Losing Services, Probably Diagnosis
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I've not been here in about six months. My daughter is 4 years, 3 months old now, and she is having her services reduced through the school, (IEP meeting in a few hours) and may be losing her PDD-NOS diagnosis from the Dev. Ped. I would be ecstatic, except there are some residual language issues. First, I joined this board when she was 2 years old. About 2 years ago I had her evaluated by a speech therapist. She tested severely delayed in receptive language, with a 10-month delay, and moderately-severely delayed in expressive langauge, with an 8-month delay. She was observed to be explosive, to use phrases in a stereotyped manner, to use no non-verbal gestures and to avoid eye contact. She also had extreme sensory sensitivities and covered her ears in response to certain sounds. She had no imaginative play. She lined up her toys and beat a xylophone while asking for the same movie over and over again. She began therapy immediately, but we had to wait another year for a diagnosis. One year later at age 3 she had a seizure, was re-evaluated and diagnosed with PDD-NOS. A year ago she tested within the normal range for receptive language and in the 75th percentile for expressive langauge. Her social development was placed at the level of an 18-month old and she had ADHD symptoms. At age 3 she began speaking in sentences but was very echolalic, and at age 3 years, 3 months she finally began using non-verbal gestures (nodding and shaking her head). She quickly progressed to answering yes/no questions, and then engaging in reciprocal conversations. So now, at age 4, she has no echolalia. Her speech therapist says that her language is normal. She speaks in complete sentences on a wide variety of topics. Her social development is considered completely age appropriate today. She has met and exceeded all of her social IEP goals. She no longer displays any symptoms of ADHD. She is able to sit through Church and she participates well in dance class. Her imaginative play is now excellent. She plays complex games with tea parties and dolls. Cognitively she appears to be normal. She knows all her letters and 1/3 of the sounds, she can count to 20 and recognize all of her numbers, she knows shapes and colors and she can solve sequencing pre-math problems. Her self-care is 100% age appropriate, she can dress herself and picks up her toys. She has no behavior problems. She is well-behaved. She does have residual language and conversation issues, though. They involve abstract language, flexibility, and reciprocal conversations. If you met her, you'd notice that she still doesn't like to answer questions. When I pick her up and ask her about her day, she often says, "Stop looking at me. No." She doesn't like answering questions, but when she does, it's usually a one-word response. She only has 2 IEP goals now, in the revised IEP we are meeting about today. The first IEP goal is for her to be able to answer detailed, descriptive questions about a story she hears, and the second IEP goal is for her to hear a story and sequence the story with cards. She can't tell a story. I don't know yet how her services will be reduced, I will find out today. I am guessing that she'll just get speech less often, but she might be taken out of the 4-day a week class all together and just go in for speech. I don't mind that if she really doesn't need it, though. I am quite worried about her losing something she needs, but also confused about what it is she really needs. She doesn't qualify for a PDD-NOS diagnosis any longer, I know. What then does she qualify for? I thought maybe expressive-receptive language disorder, but on paper, she is normal. What should I do to help her with these higher order langauge skills? What can I do? Are there are any home activities I can add that would help? I am curious if there are any other parents with a child who developed like this. Her development was definitely autistic, not just simply "delayed" but those autistic traits are fading away. Hi, Bluebird, we joined about the same time, I remember you! My daughter sounds a lot like yours. Wish I could offer some help, but ... I dunno. It may be she will hit a time when she needs a bit of help, later; I am sure you will be keeping open to that and vigilant about it. Sounds to me like Floortime-type conversational style might be the best way you can help her, that and setting up play dates? She is in some activities, and that is terrific! Congratulations on her progress -- it sounds GREAT! I have no advice, but that is wonderful that she has progressed so much!!! It gives me hope.My dd just aged out of ECI and was tested for PPCD. She didn't qualify, and justifiably so.It's just that, on the one hand, you think great! All better! On the other, you wonder if the only reason she is better is b/c of all the hard work and it will all fall apart without it. What I came to is this - if I knew full well she wasn't where she needed to be and they were trying to deny her, then I would fight and get her what she needed. If, she was pretty much caught up w/ only a few things here and there to tweak (which is the case w/ my dd) - then I knew we had things we could do for her. We work with her, have her in Mother's Day Out twice a week for additional help / social setting, and most of all ----- b/c of our experiences, we know what we are looking at, and would recognize a regression if we saw it. If we believe she is falling behind, we can have her reevaluated at that point. Anyway, that was our experience, hope it helps. I'm happy with the plan for her. She's met all her IEP goals from last year, her speech therapist assures me her receptive and expressive language is now well into the normal range, she has no social or behavioral issues, and they even said they think she is smart and that she learns very quickly. She just has residual language issues with auditory processing, and they are going to continue half time services for another year. I got some advice on how to help her at home, too. You know it's almost hard to relax and let go and believe, 'she's really going to be ok'. I remember reading that first speeh evaluation and seeing the words, "severely delayed", and hearing the very point blank observations of autistic behavior, and how devastated, angry and in denial I was for the first couple of weeks.
Bluebird, can you please list all the therapies your daughter has received? So happy to hear of her miraculous success!! Hi. In response to Autti, thanks, I appreciate your concern. She will still continue to receive services next year, they have just been reduced by half. In my school district, Pre-School age children do not receive educational diagnoses of Autism. All children, regardless of their medical diagnosis, receive a YCDD diagnosis. (Young Child with a Developmental Delay). She is still classified as YCDD and will be until she goes to Kindergarten. At that point, she will be re-tested to see if there is a need for continuing services, and if so, she will get a formal educational diagnosis that is appropriate. The "lost diagnosis" I was referring to in the title of this thread is her medical diagnosis. I am fairly certain that when she has her annual check up in a few weeks she will lose the PDD-NOS diagnosis. But that is inconsequential, because my insurance doesn't pay for anything related to PDD-NOS. [QUOTE=BonBon] Bluebird, can you please list all the therapies your daughter has received? So happy to hear of her miraculous success!! [/QUOTE] To be fair, I have no way of knowing whether anything I did really impacted her development. I hope that it did, but I can't know for sure. She may have simply developed out of her problem without any intervention from me. Who knows? She's had a lot of therapy, or what I consider therapy, but you may be surprised. I've had to be very creative. I live in a state that offers virtually no meaningful assistance through the Regional Centers, and my health insurance did not pay for ABA. I've basically had to come up with my own "therapy programs" using the only resources I've had. I spent hours and hours researching both biomedical interventions and traditional therapy techniques, and I did my own interventions. She was GFCF for 18 months. I started the diet right after I had her first speech evaluation. She is still on rice milk, but I have transtioned everything else back into her diet. Supplements- Fish Oil. If I had to credit one single intervention as being the most helpful, it was fish oil. We use Cod Liver Oil now. I started Acetyl L-Carnitine and Alpha Lipoic Acid right after the fish oil at age 2. This is an amino acid/antioxidant combination that has been shown in clinical research to help Alzheimer's patients. The Acetyl L-carnitine stimulates brain growth and the Alpha Lipoic Acid is an antioxidant. Probiotics, Enzymes, and Grapefruit Seed Extract. Those three helped tremendously with her constipation and eczema. In fact, interestingly, she has grown out of both of those conditions now, too. Super Nu Thera (this is the B6, Mag supplement), High Vitamin C, and V8 Fusion Juice. I make sure that she drinks at least 2 cups of either Acai Berry or Blueberry V8 Fusion mixed with powdered Vitamin C everyday. The reason why is that the antioxidants work synergisticly. L-Carnosine and Zinc. We did this for about 2 months, and we had gains that she never lost, but I am considering another couple months of supplementing this again. We did visit two DAN drs, but ultimately I relied on my own judgement after reading research on the above supplements myself. Speech- At age 2, she began speech twice a week, and she has had this for 2 years now. This was provided by my health insurance until she began school at age 3, and then health insurance picked up over the summer. This was her only formal therapy with the exception of Special Ed Preschool Special Ed Preschool began at age 3 for four days a week, half days. Floortime-At age 2, I moved her into a very high quality, small preschool/daycare. I was just blessed to find this little preschool in my town just as they were opening. It's just a normal preschool/daycare, but they worked with me. They wanted to help her, and they wanted to be a partner with me in her therapy. They helped work on specific learning goals with her based on Floortime ideas. She continued to go here and then also to Special Ed. Preschool for half a day, so it was like getting a full 40 hours a week of very high quality teaching. Listening- I think she was 3 when I started looking into Listening therapy for auditory processing, and then found out it would cost thousands of dollars and there was no research backing any of it up. So, I decided to buy her sing along CDs. She loves music, and she loved these songs, and she wanted so much to sing along with them. So, she'd struggle to do it. She'd sing jibberish, but while she was struggling to sing, she was focusing on auditory processing. I also bought classical music CDs and play them for her at night and in the car. I am very busy and always driving, so car time turned into "therapy" for us, too. Comptuer- At home, I took advantage of her LOVE for the computer and for visual processing. We spent hours on sites like Starfall and NickJr working on problem-solving and hand-eye coordination and learning sounds and letters. Occupational therapy- Well, I couldn't get this. So, I decided to put her in dance class and gymnastics class for $45 a month instead of $500 a month. It was enormously beneficial to her. My own Verbal ABA- I really, really, really wanted her to have this. But I could not find anyone within a hundred mile radius, and couldn't afford it out of pocket for more than just a few hours a week anyway. So, we did our own program working on what ended up being cognitive and language skills in the evening after I got home from work. I bought books and read them and came up with my own ideas. It was tiring, and hard to get her to obey me, but the time we spent doing this helped her.
They cannot summarily take away and IEP. YOU HAVE TO AGREE TO IT. In the meantime, you can ask that a complete psycholeducational evaluation be done on your child and ask for a speech/language evaluation that includes a careful assessment of her pragmatic language skills. Do ALL of this in writing. BTW, if your daughter loses her diagnosis from the doctor, this is PRIVATE information and you DO NOT have to share that with the district. Once the school districts evaluations come back, if they do not indicate that your daughter needs continued services, do not stop there. Insist that the school district pay for IEE's in ALL the areas they've tested your daughter in and choose your own outside evaluators -- the school district cannot tell you where to go for your IEE's. If independent professionals whom you've chose agree that your daughter no longer needs any kind of services, you can agree to declassification. However, my guess is that she will still qualify for an IEP as Speech and Language Impaired. Hi, Tzoya! It's been a long time. Thanks for the advice. Right now, she does still have an IEP. She has two goals. The first goal is to be able to tell a descriptive story, (an expressive language goal) and the second goal is to be able to sequence a story with picture cards after hearing it (a receptive language goal). I agree with her team that these are the only things we need to work on right now. It is possible that as she gets older we will see other problems emerge as someone mentioned, and she might begin to look like a child with Asperger's. The school has assured me that if there is any regression they will increase services, and that they will not discontinue services unless there are no problems found in any of her tests. I will ask for an IEE if I am not convinced she is perfectly and seamlessly indistinguishable from her peers in 18 months, when she starts Kindergarten. I do wish that right now I could have her tested in depth, but the school district told me they do formal testing only once every 3 years. In her case, they will have to re-test her early at 2 and a half years before she starts kindergarten. If she has her medical diagnosis taken away, I think I am going to ask for a referral to a psychologist for more testing to confirm that she is functioning normally. School districts are REQUIRED to test every three years. Parents can ASK for testing every year. If the school district refuses to test after more than a calendar year has passed since the last testing, you can put in a state complaint (tho I probably wouldn't go that far at this point). If the IEP is going to be taken away, they HAVE to have testing that is no more than one year old. If the testing is less than one year old, you can ask for an IEE. Oftentimes, it's harder to get an IEP as kids get older. However, if your child really has no residual issues of any significance (and a full neurolpsyhological evaluation should tell that), then she should, by all means, start kindergarten as a typical student. I have seen this happen with girls -- they get early interventions and they appear NT by K. I see it more rarely with boys. Best of luck with your daughter. Wonderful that your daughter is doing so well! My daughter is nine years old. She has also had difficulty telling a story / sequencing events. It has been on her IEPs / private speech goals too. She has made progress, but has not caught up with her peers. So, now that this year there is more focus on reading comprehension, it is more evident that she is having problems (but not enough to be in her IEP apparently!). Anyway, I am now having her see a private reading specialist using the Visualizing/Verbalizing program for reading comprehension. She has made much progress in a short time - wish I had started it sooner. Anyway, just something to look out for. Make sure that when evaluations are done, that she be tested for reading comprehension. Good luck! ____________________ mom to 9 year old boy/girl twins (Asperger's/PDD-NOS) |
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That's a wonderful thing to hear after the devastation of the diagnosis.