dev pedi findings

[Anonymous]

Hi everyone!

I wanted to update again on Kaden. We found out a lot of what is going on with Kaden and it really makes sense.

After another full eval at his follow up, they told me they could see a good fit for Aspergers but that they had to be careful not to over-dx for that. It is usually between ages 6-8 that they dx that. I was a little annoyed with that…if you SEE it now..what’s the problem. I was annoyed until they told me that the treatment would be the same b/c he def had OCD (obsessive compulsive disorder) This is why everything is a ritual for him. And for years, when he is picking at his food, if someone interrupts him, he must start over.

It’s the same in the bathroom, dressing time, etc. And it is why it takes me ALL DAY LONG to do basic things with/for him. They were very upset that insurance did not cover the feeding program for him b/c he had gotten taller and that was basically where is weight gain was. With this dx, they are hoping that insurance will cover his behavioral therapy to help him overcome some of these rituals that make him do some of these routines. He will also be in speech therapy for his mixed epressive-receptive language disorder and articulation disorder that just adds to his frustration.

They also want him to start preschool and I am trying to get him an IEP which even with his problems (2 speech disorders, OCD, possible aspergers and hypotonia) is not easy. I cannot just drop my son off and expect him to go with the flow and play, eat and potty like the other kids. I wish I could and I have to make the County understand that. He could wander off and get lost in the blink of an eye. He has irrational fears. He stand in the bathroom for an hour if someone is not there to repeat to him what he “needs” to hear, etc etc.

Sooo…that is where I stand right now. Something TOLD me to hold off on Nursing school in the Spring even though I was ready. 🙂 We are in the middle of moving to a new house that will be either a rent-to-own (yay!) or a longer lease and things are finally going good for Kaden. So that is totally worth putting Nursing school off for, I think!

jilly782009-03-03 08:15:56

[Anonymous]

Hey there Jill,

so glad you have answers! It is hard to hear “lables” but so good to feel validated and know what to do to get help for your child!

Call your local school district! You child should qualify for the program and the school district should have a special Ed preschool that will take Kaden and work with him. Some are better than others, believe me, but with the dev. Ped evaluation, you should automatically qualify without question! Call your local school district today and ask to speak with the director of pupil services or the special ed coordinator. I’ll bet you will have him in by the end of the week.

Hang in there! This is our second child going through the district special ed preschool, so btdt if you want to chat or vent.

Sorry I don’t have more time right now, but saw your post and wanted to let you know that I am happy you got some answers! and there IS help out there now!!!

Ann Marie

[Anonymous]

Hi Jill,

I’m glad to hear that you got some answers for Kaden and hope that it leads him to get the help that he needs. About the dev ped not wanting to diagnose Asperger’s, I actually really respect that. A lot of kids in the younger age bracket under 6 years old are being diagnosed prematurely, which leads to an incorrect diagnosis. My friend’s child was diagnosed at age 4, and now at age 7 he does not fit the diagnosis- not because he the criteria changed, but because he got older and outgrew a lot of the tendencies. Also, about the OCD, have you considered getting him evaluated by a pediatric psychiatrist vs. a developmental ped? I think that they use different standards and perhaps tx protocols. Hailey has been assessed by a pediatric psychiatrist in the past. Hailey has trichotillomania, which in older kids is related to OCD, in kids her age not necessarily.

Anyhow, good luck with the school board. I found it more challenging to deal with them than I expected, and hope that Kaden’s new diagnoses help you to move forward.

[Anonymous]

my son, ian, also went to a developmental preschool for 2 years through our local school district. he had some autistic symptoms, but was never diagnosed as autistic. when the school was ready to send him to kindergarten, my mom told me that she would pay for a private preschool if i would keep him out of school for one more year. so he had 3 years of preschool before he started kindergarten.

when he was tested to see if he qualified for the program it was so funny. we had been frog hunting recently as a family for fun. when he was in with the psychologist, no matter what she asked him, all he would say was “spots on frogs.”

when he first went to school, when i asked him what he had done that day, all he would say was, “i ride bus.” he gradually started talking more and eventually we could actually communicate with him.

[Anonymous]

OH Jill, I am so very happy that you have found some answers! Maybe not what you wanted but probably what you needed to not feel crazy. I think I might do what Lori said and see a ped psych just b/c they may be able to give you some pointers to help with his tendencies…. Doesn’t OCD run in your family??? I can’t remember but something makes me think it does. I would also do what Ann Marie said and contact the school board ASAP since really you only have this year for him to be in preschool and get “used to” it since he will be 5 in Dec that would mean he would start school in August 2010??? Have you thought about sending Landen to preschool as well so that Kaden doesn’t feel “singled out”? Just a thought. Good Luck and always know that I am here if you need an ear to vent into!!

[Anonymous]

Wow, so much to think about! How great to have some answers! I know two people with aspergers and both of them were not diagnosed until after the age of 8. I didn’t think much about it, but after reading your post and others it makes sense to hold off on the “label” for a while longer. I hope that you can continue to find the best information to help Kaden. I agree to PUSH for an IEP for him. Don’t stop fighting! I also like the idea of having Landen start school “with” him.

[Anonymous]

Hi, Jill. Unforntunately when it comes to PDD, they don’t want to diagnose early on in order to avoid overdiagnosis (like you mentioned) b/c it’s such a wide spectrum and almost every kid can fall under it. I agree with everyone, continue pushing for an IEP. It’s very important he starts getting therapy as soon as possible. The more effectively he expresses his wants/needs, the less chances there are for behavioral problems. Good luck and keep us posted.

[Anonymous]

Isaac is on an IEP in special preschool and I really think if you push enough it will happen. For a long time when he was in early intervention the therapists would tell me that Isaac was not really delayed and that he would never qualify for an IEP. I did not listen to them and got him tested. He qualified on multiple parts and got into to special preschool. I have seen dramatic changes in him since starting school. He had a severe speech delay in the beginning and now it is a slight delay. Socially he never looked anyone in the eye and wouldn’t play with other kids…this was seen as possible austism. Now he looks people in the eye and plays with other kids all of the time. He has always had feeding issues and they actually seem to have improved since being in school. We are still waiting to see a dev. ped. but I think that going to school on an IEP has worked miracles in him.

[Anonymous]

Thanks ladies…and thanks for all of the advice. At first I was a little upset at how they hold back diagnoses until they told me the treatments would be the same, so now we aren’t pursuing anything else. I just want help for him. I think what they said he has is pretty dead on, for now anyway and I can see him improving with help.

Ann Marie- is calling the school board any different than calling the County to set up an eval with them? I did that soon after I got the results of the KKI eval. We have an appt. on the 9th. I thought they would just use KKI’s paperwork, but no, they want to eval him too. Fine with me as long as they arent looking for excuses NOT to help, b/c in the end my son is suffering. He is 4 yrs, 3 months and the gap is widening in his social skills & speech delays and the rituals are completely insane.

I need them to understand I’m not just trying to get him in their preschool “program” b/c if that were the case I would have taken his long list of diagnoses last year and tried to get him in, but since I was home, I continued keeping him w/me. I just don’t want him going without an IEP, it’s is scary for DH and I as parents to send him without one for many reasons and a lot of it is safety.

Beth, Kaden will start Kindergarten in Aug 2010, but he will actually be 6. He will turn 5 years old Dec 20, 09 and will have missed the cutoff to start kindergarten in Aug. 09…thank goodness b/c he isn’t nearly ready.

Lori, we were referred to a local children’s behavioral therapist at a mental health facility. I think it’s a child psychologist, I am waiting for them to call and confirm our first appt. I wonder if that will be similar?

[Anonymous]

I think the county is different. Our state only provides services to the children from Birth to three years old, and then our local town/district school system is responsible for meeting the needs of children from 3 until they graduate (or even until 21 I think???) but so when they both turned 3 our birth to three therapists automatically referred them to the school system and they also did their own evaluations and qualified the children for the program. If they qualify, they automatically get the IEP. I think it has it’s good and bad points, but I do feel extremely safe as the ratios for us are like 1 teacher or para, or specialist to every 2 to 3 children. there is always the head teacher in the preschool room, and then there are several para professionals and then some kids have 1 on 1 aids that are just for them. In addition, there is usually in our classrooms for the special ed preschool, at least one of the therapists at all times, (pt, ot, speech, etc…) Because ours is in the actual elementary school, the children also get to participate in specials like art, music, gym, library time, etc….

For us we have really overall a good experience, even though we have had to fight for some services (more speech, etc..) but overall very happy with the peer interaction and the boys’ progress.

I would call the local elementary school or superintendent’s office and ask to speak with the special ed coordinator or director of pupil services, or ask the secretary who you should speak with about getting your child into the special ed preschool program…..

[Anonymous]

Jill here is a link I found about Just the facts re IEP… I just skimmed it, but it might give you some tips to help with getting Kaden set up. I hope it helps.

http://www.cobida.org/pdf/IEPs.pdf

[Anonymous]

Jill,

so glad you are getting some anwers. I pray your insurance covers the treament Kaden needs soon. Big hugs.

[Anonymous]

i think that you need to call your school districts central office and they should be able to give you the info on their developmental preschool. our district does testing in the spring.

[hellbennt]

so glad you’re getting answers!

I’m in the school system & I say FIGHT!

here you can get an IEP based on the ‘general’ diagnosis ‘developmentally delayed’ and that is good until age 6, after then they need a more ‘definitive’ diagnosis (like Specific Learning Disabled, Autistic, etc)…

also, if you need to, push the IEP from a MEDICAL standpoint-

here it’s called OHI= Otherwise Health Impaired

so some kids can get an IEP based on a neurologist’s report that states VERY SPECIFIC things the child needs

so if you have a report from the developmental ped, see if at the end there is a list of very specific recommendations & use this to PUSH

go to the TOP! here, the top is the Director of Special Education at the District Office…

the sqeaky wheel gets the grease, LOL!

[Anonymous]

Dylan is OHI, (Laura, watch out! I forgot that you were a school counseler, so I am using you as a resource now that I have 2 with IEPs! UGH)

and that is true, the squeaky wheel gets the attention, and I’ll bet you guys can’t imagine ME as a squeaky wheel !

[Author]

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