious time.

Good Luck

Sheila

Shelly - posted on 11/21/2009

I agree with Dawn....ask for a second opinion. See if there is a supervisor you can speak with. I have a son with Asperger's Syndrome and I drive a special needs school bus. Both my son and at least one autistic student that I drive, who is much more severely autistic, make eye contact. Until you get some cooperation, try different techniques that other parents of children with an ASD have had success with. Some will work, some won't, some will work for a while. And ALL children are unique, especially these children.

Tina - posted on 11/21/2009

Thanks so much Dawn!! I wasnt sure about a neurologist?wont they want to do an EEG test? My little one freaks out if strange people come too close to her.I am going to get back in touch with her psychologist and ask for another referral. I agree that early intervention is vital to her chances of a successful life. If I wait til she is 7 yrs. old she will be even more set in her routines. I will keep you posted!

Dawn - posted on 11/21/2009

I remember when my son was 4 and the daycare told me to have him evaluated for ADHD because he wasn't like the normal kids. First thing I felt was pissed off because who were these people to tell me my child wasn't "normal". So I watched as they started picking apart his every behavior and sitting him out as discipline. This caused emotional scars of rejection. I listened to schools and doctors and everyone else - but felt in my heart there was something more. My son is now 12 and only recently PROPERLY diagnosed with AS. If i had advocated for him from the start he would have seen a neurologist sooner and perhaps had an easier life. If one doctor tells you no - ask another. Ask for a referral to a neurologist. And DONT let them bully you into doubting your own judgements. When I think of all the meds pumped into my son and the damage to his liver and heart they could have caused (or may have caused already) I want to cry. Don't pull your hair out - get a second opinion. Be strong, be patient, and you will get through this.