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Sweetum
04-18-2012, 10:29 PM
I am long time lurker here, and today I decided to register to see if I could get some advice from the wise mamas here.
We recently got a high functioning Autism diagnosis for DS. I am devastated. And this after some expectation – DS has been with EI for behavior issues. I have been reading that it helps to get super organized about life in general when someone has this type of diagnosis, and I know that I have a thousand questions, and this again, after navigating through EI.
- The tester administered the ADOS and did some cognitive testing. We had of course filled out the intial paper work answering a lot of questions about DS. And then she asked us some additional questions. At the end of the 3.5 hours she told us that DS has high functioning Autism. Is this the norm? is that how much effort and time that is required in providing such a diagnosis? Should we be getting a second opinion. We already underwent the asessment by the school district and they have said that DS does not qualify under state guidances to be Autistic, but since they see some concerning behaviours, they are providing diagnostic services, where they obesrve him in their special ed classroom for a period of 3months and then provide an IEP if they think it is necessary.
- Do people usually have a psychologist/psychiatrist (I’m not sure I know the difference at this point!) that they discuss strategies with and seek advice – someone who knows the child from the beginning of this journey and can advise based on history and knowing the child through his childhood; someone who can “quarterback” for us? Does insurance cover this cost?
- At this point the major thing to be straightened up is the school services. Like I said, DS goes to the special ed program for 5 days for diagnostic testing. The suggestion was to change his category to Autism and have them provide the right services.
o How do I find out what the right services are? I was not able to get a straight answer from them about what services are offered in general at the school, so I’m not sure if there is a link or someplace where I can find listed all the types of support that the school can offer.
o How can I get them to change their category? Will I need a lawyer? Will they do another assessment? What if the finding does not confirm at that time either?
o And more importantly what if I don’t like the service or the service provider working with DS? I am getting that feeling right now with the person who is running the SLP class. I don’t get any feedback from her – there seems to be no system of informing parents what is happening in the class unless I stop at pick up or drop off and chat with her and that is not the best time since she is transitioning one class out and another in. And I have felt that she and her aide are not super nice – not very loving, and she is open to giving time-outs which bothered me somewhat. And I got to know of the time-out only after DS told us! Anyways, I was wondering if I should be moving from this school district to live in one that I know provides good services. That brings me to my next question.
o How do I know whether or not the services are good – like I said, I don’t really know what is happening and I don’t know if there is someplace where I can get information on the quality of the special ed teachers.
- Another big thing that has been bothering me since the diagnosis is what are the negative repercussions later in life for DS with this type of a diagnosis? Will he be denied some jobs, will he be denied certain type of education, and will he not be allowed to play sports or get into special/advanced classes if he is able? Will there be a cap on things like life insurance? Will he be denied medical insurance? I understand that a lot of parents prefer to have a diagnosis since it opens doors to services, but I am not sure what the negative implications are.
- Is this diagnosis for life? I know I sound dismal, but what I am trying to understand is do kids ever “recover” enough to be no longer and genuinely considered autistic especially if they are high functioning?
- We are currently looking to enroll him in a preschool (mainstream/typical) and we are not sure whether letting them know of the diagnosis is going to scare them or if it will allow us to ask them to make accommodations in the class. One of the things that are holding us back is that we feel we are influencing their attitude towards DS. We feel we are putting them on the alert to expect some sort of an issue and we feel that would not be a good environment for DS. On the other hand, the same may just work if there is no anxiety in the caregiver.
- Do people usually get behavioral therapy covered by insurance? And how do we go about finding good therapists? I understand about joining local groups and support networks, but I just found out that there are a ton where I live! So, it almost seems like I need to weed out the support groups and networks first before I get any real help. Overwhelmed 
- At the risk of sounding selfish – is this the end to my career? Both DH and I have fairly high powered careers and we feel like we have crashed into something big, and looking at a tentative schedule of therapies and group sessions and school placements, (and having done this with EI so far) it seems like one of us will have to take on the job of taking DS to all these places, and that means I am going to have to quit – we need to keep the higher paying job. I feel like having a nanny is not an option since we won’t be able to interact with the therapists to figure out if he/she is a good fit, and additionally it is going to be prohibitive in terms of cost to have a nanny in addition to all these that we potentially have to pay for. And bigger is the fact that DS is going to take a really long time to get adjusted to the nanny, and we are not sure how we feel about someone driving our child such distances. It would be great to hear if moms of special needs kids here have a career.
I hope my questions haven’t offended anyone. If so, I do apologize. I am writing as the words are coming to my mind and I have a lot of those coming. Like I said, our family is overwhelmed and we are not sure how to go about this but know that there is a lot to be done, and will involve a lot of changes to our lives.
Thanks for reading this far. And thank you in advance for any advice/suggestions or words of comfort. We really need them.

crl
04-19-2012, 12:06 AM
:hug: The first parts of this journey are the hardest, in my experience.

I can only address a couple of points. The first is that I would seek a second opinion. I think if you have any doubts at all about a diagnosis it is worthwhile to go ahead and get that second opinion.

What is covered by insurance is going to vary by state and by insurance policy.

It is not clear to me where you are in the special education process. It sounds like they are still evaluating him? But they have a limited amount of time to do an evaluation and three months is too long. Did you request an evaluation? Have they completed one? Did they make a determination as to his eligibility for special education? You might see if there are any nonprofits in your area that provide education to parents and/or advocates at low or no cost. You might also find the Wrightslaw website/resources helpful.

Services are to be tailored to each child, thus the individual education plan. Every kid with autism is different. So it is hard to know what services are right for your child. Many special needs kids benefit from being in a regular classroom with support, this is often called inclusion. My child (whose ultimate diagnosis is ADHD) received placement in an inclusion setting with typically developing children but with a shared aid for the three special needs children in the classroom, an hour per week of speech therapy (to work on articulation, expressive language and pragmatics) and an hour per week of occupational therapy (to work on fine motor skills.)

Assuming the school-provided service provider has the right credentials you have no legal right to change that provider. This sucks sometimes, I know. Sometimes you can make arguments about what the appropriate placement is and switch providers by switching your child's placement (for example, my ds' former speech therapist only works at one preschool and one grade school in the district, if we had placed him in a different setting he would have and a different therapist).

I hope that helps a little,
Catherine

Gena
04-19-2012, 09:50 AM
Hi! Hugs :hug: and Welcome to the board!

My son was diagnosed with high-functioning autism a week after he turned 3. He will be 8 in a couple of weeks. I remember how hard and overwhelming it all is at first. There is so much information to take in.

You have a lot of good, important questions. Every family's experience and views are a little different, so you will probably get a bunch of different answers. So my answers are based on my experiences with my son and the experiences of the families I personally know.

I'm going to answer your questions in several posts.



- The tester administered the ADOS and did some cognitive testing. We had of course filled out the intial paper work answering a lot of questions about DS. And then she asked us some additional questions. At the end of the 3.5 hours she told us that DS has high functioning Autism. Is this the norm? is that how much effort and time that is required in providing such a diagnosis? Should we be getting a second opinion.

Our diagnostic process took about 5 months. During that time the Development Pediatrician reviewed his complete medical history; did blood tests to rule out metabolic and chromosome disorders; ordered an EEG to rule out seizure disorders, hearing, speech, and OT evals, and psychological testing. The psychologist did the ADOS and some other testing. DH and I and DS's daycare providers and his EI therapists filled out a bunch of questionnaires. The final diagnosis was the result of reviewing all these tests and information.

Our Dev Ped believes that autism is a diagnosis of last resort: after other medical conditions have been ruled out, autism is the possibility that is left. Because our diagnostic process was so thorough, we had a lot of confidence that the diagnosis was correct and we did not seek a second opinion.


- Do people usually have a psychologist/psychiatrist (I’m not sure I know the difference at this point!) that they discuss strategies with and seek advice – someone who knows the child from the beginning of this journey and can advise based on history and knowing the child through his childhood; someone who can “quarterback” for us? Does insurance cover this cost?

We see a psychologist at the local Children's Hospital. She was part of the diagnostic process and has worked with us since that time. We see her at least once a year, but more often if there are difficulties that come up at school or at at home. She has been a great help in assisting us to develop strategies to help DS learn and to manage his behaviors. She has written reports for the school to help us get the placement, services, and accommodations he needs.

Our insurance pays for psychological services and testing. It is covered by the mental health provisions in my insurance policy. You will need to check with your benefits coordinator or insurance agent to see what is covered by your policy. Your state may or may not have requirements about what needs to be covered.


- At this point the major thing to be straightened up is the school services. Like I said, DS goes to the special ed program for 5 days for diagnostic testing. The suggestion was to change his category to Autism and have them provide the right services.

What is his educational classification now? In my district, all children who receive special ed services at the preschool level receive the classification of "Preschool Child With a Disability" (PCWD) . It is not until the Kindergarten IEP that they get a more specific disability category.


o How do I find out what the right services are? I was not able to get a straight answer from them about what services are offered in general at the school, so I’m not sure if there is a link or someplace where I can find listed all the types of support that the school can offer.

Find a local autism support group and talk to other parents. They are the ones who can guide you through your local school system. Ask them if they are willing to share copies of their kids's IEPs. We do this in our local support group and it is very helpful.

Find out if your district or your county has a parent advocate or parent mentor. This person's job is to help you negotiate with the school district.


How can I get them to change their category? Will I need a lawyer? Will they do another assessment? What if the finding does not confirm at that time either?
o And more importantly what if I don’t like the service or the service provider working with DS?

The category only matters if it affects what services your child is offered. Sometimes this is the case and sometimes it isn't, especially at the preschool level.

Start reading the Wrightslaw website. www.wrightslaw.com (http://www.wrightslaw.com) Get a copy of their book "From Emotions to Advocacy" and read it at least twice. "All About IEPs" is another book book by them and is written in a very easy to understand format. Wrightslaw is the BEST source of information for understanding special education laws and procedures.


More in another post.

mytwosons
04-19-2012, 10:58 AM
:grouphug: Welcome.

I'm sorry that I only have a couple of minutes to post.

Preschool: We told his first preschool (a co-op) and the results were terrible. Looking back, it wasn't a high-quality preschool and they were in way over their heads. For his second year of preschool, we also disclosed (pretty much had to), but with opposite results. They were an early childhood center at a major teaching university. He did wonderfully there.

My son is now 9 and lost his diagnosis when he was around 6.

I would also encourage you to visit a DAN! (Defeat Autism Now) dr. to see what underlying medical conditions could be impacting your son.

In my case, yes, I did have to step out of the workforce temporarily while I focused on my son's recovery.

Best of luck to you as you start this journey.

Gena
04-19-2012, 11:22 AM
- Another big thing that has been bothering me since the diagnosis is what are the negative repercussions later in life for DS with this type of a diagnosis? Will he be denied some jobs, will he be denied certain type of education, and will he not be allowed to play sports or get into special/advanced classes if he is able? Will there be a cap on things like life insurance? Will he be denied medical insurance? I understand that a lot of parents prefer to have a diagnosis since it opens doors to services, but I am not sure what the negative implications are.

A lot of this will depend on his level of functioning, rather than his actual diagnosis. There is so much variability in kids with autism, that you really can't say (especially at the age of 3) if a child will be able to go to college, play certain sports, get certain jobs, etc. The diagnosis itself doesn't set limitations on these, but the challenges and needs that come with the disorder might.

Under current laws, medical insurance cannot be denied to children due to prior existing conditions. The same will apply to adults starting in 2014 (IIRC). What services your insurance will cover may vary based on your state laws and the specifics of your policy.

Life insurance is a problem. My DS was denied life insurance by a major well-known company due to his autism. After talking to other parents and to several insurance agents, I have learned that this is pretty standard. The insurance agents I spoke with advised that I try to apply again after he finishes puberty.

Really for us, and for the families we know, the autism diagnosis opens a lot more doors than it closes. And like I said, for the most part the closed doors are the result of my son's specific needs and challenges rather than the word "autism".


- Is this diagnosis for life? I know I sound dismal, but what I am trying to understand is do kids ever “recover” enough to be no longer and genuinely considered autistic especially if they are high functioning?

This is a really controversial topic and you will find people with strong feelings on both sides of the issue. Part of this is due to the fact that autism is not just one disorder, but is a whole bunch of things that get lumped together because they have similar and overlapping symptoms.

You can find stories of people who say that their children recovered from autism. There are some memebers here who have children who no longer meet the diagnostic criteria. Hopefully they will post and share their stories.

Personally, I know that in my son's case, ausitm is a part of who he is and is something that will be part of him for life. I do not knwo anyone IRL whose child no longer meets the criteria for autism.

One of the past things another parent once told me is this: The important thing to remember is that autsim is not a static condition. Autism is a different developmental trajectory. Kids with autism learn and grow and develop, just at a different pace and in a different order than typical kids. I have found this to be so true. I have needed to learn new education and parenting strategies and I have needed to adjust my expectations, but I get to celebrate so many little milestones that other people take for granted.

"High Fucntioning" simply means that a child has the ability to speak and a normal range of intelligence. It's not a predictor of pragmatic language, social skills, sensory disorders, adaptibility, etc. So in many ways it's not really a helpful descriptor. A person who is "high functioing" in one area and still be "low functioning" in another. For this reason, many professionals and parents are moving away from these terms.

Gena
04-19-2012, 11:42 AM
- We are currently looking to enroll him in a preschool (mainstream/typical) and we are not sure whether letting them know of the diagnosis is going to scare them or if it will allow us to ask them to make accommodations in the class. One of the things that are holding us back is that we feel we are influencing their attitude towards DS. We feel we are putting them on the alert to expect some sort of an issue and we feel that would not be a good environment for DS. On the other hand, the same may just work if there is no anxiety in the caregiver.

The questions of who to tell and how much to disclose are really personal decisions. A lot of it will depend on your child's specific needs and challenges.

We generally tell people who will be working with DS about his diagnosis. One reason is because DS does have specific needs that have to be addressed and he has specific challenges that require certain techniques. It is not fair to DS or to his caregivers to not share this information. We are not ashamed of DS's autism and do not hide his diagnosis. If someone is not interested in working with him because he has autism, it is better for all of us to know that up front.

Another factor is that by sharing DS's diagnosis, he is protected by federal and state anti-discrimination laws.

To be honest, DS has not done well in mainstream daycare settings. There are too many kids, the language is too advanced, and the sensory stuff is too much for him. He gets confused and overwhelmed.


- Do people usually get behavioral therapy covered by insurance? And how do we go about finding good therapists? I understand about joining local groups and support networks, but I just found out that there are a ton where I live! So, it almost seems like I need to weed out the support groups and networks first before I get any real help. Overwhelmed 

Well, the support groups really are the best source of information about therapists in your area. They can also point you in the direction of good doctors, as well as funding sources, special events, and community services. Plus it's great to get to know other families with autism.

Again, what is covered by your insurance will depend on your state laws and the specifics of your policy. You will need to get familiar with both.

Gena
04-19-2012, 12:09 PM
- At the risk of sounding selfish – is this the end to my career? Both DH and I have fairly high powered careers and we feel like we have crashed into something big, and looking at a tentative schedule of therapies and group sessions and school placements, (and having done this with EI so far) it seems like one of us will have to take on the job of taking DS to all these places, and that means I am going to have to quit – we need to keep the higher paying job. I feel like having a nanny is not an option since we won’t be able to interact with the therapists to figure out if he/she is a good fit, and additionally it is going to be prohibitive in terms of cost to have a nanny in addition to all these that we potentially have to pay for. And bigger is the fact that DS is going to take a really long time to get adjusted to the nanny, and we are not sure how we feel about someone driving our child such distances. It would be great to hear if moms of special needs kids here have a career.


It's hard.

I stopped working when DS was under around 2 because my DH took a job in another state and we moved. At that same time we started having concerns about DS's development and started EI as well as private therapies. After we got the autism diagnosis, we did a mix of public special needs preschool, private therapies, and at-home therapy. It was very intense and my son did not have a lot of down-time.

The summer before DS started kindergarten, my DH lost his job due to the economy. No one in his field was hiring, so I went back to work. DH was a (reluctant) SAHD for a little over a year.

I think it really benefited DS to have one parent at home during the early years. The first years of therapy were really intense and he needed to learn a lot of basic skills. I don't think he would have made the progress that he did if one of us were not at home.

Currently, DH and I both work FT and we both will for the foreseeable future. It's easier for us to both work now that DS is in school all day. He gets most of his therapies at school. We use the after-school childcare program at his elementary school and they have been very accommodating and this is a much better fit for him than the private daycares we used previously.

Our difficulties have to do with childcare for non-school days, since we have no childcare available those days. DH and I alternate using our vacation days to cover these. Summer care was a major stress-point, but I was able to get DS into a special needs childcare program for the summer.

The main reason that I am able to work is that I have a very flexible and understanding employer. My company has flextime and other family-friendly policies. This allows me to take time off to go to school meetings, doctor appointments, etc and make up the time on other days by working through my lunch and/or staying late. My boss is very understanding about this.

I do wish that I did not have to work. Although DS is still making good progress in his development, I think things would be easier and less stressful for him to have a SAHP and I think he would do better with one of us at home. There is a lot I would like to work more with him on, but there just aren't enough hours in the day.

Again, all these answers are just my personal experience. I hope that you have found at least some of it to be helpful.

Sweetum
04-20-2012, 02:21 AM
Hi Gena & everyone else who responded,

thank you so much for all the input. I really appreciate the time you took to answer my questions and providing your perspective and experience. I am still processing this information. I'll get back with more specifics once I have digested it. thank you again so much for the wonderful support.

-B

crl
04-20-2012, 09:03 AM
One more thought on a very minor point. On the issue of later in life repercussions, it is my understanding that the US military will not accept anyone with a diagnosis of autism. Whether this is good or bad for your child depends on your view of military service, the possibility of a draft and so on. Also we hav been told by school officials that ds' school records are confidential. It is our understanding that although this is true, there are some exceptions, including the military. We could be wrong about this and we nonetheless share all the information we have with ds's school because we feel that is very helpful to them and trumps and concerns about disclosure.

On the bigger picture, you have a lot on your plate. I have been where you are (although my son's diagnosis is ADHD, we were originally given an erroneous autism diagnosis when he was two). I remember wanting to figure everything out all at once and being overwhelmed. I suggest choosing one or two things that are the most urgent to you and figuring those out and then moving on. We worked on a second opinion and on obtaining public school services first and waited on figuring on private therapies and down the road questions. That strategy worked out well for us.

Catherine

Sweetum
04-30-2012, 08:18 PM
Our diagnostic process took about 5 months. During that time the Development Pediatrician reviewed his complete medical history; did blood tests to rule out metabolic and chromosome disorders; ordered an EEG to rule out seizure disorders, hearing, speech, and OT evals, and psychological testing. The psychologist did the ADOS and some other testing. DH and I and DS's daycare providers and his EI therapists filled out a bunch of questionnaires. The final diagnosis was the result of reviewing all these tests and information.

We started this process when DS turned 2 since he was slightly speech delayed and a medical doctor (neurologist, we saw him related to something else - DS was rolling eyes and he wanted to rule out seizures.) suggested the possibility of Autism, although it was a little too quick. But we followed up with a psychiatrist recommended by our ped who said it was inconclusive. At no point did we have any medical tests done. but we do have a follow up next week with an MD from the same group as the psychologist who gave the diagnosis of HFA. I really am not sure what to expect next week, but it would be great to know more about the types of tests that would rule out any physical/medical issues. Like for example, I am not sure what is meant by metablic issues - how is this tested? do they also check blood sugar, thyroid function etc? I sort of understand the chromosome disorder tests - blood work for all of us. We could never get the hearing test done because DS hated the sound rooms and would get really scared. In a period of 1.5 years we tried 3 different times, hoping that being slightly mature he would not be as scared.

Sweetum
04-30-2012, 08:25 PM
On the bigger picture, you have a lot on your plate. I have been where you are (although my son's diagnosis is ADHD, we were originally given an erroneous autism diagnosis when he was two). I remember wanting to figure everything out all at once and being overwhelmed. I suggest choosing one or two things that are the most urgent to you and figuring those out and then moving on. We worked on a second opinion and on obtaining public school services first and waited on figuring on private therapies and down the road questions. That strategy worked out well for us.

Catherine

Thank you, Catherine, for your thoughts. I agree. And I also agree with your priority of things - we are already trying to meet with the school district and figuring out if we need an advocate. We feel this is very important to get done before summer starts. We are also looking at immediate programs like social groups to help him right away - and they are expensive :( we are yet to approach insurnace with this but will hopefully get that done before we start the social groups. I am hoping we will be able to work out some agreement on payment.
I am also looking at some training for myself and DH - I keep feeling that we will be losing a lot time while we navigate thourhg the school stystem and insurance process. So, it may be worthwhile to get some training ourselves and work with DS. We are both reasonably smart people and understand our child and feel there is no reason training ourselves (just to work with our child) is not going to work. To that end, I have been looking at the P.L.A.Y. Project. It seems/sounds interesting but I have not yet been able to read much parent feedback on boards or any such place. Wondering if anyone on this board has experience. I also welcome other suggestions/techniques to get trained in. thank you.

Gena
04-30-2012, 11:11 PM
Like for example, I am not sure what is meant by metablic issues - how is this tested? do they also check blood sugar, thyroid function etc? I sort of understand the chromosome disorder tests - blood work for all of us. We could never get the hearing test done because DS hated the sound rooms and would get really scared. In a period of 1.5 years we tried 3 different times, hoping that being slightly mature he would not be as scared.

The metabolic work up was part of the blood work. They took a ton of blood and ran all kinds of tests, including thyroid function, liver function, lead, iron, and a bunch of other stuff I don't remember. The initial chromosome testing was also done. When we originally went through the process, chromosome testing was done with High-Resolution Karyotye. DS's results for this test wre normal. A few years later, Chromosome Microarray became the standard test, so we had that done. This test found that DS had a microdeletion on the 19th chromosome. These results are so unusual that the doctor's are unable to determine the clinical significance of it.

As for the hearing test, DS was not able to do it at that age either. He was not able to cooperate with a hearing test until he was 7 years old. At tht age he did really well during the test and we were even able to get him evaluated for auditory processing problems (which he has). So your son may be able to tolerate the hearing test in a few more years.

Gena
04-30-2012, 11:19 PM
I am also looking at some training for myself and DH - I keep feeling that we will be losing a lot time while we navigate thourhg the school stystem and insurance process. So, it may be worthwhile to get some training ourselves and work with DS. We are both reasonably smart people and understand our child and feel there is no reason training ourselves (just to work with our child) is not going to work. To that end, I have been looking at the P.L.A.Y. Project. It seems/sounds interesting but I have not yet been able to read much parent feedback on boards or any such place. Wondering if anyone on this board has experience. I also welcome other suggestions/techniques to get trained in. thank you.

I've heard great things about the PLAY project. DS was too old for it when it started up here, but all the families we know who did it really liked it.

DH and I were trained in ABA/VB (Applied Behavior Analysis/Verbal Behavior) methods by a Board Certified ABA Consultant. She also helped us set up our at home therapy program. We found the training and techniques really helpful and still incorporate some of those methods in teaching and interacting with DS.

mytwosons
05-01-2012, 10:25 AM
Thank you, Catherine, for your thoughts. I agree. And I also agree with your priority of things - we are already trying to meet with the school district and figuring out if we need an advocate. We feel this is very important to get done before summer starts. We are also looking at immediate programs like social groups to help him right away - and they are expensive :( we are yet to approach insurnace with this but will hopefully get that done before we start the social groups. I am hoping we will be able to work out some agreement on payment.
I am also looking at some training for myself and DH - I keep feeling that we will be losing a lot time while we navigate thourhg the school stystem and insurance process. So, it may be worthwhile to get some training ourselves and work with DS. We are both reasonably smart people and understand our child and feel there is no reason training ourselves (just to work with our child) is not going to work. To that end, I have been looking at the P.L.A.Y. Project. It seems/sounds interesting but I have not yet been able to read much parent feedback on boards or any such place. Wondering if anyone on this board has experience. I also welcome other suggestions/techniques to get trained in. thank you.

We did the P.L.A.Y. Project and I highly recommend it. LMK if you have specific questions.

Sweetum
06-02-2012, 02:44 AM
Hi Gena & everyone else.

It's amazing what a diagnosis/label can do to your mental state - we went from being devastated to making important decisions, decisions that we were on the fence, going back and forth about before we had the diagnosis. The diagnosis has pushed us to one side and we are happy in that we are at least at a point to move forward and not keep second guessing ourselves about what is going on with our darling child. I am writing this since I expect that a lot of parents are/would be like us - apprehensive that they will hear the "A" word (or any label), and I want to encourage them to face their fears and move to the next step, which is far more important than getting the diagnosis. I hope I did not overstep here, but I felt the need to express it.

DS has started to attend a social group by a reputed (but pricey :( ) organization here. We started this off while we continue negotiations with the school district, who at this point are not relenting in terms of their label. they are only giving the label of speech and language impairment and are converting the hours in the current speech and language classroom (7.5 hours a week) into an IEP (he will continue to go there work on similar things but with trackable goals). They have not offered continuation through summer but have offered 1/2 hour of 1-on-1 per week with the SLP teacher of that classroom - which is next to nothing. We have broached the subject of an IEE and are yet to meet with them. It seems from their emails that they are willing to reconsider his label. and that bring me to my next dilemma.

The SD has told us several times in the past that their SDC has very low functioning kids. they have also expressed that ABA is not good with generalization (yes, they said that!). In other words, they are trying to scare us away from the services. While we realize this, we have concerns ourselves about not being around kids who are similar in the functioning. I realize that this is likely not PC, but there is a good reason that autistic kids need typical peer models. I am thinking of asking for an observation of the SDC. But would it help? Also, I keep hearing (and feel I am experiencing it first hand) that school districts are notorious at withholding information regarding their services. So, how would I know that there is another class that exists that is not being offered to us but may be more appropriate for DS? I have tried to reach out to some parents on the support group but no information yet. Also, we are beginning to feel ESY is a lost cause this year since we are already at the end (almost) and we are still in negotiations. However, is it possible to give the school a 10 day written notice and start services privately and later have them pay for it? How complex is that process?

And on the topic of local support groups - I am glad all of you insisted on connecting with other parents and finding local support groups. they have been a mine of information thus far. I have realized that it is difficult to get specific support on a generic board like this, but easy for a local group. And it doesn't feel as isolated anymore. also, we belong to a specific ethnic group and none of the people we know have a situation like ours making us feel quite isolated. But attending the local support groups and meeting others from our group has helped us feel not so isolated. thank you for the push :)

Unfortunately we have not yet been able to start anything through our insurance. so, that's a big one still pending.

Meantime, we are hiring an OT student at a local university to spend a couple of hours (currently 2 days a week, and will hopefully be more pretty soon) doing OT type of activities with DS. We are still in the referral process for OT through insurance, but having done some before, we have some things that we know he will benefit from. And once the OT eval is done and goals are established she can help work on those while we see the OT therapist himself/herself once a week which is what our insurance will likely pay for.

We have also not yet been able to do any parent training courses. another thing to do. I have started to read the "Engaging Autism" but am not moving very fast. Gena, I am yet to get started on the books you mentioned - for some reason I am feeling daunted to go down this path by myself...need to get over that hurdle....

Well, that's the update. thank you all very much for your insight and advice. Much appreciated by our entire family.

Gena
06-05-2012, 02:14 PM
Thanks for the update. It sounds like your family is making a lot of good progress.




It's amazing what a diagnosis/label can do to your mental state - we went from being devastated to making important decisions, decisions that we were on the fence, going back and forth about before we had the diagnosis. The diagnosis has pushed us to one side and we are happy in that we are at least at a point to move forward and not keep second guessing ourselves about what is going on with our darling child. I am writing this since I expect that a lot of parents are/would be like us - apprehensive that they will hear the "A" word (or any label), and I want to encourage them to face their fears and move to the next step, which is far more important than getting the diagnosis. I hope I did not overstep here, but I felt the need to express it.

People react to the diagnosis in a lot of different ways. For me, getting the diagnosis brought a huge sense of relief. Because we finally had a name for what was going on. We finally had a direction to look into. And we finally had assurance that it wasn't our "bad parenting" causing all DS's issues, as some family members insisted.

It's great that you allowed the diagnosis to propel you into action. A lot of times people will tell you, "a diagnosis doesn't change anything" and I know they mean it well. But a diagnosis can change everything if it changes your perspective of the situation and opens doors to services and resources.



The SD has told us several times in the past that their SDC has very low functioning kids. they have also expressed that ABA is not good with generalization (yes, they said that!). In other words, they are trying to scare us away from the services.

Uhg. That's terrible. My son's SDC has kids of various functioning levels. But it varies by district. Some districts insist that if a child is verbal and does not have significant cognitive impairment, he/she must be in a regular classroom. Our experience with the disastrous attempts at mainstreaming our son show that this is not always the best choice.

If the school's ABA program does not work on generalization, they are NOT DOING IT RIGHT! Maybe you are better off somewhere else. A great ABA program can be wonderful, but a bad ABA program can be really terrible for everyone involved.


I am thinking of asking for an observation of the SDC. But would it help? Also, I keep hearing (and feel I am experiencing it first hand) that school districts are notorious at withholding information regarding their services. So, how would I know that there is another class that exists that is not being offered to us but may be more appropriate for DS?

Yes, you should be allowed to observe the SDC prior to making a decision about placement. In my area, we have parent mentors who work through the school districts and/or the county MRDD boards. The parent mentor helps parents of special needs kids navigate the system, offering insider knowledge and advice. (The parent mentors are paid by the state, so even though they work through the school district, they don't have a conflict of interest.) Maybe there is something similar in your area?



However, is it possible to give the school a 10 day written notice and start services privately and later have them pay for it? How complex is that process?

It can be possible, but there are rules about how it works. Did the district give you a publication that tells you your rights under IDEA? It should be in there.



But attending the local support groups and meeting others from our group has helped us feel not so isolated.

I'm really glad to see this. Local support groups are so valuable. It's good to be part of the local community.


I have started to read the "Engaging Autism" but am not moving very fast. Gena, I am yet to get started on the books you mentioned - for some reason I am feeling daunted to go down this path by myself...need to get over that hurdle.....

I understand. It's a lot of information to take in at once and it can seem overwhelming. Like I mentioned, we did an at home ABA/VB program. The books were a great help to me. But even better was the Board Certified ABA therapist who came to our house, trained DH and I in the methods, helped set up our program, and monitored our progress. She did a lot of hand holding in the beginning and that helped me gain confidence in the methods.

It's OK to take some time to decide what approach you want to take: PLAY, ABA, RDI, PRT, etc or if you want to combine elements of different methods. It's important to find an approach that matches your child's learning style and that works for your family.

It sounds like you are on the right track on stuff. Keep up the good work! :hug: