Update 7/21: DD8 saw a psychiatrist for full evaluation

[riu girl]

Gracyn at age 3/4 was diagnosed with severe/profound ADHD, ASD tendencies (but I was told over and over again that she was NOT autistic) and SID.

Since then I have seen behaviours that did not resemble ADHD, but something else. Finally the school board has re-assessed her and have come up with the diagnose Autism. I am so upset. I knew in my heart that for years she wasn't ADHD but to actually be told that, this is hard. I haven't received the official word yet (will at the school meeting) but the teacher has basically told me this is the situation (very high functioning ASD). I feel if I hadn't pushed for the re-assessment, I would be happier now. I only pushed for it because they are planning to take away her in school support next year since she didn't meet the criteria anymore (she is above grade level and her behaviour is much better then in the past). I thought that getting another diagnose might help me get support for next year.

Sorry to ramble.
My question: I am very familiar with ADHD but know very little about autism. Can anyone tell me about/point me to a web site that explains the basics of it so I will have a little better understanding before the official school meeting.

I shouldn't be so sad, I just am. Between this, my fathers terminal illness and DH may be losing his job next week (company might be closing) I just feel done in. Usually I am so optimistic and always look on the bright side, but I just can't right now. There are people on this board that have children with life threatening situations and I should feel so fortunate that Gracyn is physically so healthy.
Don't worry, I'm sure by tomorrow I will be ok.
Suzy V.

 

[Wish I lived in Fl]

I feel if I hadn't pushed for the re-assessment, I would be happier now.

Sometimes ignorance is bliss but there is a price. It seems like the earlier and more intervention, the better the quality of life for children with Autistic tendencies.

I'd rather know earlier and get as much help as possible for my child than look back with regret because child didn't receive additional help until failing in school or socially.

DH and I feel guilty because our DS had a milk intolerance that was not diagnosed until 18 months. He was irritable, screamed in pain a lot, would scream at 20 minute intervals throughout the night. Our Dr. said it was not a "true" allergy and to give him milk. He suffered and we suffered until allergist said it was an intolerance and not to give him milk or milk products.
DD we knew had the same intolerance from the 3rd day.Her life has been much more pleasant now we know what to do and not do.

 

[leise]

Rui Girl, you sound like you are having a very tough time, my heart goes out to you...

Just remember that your DD is still the same little girl, she just has another new label, for the purposes of her education. It can be horrible when you get a diagnosis, however useful it might be , whether you expected it or not, or even if you have been waiting for it or not. It takes a while to get your head round it, and it all seems so final. But she is still exactly the same person she was before this label was attached, her life goes on unaffected.

Hopefully it will prove useful that she has this diagnosis. Just take your time and read up about it all. It is ten times scarier when you are faced with an unfamiliar condition. The thing with autism though is that every child is so different and has difficulties in different ways, albeit in the same areas of communication , social interaction and flexibility of mind. Your daughter's particular brand, well you are the expert on that, you've been dealing with it for 8 years.

Sorry I haven't got any links, but hopefully someone else will post some..

Good luck and more hugs...

Leise

 

[Mellie0119]

I know in Texas, you can request an independant (outside) eval that the school district has to pay for. I'd feel better knowing, if they were trying to cut her services and help anyhow, this should prevent that. Keep in mind, that changing the name on the diagnosis is just that- a name change. It doesn't change the progess your daughter has made and will make and it doesn't change anything else about her. DS has been through upmteen evals and has had about 3 or 4 different diagnosis given. The most current one (and I'm thinking it's not right, but that's another story) is Language Disorder, NOS with PDD Tendancies. Keep pushing for a new eval if you don't agree with the current DX. We're going to yet another eval in the fall trying to get a DX that we feel is complete and accurate.

 

[roseprincess]

Riu girl,

I will keep you in my prayers about your dd, your dh's job and your dfather.
Sounds like you are going thru a lot right now.

As of your dd's new diagnosis of high-functioning autism, don't let it get you down. It's not the end of the world. In an earlier post a few months back, I remember you talked about your dd was in a writing or reading contest of some sort? Didn't she win? She is a very smart girl. You are proud of her, I'm sure. My ds, who is 8, is also h.f. autistic. He got in the gifted program at school recently! Sometimes there are hidden blessings with kids who are h.f. autistic/ Aspergers as of giftedness.
I'm sure it will take a little time for the diagnosis to sink in.
I'm hoping your dd will get her school services back now that she has the official diag.

As of autism websites, I would recommend www.autismillinois.com ( gives a complete explaination of autism.)
Also recommend www.autismmedia.org ( a friend of mine and her dh started this website to search for causes of autism.More of media based interviews of doctors, specialists about causes and different treatments for autism)

Also recommend www.autismspeaks.org

You can PM me if you want to talk, ask questions.
Keep us posted on how you are doing and about your dd's services.

Rosemarie

 

[lewdyan1]

I just wanted to send a your way. My children aren't Autistic,they have other labels. The most important thing is that you fight for the services she needs...Don't let the school use the label to dictate her services, but rather focus on her actual needs. Like the previous poster who said her child is in gifted, if you looked only at the label, her child would never be placed in a gifted class. Stay strong and know you have an awesome support here.

 

[Nik's Mom]

Sending hugs your way! I was in the same boat as you! My ds always showed some signs of autism. I took him to his pediatrician several times since he was 2, with the same complaints. Well, they kept saying, there's nothing wrong. I finally switched doctors and they said he had autistic tendencies or PDD. He started speech therapy at 4 and entered a special day class at 4. I continued to stress my concerns. Well, in March he was officially diagnosed with high functioning autism. I felt terrible, but now I realize that we did the right thing. It's important to get a proper diagnosis in order to get the right help for your child. Hang in there!
I know I took great comfort from the many kind words of comfort that I received from this board when we were going through our difficult time. I hope you will find comfort too. Hang out here when you need hugs.
In terms of reading about autism, check out http://www.autism-society.org

Sherri

 

[Rosie]

RIU Girl

I know how you feel. Despite telling Doctors and Teachers my fears for my DS it took 4 long years to get a similar diagnosis (DS has Asperger syndrome and ASD). Once the diagnosis came I was struggling to come to terms with the fact that my Mum was terminally ill with Cancer and only had twelve months left with us. Why does it never rain but it pours?

I felt utterly desolate and DH didn't accept that our beautiful boy had an incurable condition. We had a very difficult time. Sharing your feelings may help and you are absolutely typical of any loving parent to question your own actions.

Two years later from DS's diagnosis I am feeling very different. I am so proud of my DS and I work hard at knowing how all the Agencies involved with his Health and Education work. I cooperate with those who can help but don't assume that they are in control. We rejected Ritalin when DS was distressed and difficult to manage in School. I felt Ritalin was being given to control symptoms but not address issues directly. Although there are many common behaviours for those people on the Autistic spectrum, each person is different and it takes time to discover how best to help them.

I am in the UK so it would probably not be helpful for me to point you to information as it may not be relevant to you. Just know that there are many people who will listen to your needs as a parent, and please take care of yourself - your DD needs you more than anyone else in this world.

I hope others on this board can help you. We are thinking of you.

Regards
Rosie

 

[arubalisa]

Sorry to hear you have had all of these burdens lumped on you at one time. We are fostering to adopt a beautiful, just turned 9 yo dd. She moved in in September and had always been labeled "just different". Lucky for us, DH is an elementary spec ed teacher. He asked for an Austism eval in October. We had the diagnosis of Asperger's (high functioning autism) right before Thanksgiving. Our dd is the best thing to ever happen to us, but no two days are the same and we take each day as it comes.

Reading, lots of reading...
Autism Spectrum/Asperger's/PDD-NOS www.cdc.gov/ncbddd/dd/ddautism.htm
Autism Spectrum/Asperger's/PDD-NOS--- Symptoms www.cdc.gov/ncbddd/autism/asd_symptoms.htm
Asperger's & other autism spectrum disorders' criteria
web.syr.edu/~rjkopp/data/dsm_criteria.html
web.syr.edu/~rjkopp/data/as_diag_list.html

PDD (includes autism, asperger's) www.autism-biomed.org/dsm-iv.htm

Fantastic insight on "what the dsm IV means/meant to me" by a woman with Asperger's www.udel.edu/bkirby/asperger/asmeans1.html

Autism and biology web.sfn.org/content/Publications/BrainBriefings/autism.html

Autism/From MayoClinic.com/Special to CNN.com
www.cnn.com/HEALTH/library/DS/00348.html

Asperger's syndrome/From MayoClinic.com/Special to CNN.com
www.cnn.com/HEALTH/library/DS/00551.html

Speeech pattern for a child with Asperger's www.pediatricneurology.com/

www.aspergers.com/

TIME Magazine: The Secrets of Autism www.time.com/time/covers/...rgers.html

OASIS (On-Line Asperger Syndrome Information & Support)www.udel.edu/bkirby/asperger/

Autism Society of America www.autism-society.org/site/PageServer

http://groups.yahoo.com/group/AspergersSupport/

I hope these get you started. If you need support, if only a shoulder to cry on email or PM me.

 

[billysarmywife]

I am so sorry to hear that you have so many "hard" things going on at once. So many of these wonderful disers have offered a lot of very useful sites to you. So I just have one more to add www.wiautism.com. I worked for three years for this agency as a behavioral thereapist for children ages 2-12 that had "high functioning ASD". It is a truly wonderful program, that I would highly recommend! They offer services world wide, yes even in Canada! I want you to know that there is light at the end of the tunnel and so many great resources out there! If you are in need/want of additional information I would be happy to help. I wish you the best of luck! Kristi

 

[JoannaOhio]

I think there's going to be a program about autism on CNN Sunday evening (May 22nd). I'm visiting family right now, and I left my TV Guide at home, so I can't check it for sure.

Just checked the CNN web site.
"Autism Is A World " will be shown on Sunday, May 22, 8 p.m., 11 p.m.
and again on Saturday, May 28, 3 p.m., 8 p.m., 11 p.m.

Here's a link to the page with more information:
http://www.cnn.com/CNN/Programs/presents/

 

[mbb]

thinking about you...

 

[DisCharmed]

I just had to reply to this. I am a teacher in the UK and I've taught a fair few autistic kids over the past few years. I can know the initial shock of diagnosis is hard but it passes and your daughter will simply become Gracyn again. As individual as any other child.

I truly enjoy teaching ASD and aspergers kids more than any other (and I teach them in a mainstream class) they just have so much to offer. I teach year 1 (age 5-6) and I can usually teach them enough strategies over the year to get the kids fully independent within class.

I've been exactly where you are, terminally ill mother and a child obviously 'different'. But now I'm 5 years on. My child is a high achieving, fun individual, in the top few in his class. So chin up as we say in England and I wish you the very best with the school authorities.

 

[Stitchfans]

Sending hugs your way too.
I work with high school students muti needs. Some autisic and some downs syndrome. There is different "levels" of autisim from what I have seen with the students. I am by no means an expert. I am a teacher's aid. But as someone else posted she is still the same little girl. I wish you and your DD the best.

 

[lajones81]

Gracyn at age 3/4 was diagnosed with severe/profound ADHD, ASD tendencies (but I was told over and over again that she was NOT autistic) and SID.

Since then I have seen behaviours that did not resemble ADHD, but something else. Finally the school board has re-assessed her and have come up with the diagnose Autism. I am so upset. I knew in my heart that for years she wasn't ADHD but to actually be told that, this is hard. I haven't received the official word yet (will at the school meeting) but the teacher has basically told me this is the situation (very high functioning ASD). I feel if I hadn't pushed for the re-assessment, I would be happier now. I only pushed for it because they are planning to take away her in school support next year since she didn't meet the criteria anymore (she is above grade level and her behaviour is much better then in the past). I thought that getting another diagnose might help me get support for next year.

Sorry to ramble.
My question: I am very familiar with ADHD but know very little about autism. Can anyone tell me about/point me to a web site that explains the basics of it so I will have a little better understanding before the official school meeting.

I shouldn't be so sad, I just am. Between this, my fathers terminal illness and DH may be losing his job next week (company might be closing) I just feel done in. Usually I am so optimistic and always look on the bright side, but I just can't right now. There are people on this board that have children with life threatening situations and I should feel so fortunate that Gracyn is physically so healthy.
Don't worry, I'm sure by tomorrow I will be ok.
Suzy V.

Suzy,
I, too, am sending a your way!

Although I'm not a parent, I can only imagine what you are feeling. I'm guessing that you are feeling so many emotions and I know that is normal. Although it's not related to autism, I remember when my dad was diagnosed with cancer. I felt emotions that I didn't even know existed. I was scared about everything! I know that it may not sound like a comfort, but everything will work out in due time.

I have an aunt and cousin who have ADHD. Although they are much older than your daughter, they have both succeeded in school (and life, in general!) in part due to proper medication. I'm sure that you will be in contact with your child's pediatrician to help your daughter.

I am a teacher and in the past two years I have had students with ADHD and Autism. The best advice I can give you is to be an advocate for your child. You are doing the right thing by doing your research about Autism.

Use the resources that you have around you - members from the intervention team (at our school that includes the social worker, OT, etc.) Ask these team members what you can do - if anything at home? How can you help your daughter? In addition, ask them how they will help your child. What services can they offer her? What are the options, alternatives, etc? I've seen many different types of parents - ones who are sure they know what is right and ones who are intimidated by the team that has evaluated their child. I can totally understand how scary it must be when a group of individuals tells you about your child. Listen to their opinions and be prepared with your own list of concerns and questions. For example, I have a re-eval meeting tomorrow for my Autistic student. There are 17 people on the invite list because he receives so many services. To be honest, I'm a bit nervous about presenting my information with so many people present!

If you don't understand something, do ask! You have the right to call an IEP meeting at anytime while your child has an IEP. Therefore, if you feel that something needs to be addressed - talk to the special education teacher and, if need be, ask to set up a meeting. You are Gracyn's advocate because at this time she cannot speak to her wishes and desires about her education.

I hope that I gave you some good information and haven't scared you. If you have any other questions, please do ask.

Thinking of you,
Lisa

 

[riu girl]

Thanks for the support everyone. I have spent some time looking at the web sites that have been sent to me from fellow DISers and have some information now. The other day when I wrote the original post, emotionally I was a disaster. But by now I am much better. Gracyn is who she is and as a parent I can just support her as much as I can. Easier said then done, but at least I can try my best.

Over the years Gracyn has had a ton of intervention (OT, Speech, 3 behavioural therapists, infant/child development worker, private tutor, resource teacher, Physio, full time in school support, etc etc).

At this point she has been discharged from all services/programs except she has an Educational Assistant (in school support person) 50% of the day. Due to high academic achievement (she is above grade level in all areas, except writing) and huge behavioural gains at school, she will probably not have any in school support next year. Which I'm not too thrilled about although the school says this is good news. They say she simply does not meet the criteria any longer. I hope that is the case and not just a budget cut of some sort.

Question: What supports/services do kids at age 8 with either high functioning autism or aspergers syndrome (I won't know exact diagnose until official school meeting next month) usually have? There is a support group I am considering joining although I don't know if I will or not. Gracyn will not see the doctor until I get the official word from the school but the last time we saw the doctor all she recommended is to keep her involved with groups of peers (swimming lessons, brownies etc) to help improve her social skills (which are weak). She has never been medicated and the doctor took one look at her report card and said as long as she keeps getting the marks she does (A's and B's) , she doesn't need meds. Which is great since thats the last thing I want to do at this point.

Thanks again for all of the information and support shown on this board. Its funny, when I first got the word from the teacher that the evaluator has some information from the assessments, which by asking the teacher VERY direct questions turns out the diagnose will be high functioning autism or aspergers , I first wrote my OP on this board instead of calling my mom. I don't want to get all sappy, but I will say that there is a lot of love from DISers.
Again, my thanks to all who read and posted on this.

Suzy V.

 

[lewdyan1]

At this point she has been discharged from all services/programs except she has an Educational Assistant (in school support person) 50% of the day. Due to high academic achievement (she is above grade level in all areas, except writing) and huge behavioural gains at school, she will probably not have any in school support next year. Which I'm not too thrilled about although the school says this is good news. They say she simply does not meet the criteria any longer. I hope that is the case and not just a budget cut of some sort.

Whenever this is discussed with my son's IEP team, I say that my DS is achieveing at this level because of the services he receives and if they are taken away, then he won't have the scores that he is getting. He definitely helps the school ESE score averages. Can you approach it this way, that she needs the services in order to continue at the level she's at? Just a thought.

 

[riu girl]

I have never thought about approaching it this way. Thanks for the suggestion. The school has told me that the academic criteria for an Educational Assistant ( I think it is called in school support in the US) is at least two years behind. I have briefly mentioned (to the teacher, not in an IEP/IPRC meeting) that without having an EA with her, I'm afraid that she will have a harder time academically (obviously she will) but have been told that if she does fall far behind, they can always apply for support again. I think that the school thinks I am a worry wort (which I am). All I keep hearing about is the wonderful improvement in the last two years (behavioural and academic) and that it is time to let her try things on her own (without support). For me, it is just hard having a failure thrive baby/child to actually let her have much independence. Ex. I am afraid to take the training wheels off her bike, JUST IN CASE. If I wasn't so paranoid about her, I really think that in school support would have been taken away completely this year.

Back on track, thanks again. I will print out what you said and say those exact word at the meeting.
Thank you
Suzy V.

 

[tinkerbelle22]

Dear Riu Girl, I'm glad you're feeling better. It can sure knock the wind out of you when you get news like that - but like someone said very wisely on this thread earlier - she is still the same wonderful girl. She hasn't changed, only a label has. And as a mother of an 8 year old autistic son, I can tell you that the word autistic is like labeling your child "blonde" or "size 8 shoes", i.e. it is so broad and far ranging. My son is very sociable and affectionate, but has an approximately 4 year delay in speech comprehension. Others have above average communication skills but lack social skills. Your child hasn't changed, they've just decided it would be more useful to use this label. Hopefully, it will mean that you won't lose any services and probably stand to gain some more. The main thing is, is that it is NOT A PROGNOSIS. This label will not stand in her way to succeed as she was always going to succeed - beautifully I'm sure. FYI, in the states, kids with Aspergers/HFA often can receive occupational therapy, speech therapy, social skills therapy and even "Floortime" or Applied Behavioral Therapy. Big, big hug to you and your whole family...

 

[arubalisa]

Hi Suzy,

Our dd, is the same as yours, being above average in all subjects with this exception of writing. Her teacher was extremely lenient on her this yesterday but today is the last day of school. . .

Look at the links below. DH and I are especially going to emphasize in her IEP the "Modification/Adaptations/Support Checklist". Our dd has never had an aid, however it is necessary that the teacher adhere to certain items on the list-
1. Protect the child from bullying and teasing
2. Praise classmates who treat dd with compassion
3. Have a "buddy" in the classroom- Sit next to buddy so buddy can remind the child to stay on task, listen to lesson, tutor, assist in checklist for assignments due, homework and books which need to be brough home
4.Structure, structure, structure, a predictable environment, establish routines
5. Avoid surprises, reduce distractions
6. We will need to avoid teachers who are "screamers", they reduce dd to tears, even if the sreaming is not directed at her

Here are some other resources for you, I hope they help!

Asperger Info: Specially Designed Instructions For Educators: IEP
Modification/Adaptations/Support Checklist
www.udel.edu/bkirby/asper...klist.html

Be prepared for an IEP meeting - Partnership
www.partnershipforlearnin...icleID=367

Suggestions for IEP goals for students with Autism Spectrum Disorders
http://members.tripod.com/autism4dads/iep_goals.htm

Be Prepared For An IEP Meeting
www.partnershipforlearnin...icleID=367

Asperger Info: IEP GOALS
www.udel.edu/bkirby/asper...Goals.html

IEP Information and Tips
www.parentsinc.org/newsle...ptips.html