new and in need of some quidance please
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| Mon, 11-28-2005 - 11:31am |
Hi, My DS is 5.5 and we are awaiting a dx from the neuropsych. I am expecting her to say Aspergers. I don’t even know how to pronounce it:( I have read several back posts up to last year and I have no doubt that this is it. I have never felt such fear and anger sadness and relief at the same time.
DS is a joy. I realize that whatever she says is not going to change that, but….So I have some questions…
DH and I have a 2 hour appointment with the neuropsych to discuss DS���s evaluation. He had a full neuropsych work up over 6 weeks. What should I be asking? I don’t think any of his strengths weaknesses will surprise me. I have a good idea of who he is. Are there therapies I should be asking for? What do you wish you had asked or known from the get go? Our insurance is covering very little of this assessment and I want to make the most of our time and money with the dr.
How did you tell you kids? DS knows he is different and knows something is going on. How did you tell family? People are going to have questions. Our family is not going to believe a dx having anything to do with autism. DS is adopted and it took and eternity to get them to get past adoption myths…We homeschool (DS is profoundly gifted and our public school could not/would not meet his needs). We’re still working on the family accepting that decision and now this…. So, did you make an announcement? Did you just let it trickle through the network? How did you tell your friends? Did you have articles and info in hand? I really think that we just want to enjoy the holidays and deal with all this afterwards. I don’t want people looking at him differently quite yet… Can you tell I’m trying to control as much of this as I can?
Do you share this with coaches or class instructors? How much accommodation can I ask for or expect in a setting like that? Even though I know this is coming, I’m kind of reeling. Thanks for any help you can give. I look forward to knowing everyone much better. Heather

Gosh, loads of questions. Lets see if I can help a little.
First, with regards to the appointment, I would start keeping a list somewhere now. As you think of the questions write them down. Spend some time thinking about your son, what you believe his needs are and strengths. List them all and any concerns or questions. It is hard to know what to ask when I don't know your son or situation well. I would definitely ask her to go over her recomendations that she should make as part of the report and what you should be doing for him.
As far as what services, that depends alot on his particular needs. I just started reading a great book last night that breaks down all the different types of services. You may want to pick that up and read it and see what is most appropriate for your son.
Since you are homeschooling you will likely be implementing lots of the recomendations yourself. I would focus on them one at a time and learn what ever info you need to about each one. Start with the ones you feel are most appropriate.
Most likely, he would benefit from some sort of social skills group or curriculum. I would find out what is available in your area either through the school district or through your insurance. Some are privately funded as well if that is an option.
Just because a child is homeschooled doesn't mean they can't access services through the school district. Often you can homeschool and still access speech/language, OT, and even social skills groups through the district. Depends a bit on the state and such.
I would look into Sensory integration as well and see if there are any modifications and sensory diet activities that would help him at home.
As for telling the children, we don't hide the word autism. My motto is to not speak of autism is to make it unspeakable. I didn't sit down and explain it to them until they were ready. I would treat it much like you would talking about his adoption or sex. Discuss it as he questions it and is ready more and more. As he gets older he will be ready for more and more of the info and the actual terminology. At that age we just told them that their brains worked differently and they had different strengths and needs. No different than my need for glasses. We use this point of view with everyone with disabilities including severe disabilities. My children know that all people are special, valuable and gifted in some way. They look for the gifts and well if they can't talk right or need a wheel chair, no big deal, mom needs glasses (so does Mike). As they got older we introduced the words autism and aspergers as who they were. They already knew the words and they knew they were different so no big deal. We also emphasize the positive aspects so my kids often will say they are "gifted" with AS. They also need supports and they know that but it isn't really a big deal. They are ok with it.
This past year I got Cait and Mike (11 and 9) the work books "Aspergers, What does it mean to me". They are awesome. Cait did hers in a day. Mike won't look at his. He isn't ready but it is on the bookshelf waiting for him to be ready.
Telling others, well I started with the sit down talk with the inlaws and waited for the trickle down thing. Didn't happen and my inlaws insisted we never told them, LOL. Then one day Cait announces "Grandma, my new friend as Aspergers just like me". Should have SEEN the look on my MIL's face, lol. There were other issues that came up with family memebers too. So after that I wrote a very concrete email to ALL of the family explaining my particular kids, thier diagnosis, thier history, and thier current needs and services. I also briefly explained AS as a form of autism without cognitive or language delays, that it is a wide spectrum and no 2 AS kids are the same, and some of the strengths and needs as it pertained to my kids. Then I provided links if they wanted more info.
I found I had to explain specifically how if affected my kids and what a huge spectrum it is because often if people who are in denial, especially if they don't have daily access to the child, just read the stuff that is out there they will find ammunition to say that child is NOT AS by picking out one or 2 things. I can't tell you how many times I heard my MIL (who supposidly didn't know Cait or Mike were AS) telling me that she didn't think they were autistic because of this or that.
HTH
Renee
After you get the dx, have your local school district perform a full evaluation to determine what services he qualifies for. Get an IEP. Even though you home school, he is still might be eligible for special ed services. I use the term "special ed" loosely. My DS has no cognitive delays, but does have a fine motor delay and possible language disorder. He receives OT and will be re-evaluated for the language thing. There are autism services in my county as well, but I need to get a separate dx for that because my county is saying my DS is not severe enough for that. I do think he would benefit from ABA therapy, which they do offer to some kids in my county.
Hello and sorry for the belated reply to your post! I have not yet had a specific conversation with DD about PDD-NOS -- she's very young (not yet 4), is very language-delayed, and it would mean nothing to her. However, I don't hide the term at all, and I will definitely talk to her many times over the course of the years as she gets more curious and wants more information.
In terms of telling family and friends, I've been very open with them. My DD only received her PDD-NOS dx a few weeks ago, but we had suspected PDD for quite some time, and so we'd had many conversations with family already. I wouldn't say that I made a big "announcement," but both my parents and my ILs had been aware that we were getting Sylvia tested through the school district and that we had an appointment with a developmental pediatrician. By the time we got our dx, Sylvia had already started in special ed preschool and was receiving speech and OT, so it wasn't a huge shock for anyone. MIL works in the medical field, so she had susptected that DD had some form of autism for a while, so she and FIL weren't at all thrown by the dx. My parents, too, know my DD well enough to have realized that *something* was going on with her, and now that we have a dx they've accepted it and continue loving DD for who she is, which is wonderful. With respect to other relatives, I've sort of assumed that it would trickle down, as you said. They all know (I think) that Sylvie is receiving services in school, and even if they don't know her "label," they are aware of her needs and have been very accomodating toward us (if, for example, we have to leave Easter dinner early because Sylvia can't cope with all the people/noise/activity, everyone seems to understand and not give us flack about it).
My close friends here in town have been right there with me at all stages of finding out Sylvia's dx, and they've been great about it. I've been very open with people I see regularly, particularly those people who have a lot of contact with Sylvia. I just feel like it's such a huge part of our lives right now that I can't just pretend the dx doesn't exist. I also find that the more people understand what's going on, the more helpful they are. You have to be careful, though, because you don't want people to see your child ONLY in terms of the dx, if that makes any sense. I've found that the more matter-of-fact I am when discussing it, the easier it is for my friends to accept it and then move on. Sometimes I use the phrase "autistic spectrum disorder," sometimes I say PDD-NOS, and sometimes I just say that my daughter is receiving speech therapy and occupational therapy in preschool. (I've noticed that some people really don't WANT to hear all of the specifics -- that if you start mentioning autism they get really uncomfortable and they change the subject -- so in that case, I just say that Sylvie is receiving some services and leave it at that.) In general, I guess I start with the most basic info (that she's receiving some services) and the more interested people seem -- and the closer to them I am -- the more information I give them. I have to say that the only people I've given written information about ASD to are my parents and my ILs -- because they have the closest relationship with DD, and because they have the most desire to learn all they can.
Because she's in a special ed class, all of her teachers etc. know everything there is to know about Sylvia! So I didn't have to worry about disclosing anything to them. But I think probably the best thing to do is to see what services he qualifies for through your school district. (This will probably mean another evaluation.) IMO, try to get all the services you can!
Jennifer :)
Hi Heather,
and welcome to the board. Everyone is giving you great feedback. You asked about teachers and coaches. I do think teachers in classrooms need to know as much as possible, but remember with everyone, it's the symptoms and how your ds deals with life that is the most crucial for understanding and appropriate accomodations. Many people who our son Malcolm has more casual contact with we don't necessarily use "autism" --- although if I use it, I say "mild autism" about Malcolm, as that is accurate and helps people understand why he doesn't seem "autistic" (based on misconceptions).
I do tend to explain "sensory issues" more than use the more official dx (yeah, PDD-NOS, try explaining THAT one to an outsider...lol). Esp. because it's the sensory issues that will wreak the most havoc on our son and how to help is the most useful information we can give. Coaches in particular need to know about Malcolm's sensory issues, as he can really have trouble with competition and focus when overwhelmed. Most of the sports activities we are having him do are not yet team activities, such as Tae Kwondo, horseback riding, swimming. He is starting with basketball drills now, as he is very interested in that sport. Also he likes baseball, so this year we may try that again. He HATED baseball when younger because of too much bench time in the hot sun...
I would definitely make a list of questions for the evaluator, ask for suggestions about school, future schooling, how to play to his strengths and weaknesses, therapies, classroom accomodations, long term plans and strategies, etc. The report the evaluator writes up should also give you lots of information, but understand that you will refer to the report again and again as you comprehend more about the dx and how to make adjustments for it as you go. I think the biggest help to your son's growth comes in your own understanding of how he ticks and what will help in each given set of circumstances. In time and with experience, this will become clearer and clearer to you.
Information is power! Big time true. We are in the process of telling our 8 year old more about his dx, but he does understand that his learning style is different than those children who go to public school. He goes to private ASD school where classes are small, sensory needs are met and all the kids are like him, so he doesn't have to feel very weird. In fact, I remember telling him that public school had up to 30 kids in a room with only 1 teacher, and he said "Poor kids. That's too many kids and not enough teachers!"
By the by, there are LOTS of accomodations you can go for to help him at school, which will require an IEP and getting services, etc. This will depend on his needs, and the evaluator should be able to help you start formulating those details. Then, here at iVillage, there is an IEP board with seriously smart parent/advocates that can give you loads of advice on writing those goals and then GETTING them, sometimes easier said then done. Also, many here and at IEP board are also special educators as well as BTDT parents, so loads of good advice. I would swing by there for asking lots of those kinds of questions!!!
I understand your list of emotions. The relief is real, because only as you truly begin to understand the challenges your son faces can you adapt so he can learn and grow. And nothing feels better than success, I can tell you from personal experience.
Stay in touch, let us know how the eval goes.
yours,
Sara
ilovemalcolm