[MenloAve]

We just had our IEP meeting for our newly adopted daughter. Based on her testing they are saying she is at least 10-24 months behind her age level (3yr10months). Since she has made dramatic strides with us in the past 4 months they are saying she doesn't qualify in language/speech she just needs time to learn english and hugs. In her native language she would be scoring at 14-16mos. (not behind but actualy 14-16mos). We want extra support to bridge the gap so that she can start kindergarten on-time. And we do plan to give her hugs regardless of whether or not they offer services so we don't think that is a great recommendation

Any experience in appealing IEP recommendations?

Any experience in dealing with an expert that is emotionally sold on children "just needing time" to learn the language before services are offered?

Any experience with parents who waited for their child to obtain english language just to find out they really did need the services?

Any experience with all of this with a child that has a head circumference in the 3% range? I know she is so high at risk for having problems, she is so far behind, yet I'm being told - no just wait.

Please provide your experiences and recommendations for dealing with the system. I've had LD experts review her scores and they say legally they need to give her services based on the scores, but they are saying her scores are so good based on her background that they aren't giving services. Seems messed up to me.

Thank you - We'll probably submit our official appeal tomorrow.

[mommytoEli]

so does she have 2 more years before she can start k? and she's only been with you 4 months? am i right? if so...i would give it some time, but i'd also appeal. if i lost the appeal, i'd be sure to ask her to be retested when she started k, if i felt the need was still there.

it gets tough when there is a language barrier and other adjustments being made at the time of testing. as a teacher who used to sit on the iep team, i found that they gave a lot of weight to life circumstances when deciding if kids were where they needed to be and if they'd be serviced.

i once watched them deny a student speech services because they said she was unintelligeable due to "enviromental causes." they said bc her neglectful environment caused her to have speech issues, they did not need to service her. i did fight for her to get service, bc at the same time, as teachers, we don't care why we can't understand them, we need to be able to. so someone needed to help that girl. they did reverse their decision. you can get them to change their minds. but it is hard.

if you are going to appeal. start with doctors and any specialist you have seen. get their findings/reccomendations/concerns in writing. know that you are most likely fighting an uphill battle though.

the thing about the hugs- that's funny. good thing they wrote that out for you. lol

[MamaS]

She is 3 years 10 months old, she has been with you four months -- I would say the "experts" are right. She needs to spend time bonding with you and getting acquainted with her environment -- the language will come. And when it comes, it will come fast.
Sassy was 3 years five months when she arrived. We put her in a half-day K-3 class so she would be around other children. She did not speak in the class -- not at all -- for 4 months. She would do what she saw the other children doing and she would listen and react to her teacher speaking to her in Spanish but she DID NOT SPEAK in the classroom. Finally, just before Christmas she began speaking complete English sentences -- not words or phrases, sentences. She had just absorbed and absorbed all the words until she had enough to express herself and then she did. Twenty years later, she still talks a lot!
Ease up and give it six months. She will probably be talking a blue streak by then.

[MenloAve]

Yes, luckily she has two years until kindergarten so we were hoping that (if she has the capability) by the time she starts she might not appear as far behind since she has a late Nov b-day.

MamaS did your daughter talk at all in her native language prior to coming to you? I don't think I would be as worried if our daughter had language skills in her native language, but ours had none. Okay - she said yes and no, but she had never spoken other than those two words. She couldn't even pronounce her name. There are sounds she just can't say when she trys.

I worry since she hasn't been speaking in her native language I know that her brain hasn't made the connections that need to be made to stimulate the langauge capabilities. I also know that the brains ability to forge new connections is basically over by 4 or 4.5. (This doesn't mean you can't learn new things, it means that the brain has to figure out how to work with the electrical connections that have already been forged, leading to learning disabilities, etc.) So if I wait six months, I've almost lost the window for her brain to make as many connections as possible.

We walked into this knowing she was going to have a hard time learning: head circumference <3%, alcohol exposure, no language skills, etc. For some reason I just feel that waiting to see what can occur naturally, when I see the research statistics on her medical background, is hoping for something that just isn't going to happen. Then I have a child who is further behind and won't be able to start school on time - and will end up two years older than all of the kids because she has a late b-day (which right now we hope to be a big advantage to her).

I kind of feel like I want to deal with the most likely reality not hope that she will defy all odds. We know the liklihood of her defying the odds is so small. It is always possible, I just don't want that to be our expectation, because I don't know that it is fair to her.

But - if there are stories of defying all odds, then please let me know them.

She also has a

Originally Posted by MamaS

She is 3 years 10 months old, she has been with you four months -- I would say the "experts" are right. She needs to spend time bonding with you and getting acquainted with her environment -- the language will come. And when it comes, it will come fast.
Sassy was 3 years five months when she arrived. We put her in a half-day K-3 class so she would be around other children. She did not speak in the class -- not at all -- for 4 months. She would do what she saw the other children doing and she would listen and react to her teacher speaking to her in Spanish but she DID NOT SPEAK in the classroom. Finally, just before Christmas she began speaking complete English sentences -- not words or phrases, sentences. She had just absorbed and absorbed all the words until she had enough to express herself and then she did. Twenty years later, she still talks a lot!
Ease up and give it six months. She will probably be talking a blue streak by then.

[sak9645]

I would be less worried about the head circumference than about the prenatal alcohol exposure.

Many of our Chinese kids, for example, have head circumferences that are scary to American doctors, but most of them turn out to have at least normal intelligence and no learning problems. My daughter is one of them, and I've got to tell you that she is the most verbal monkey around, and an outstanding student who began kindergarten at 4.

However, prenatal alcohol exposure is strongly associated with learning issues, impulse control problems, failure to understand cause and effect, hyperactivity, etc. Depending on the amount the birthmother drank and when in her pregnancy she drank, a child could have anywhere from a few minor problems to some huge ones that will be with her throughout life.

Were the testers aware of the alcohol exposure? If your child had no prenatal exposure to alcohol, I would agree with the folks who wrote your IEP -- give it time. However, given the alcohol issue, I'd say that your child should have a lot of testing, and not just in speech, by people who understand the potential effects.

Of course, one problem with FASD is that it's hard to diagnose before school age. Toddlers and preschoolers are often impulsive, fail to understand cause and effect, and constantly on the go. It's only when a child is older that you can really see how much is normal child development and how much is FASD.

All in all, it's probably worth contesting the IEP -- and asking for testing on more than just language skills. But do understand that not all EI programs are good at dealing with post-institutional children and children with conditions like prenatal alcohol exposure.

If your resources permit, have your child evaluated at an international adoption clinic, such as the one at the University of Minnesota or the University of Washington.

The University of Washington, in particular, has an extremely well respected FASD clinic that serves both adopted and non-adopted kids, and it should be able to give you both a good overall evaluation and an evaluation of FASD issues. A good person to contact there, in this regard, would be Dr. Julia Bledsoe.

Then, have the experts help you to find good resources in your own community to pick up where they leave off. Yes, they won't be cheap, but some -- though not all -- of the care may be covered by insurance.

I commend you for thinking about these issues early. One thing that becomes very clear when you look at FASD or other conditions is that early diagnosis and early treatment DO help.

Hugs are not enough, with children like yours. Your child may also need some therapy to deal with emotional trauma caused by her history with her birth family and/or orphanage. Attachment issues will complicate the other problems that your chld may have, so it's also worth talking with experts about serious strategies to promote attachment.

Sharon

[mdaisyq]

First, did you sign off on the IEP report?

When they send you the results of the IEP meeting there is a form that they ask you to sign and send back. On this form it has check marks - do you agree with the findings of the IEP, do you disagree, etc.

If you disagree, say so on the form.

Did you provide the IEP team the results of the independent language assessment you had done for your child?

If not, by providing them with this report, it automatically triggers a re-evaluation per law.

Are you in the US? If so, many of the school systems have special ed parent councils that can provide guidance about how to navigate the laws, though, from personal experience, they don't often have much advice for parents of IA kids who come home after the age of 3 - most IA kids come home and will get EI and then go through the IEp process -that is what the school systems have dealt with.

I had to fight for over a year to get our son a speech IEP. His cleft lip and cleft palate were repaired in China when he was 18 months old and he came home at 34 months old. He had hearing loss (since corrected with ear tubes) and was in a tiny orphanage with older mentally disabled children. He had no concept of verbal language as a means of communication.

Personally, I would not emphasize the head circumference - this will carry no weight at all with most schools.

Our school system refused to even test him for speech because they said he was speaking his native language (he was not) and to treat him as having a speech diability would be a violation of his civil rights. In addition, when they tested him for physical disabilities (he was emaciated when he came home and had no mjuscle mass whatsoever) they said he did fine for a child his size (he was the size of a 16 month old) - they should have tested him for a child his age.

I was so angry when he was denied IEP services, and had no idea what his and our rights were under the law.

The spec ed council was the best resource for us in terms of learning what our rights were and what resources were available.

I, too, was so worried about would our son have enough speech by the time he went to Kindergarten. He started K this fall and while his speech is difficult to understand, he is mainstreamed in regular K and loves it.

Melissa N.

[MenloAve]

We did sign the IEP report saying we disagreed with the speech and language assessment but agreed with everything else. They gave us the number to call to appeal the decision.

Truthfully, I'm even more upset by your story than ours. It is hard to believe that you had to fight for a year. I'm glad to hear your son is doing well.

Since I've slept on this, I've calmed down a bit, but I'm still pretty annoyed. I spoke with the speech person the day before they tested our daughter and when I hung up the phone I said, "She just lectured me on how we are choosing to work with our daughter on learning colors (she has Nystagmus and we were worried about color blindness.) We won't get services, she has an attitude and thinks all adopted kids need to learn is love." Now you think this "attitude" was from lack of knowledge. Nope she is an adoptive parent - international nonetheless.

Then to rub salt in the wounds we spoke with DH's mom and she said that the speech therapists told her the same thing years ago re: DH's little sister adopted from Korea as an infant. They were wrong, she is MR but in the high functioning category. By the time it was caught the early intervention work that could have been done was past. --Current research now shows that for those kids early intervention between age 2-5 adds 10 points to your IQ. DH was livid last night.

Thank you for your advice on finding the local parent group. I'll see what I come up with.

[MenloAve]

In our case our child is from europe so the head size comparisons are relevant. Interesting that schools won't care about this. I guess I'll just have to fall back on the fact that she is more than two standard deviations behind and therefore she qualifies.

We don't know as much about our dd's FAS and alcohol usage. She was removed from two alcoholic parents. The orphanage told us that she didn't have the facial features or personality traits of FAS - which has been mostly corroborated. The IA doctor said she doesn't have the facial features for FAS. Nor is she ADD/ADHD, she has an attention span and can stay on task. However, I think she might be a bit hypervigilent so if she doens't feel safe she sometimes comes across as having an attention issue. She very clearly understands consequences and reminds herself of these consequences days or even weeks later in the same situation and transfers the information to a slightly different situation. She is small, was premature, and does have an issue with her eyes. We are seeing a psychologist that is considered to be the best in the state for FAS and attachment issues. He says it is too soon to know what impacts she may have from the alcohol, we have to track her closely. Maybe it will just be size and her eyes. We just won't know, but she is being tracked.

AND yes they knew about the alcohol. The physical therapist thought there might be a nuerological issue and is glad to see she has an appointment in two weeks just to follow up on her eye issue and a few other things. How one person on the IEP team can tell me they are worried there is a nuerological issue and the other can tell me she needs time, is beyond me.

Thank you for your feedback. This helps me make sure I've got all of my bases covered.

[MamaS]

Menlo: My daughter was talking mostly babytalk and a few words - turtle, corn, mama and MINE (in Spanish). Her head circumference was also small -- so small that the doctor who did the physical in her native country advised me to reject her and ask for a "better" one! As if!
Her head is still a little small, but all the brains are working, the language is there (oh is it there) and with a fluffy hairstyle she looks great. She also can wear hats well!

[mommytoEli]

what they are looking for to qualify her is how is she currently unable to access education. how is she currently disabled. if you and your dr think the small head circumference is an issue. figure out how it is impacting her learning somehow, and document that. document how her speech effects her ability to (something educational), and how her FAS keeps her from accessing (something educational). draw the connections for them. make them see how the problems she is having NOW effect her NOW, and also will effect her later. does that make sense? don't dwell too much on the later, as they are mostly concerned about the present. this is a tough battle. be armed with information!

it is frustrating to not be able to get the help you need for your kid. i've tried more than once with more than one of my kids....and have been denied more than i've been approved, when clearly (i think) at the time my kids needed help. my oldest was denied an iep originally bc his iq was low, they said he performed at his ability level. he was in the 3rd grade and couldn't read. but with no help from them...6 years later, he's almost a straight A student. my 6 year old last year was losing information.....seriously getting dumber before my eyes. i pulled him out to homeschool after i got nowhere at school, and he is excelling. my 3 year old has sensory integration disorder. he walks on his toes, hides under tables and makes snow angels in the carpet if it is too loud, but they didn't want to help him either. about 6 months ago, he taught himself to READ. so....as frustrating as it seems now....sometimes not getting help at school doesn't keep a child down. you know?

hang in there and don't give up yet.

[MenloAve]

Thanks for the advice and information. I do know that we can get the services elsewhere since my mom has been doing an excellent job. She just doesn' t live close (1/2 across the country). But I feel like I've already paid for these services since they are tax payer funded. I hear stories like some of these and I have to wonder who exactly are they helping because I thought that our tax payer money was going to help kids with lower IQ's, sensory integration issues, ESOL, etc. Seems crazy and not fair.

I thought that the NOW would be justified by the fact that she scored in the 12th percentile and that you can't really call that average. It fits the definition of developmentally delays by a long shot (25% below average) and every expert that looks at her scores says so. Just this one lady feels that due to her background she is doing marvelously, so she must not need help. AND her teachers, plus my mom who is an educator, say there is something more than just needing time to learn english.

I guess we'll go through the admin review and then on to an independent evaluation so that two professionals can fight it out.

Thanks