New here - need guidance!

Discussion in 'General Parenting' started by quiltmama22boys, Jan 30, 2008.

  1. quiltmama22boys

    quiltmama22boys New Member

    I been lurking for a while, would like to introduce myself, and need some direction. I know this will be long, please bare with me!

    I’m a stay at home mom of 2 adopted boys; 7.5 and almost 6. My oldest came to us @ 5 days old, so far is on track academically, is very high energy but not ADHD. My youngest will be 6 in March and he’s our challenge. He came to us as a foster baby @ 10 months; unable to feed himself, roll over, crawl. Sat on the floor like a bean bag chair with a big grin on his face. I immediately knew something wasn’t quite right but didn’t know what. He was participating heavily in family reunification and life was very chaotic. The state totally ignored my pleas for intervention blaming his reunification schedule as messing up his ability to have a consistent learning environment. ?? At that point I was “just the obedient foster parent” so I played the game. Fast forward – after continuing to plead with state svcs, he was finally evaled at about 14 months – global developmental delays. At this point he was crawling, not babbling, no pincher grasp, head banging fiercely, lots of sensory issues were emerging. He finally was cleared for adoption @ 2.5 years old.

    In his short life, he’s gone the gamut of services Occupational Therapist (OT), PT, developmental therapy, speech. Now he’s in kindergarten and he’s made great strides but there are still many, many, issues – Occupational Therapist (OT) is a huge stumbling block. He can just about hold a pencil and is beginning to write, he shuns all fine motor activites, has trouble with self-care and eating, regresses in skill level from time to time. All along we’ve thought “there’s something else” going on. His birth history shows bi-polar, depression, learning disabilities in both parents; good possibility mom drank during pregnancy though he doesn’t look Fetal Alcohol Syndrome (FAS). A year ago, we had him evaled and they made a preliminary diagnosis of Pervasive Developmental Disorder (PDD)-not otherwise specified with Asperger tendencies, learning disorder-not otherwise specified, ODD, sensory integration, visionary scanning, developmental motor coordination. The school does not have this info. as we didn’t want him labeled early on.

    Today, we had an IEP to determine if the school will pick him up for speech, which would move him to Special Education category. He’s currently 504 receiving Occupational Therapist (OT) 2x/wk for 30 min each session. The school therapist tested him and he passed mostly with flying colors (usual for him). Our private speech therapist tested him more on the pragmatic side (this is where the trouble lies) and he shows a great weakness. Because the school’s testing shows he passed, there’s no academic or behavioral issues, and he doesn’t fall into the moderate to severe category, speech was denied. They didn’t even ASK the private therapist to discuss her report, nor was she really given the chance. I submitted my own notes of speech that we hear at home, which is a pragmatic nightmare. When I questioned them about it, the only one to reply was the school speech therapist who said she didn’t hear any pragmatic problems during testing or observations at school. She said she had spoken with-the head of Special Education prior to the meeting and they had gone over the reports with a fine tooth comb. The principal then chimed in and said the same. So in other words, the deck was more tightly stacked than we anticipated before we even walked in there. When we reviewed the school report we figured they’d deny services BUT we figured when the private report was discussed that would perhaps sway them or at least have them listen. Wrong. Then school therapist said she didn’t want to sound flippant or insult me but “you should loosen up and take a breath.” I wanted to throttle her but sat there composed. She went on to say there were a lot of kids that were worse off than my difficult child. How many times have I heard that excuse?

    Our private speech therapist has 1 more pragmatic test she just found and will give him that. The school said if he scored poorly we would discuss again. Clearly, we’re dealing with-2 kids – 1 who holds it together during school, is charming, obedient, is sliding thru with good memory skills. The child who comes home melts down at the door, cries, whines, fights, is a nightmare.

    How do I deal with this? The school makes me feel like an overbearing mother with 2 heads. Don’t they wonder why he’s receiving speech weekly privately? Doesn’t it occur to them they may be missing something even though it doesn’t stand out in school, which I find hard to believe! They advise to sit back and see how he does, “sometimes by 3rd or 4th grade real problems start to arise.” That’s my point! He has enough going on. Why wait until then to help him? I just don’t understand how they can sit there and totally disregard anything my husband and I have to say along with another therapist who’s tests show something different. I don’t get it.

    Thanks for letting me vent. Any guidance or advice?
  2. Lostparent

    Lostparent New Member

    I always got poor responses from the school no matter what private testing showed.I finally gave up on year six and started to homeschool.I moved counties and even states trying to get the proper help thrrough the schools.I wish I had found a way so I could help.Good luck and hang in there!
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there and welcome. We have a lot in common.
    My now fourteen year old son came to us at age two. Although he did walk and his gross motor was good, he was globally delayed developmentally in all other areas. His speech was very delayed. He babbled. He DID point and engage us. He could read at a very early age and loved to memorize things, but he couldn't converse. He banged his head on the ground when frustrated and never slept. I thought "autism" at once as did husband, but we kept getting shouted down. Back then, they didn't really know about higher functioning autism, such as Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers (and, with his speech delay, he wasn't Aspergers). He got early interventions and we dealt with it. He got wrong diagnoses too, such as bipolar and ADHD. His birthmother had lived a wild life while pregnant and Lucas was exposed to drugs and alcohol, which is one reason everyone feels he is on the Autism Spectrum. However, he was lucky and dodged the Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) bullet. Fetal Alcohol Effects (FAE) is hard to diagnose because the kids have the same facial features as other kids. The main symptom is inability to learn right from wrong and "swiss cheese thinking." The kids can know how to read one day and forget the next. Or they can count one day and forget the next. Or you talk about something with them in details and the next day they forgot it. It's actually organic brain damage. With our difficult adopted kids, it's very hard to get an accurate diagnosis and the right help. We had Lucas evaluated over and over again, and each year and new stuff showed up. He got his interventions and has GREATLY improved. There are days I feel he could actually live alone, with help, as an adult. Other days I think he'd do better with help, but NEVER the amount of help we thought when we first got him. He is a very good kid, like yours, and without behavioral issues, the schools let the kids slide through the cracks. I recommend posting this thread about school onSpecial Ed 101. The mods can help you there. I had to call our State Dept. of Public Education to get my son all the help he needed. He was diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified at age eleven (finally!!!!). After that, he was taken off his medications and he greatly improved in every area. I give credit to his early interventions and the ones he continued to receive. This kid doesn't even look autistic or act it in public--not anymore.
    My son still has fine motor issues. He is allowed to print instead of write. He can't get the hang of writing, but his printing is very neat and easy to read. He has many bizarre inconsistencies. He can read at a twelfth grade level, but only do fifth grade math. That's common with Autism Spectrum Disorders (ASD).
    I highly, highly recommend seeing a private (not school) neuropsychologist for another evaluation. They tested my son for twelve hours and gave us an intensive report. It was great. Things have looked up since then.
    Welcome again. Glad you're here. Nice to see one more adoptive parent.
  4. nvts

    nvts Active Member

    Hi! Welcome to the crowd! You'll find a lot of help here and a lot of experience and hand-holding and even some fun.

    Since he's on the spectrum, have you contacted the local Dept. of Developmental Disabilities? If not do so as you may be eligible for other services as well.

    I'd throw some of this info over into the Spec. Ed Forum as well, (just copy the whole thing that you wrote and paste it in a new thread in Spec. Ed and then delete the stuff you don't need) Sheila and Martie really know the rules INSIDE OUT and BACKWARDS!

    I can't write much, I'm way behind in stuff I have to get done before the buggers get home from school, but wanted to say "hey" and "Welcome"!

  5. quiltmama22boys

    quiltmama22boys New Member

    Thanks for the welcome and the responses! I'll post this over on the other board as suggested. Beth, I contacted Disability Rights about a year ago when we were still in the child development services arena and weren't receiving services. They couldn't help with-that situation so then I asked about when he entered school. She said they intervene when an agreement can't be reached. I still have their phone number!
  6. slsh

    slsh member since 1999

    Hi and welcome! I'm no expert but I think the school is giving you a line. A child who is receiving Occupational Therapist (OT) services 2 x a week should have an IEP, not a 504. I'm pretty sure about that.

    I'm glad you're going to post over in Sped 101 - they really know their stuff. Given your description and the results of prior independent evaluations, in my humble opinion there's no question your son should have an IEP with supportive services. You might consider sharing the full evaluations you have had done - the picture they suggest is a kiddo who needs not only Occupational Therapist (OT) but ST, PT, probably academic supports, and probably social supports. While I tend to be a cynic when it comes to dealing with districts, it's possible if they saw the whole picture they might be more amenable to providing appropriate services.... though I'd be ready for a battle and keep that advocate's # handy.

    I must admire your restraint. Personally, I would have jumped all over therapist. ;) The IEP is not about other students and related special education services are not (supposed to be) triaged. I also would have insisted that her comments be documented so that should educational difficulties arise in the future, it would be clearly documented that the SD failed to appropriately listen to an IEP team member (that would be you) about his *current* needs. But... I have low tolerance for this junk! :)

    Again - welcome and glad you found us!!