I need to vent to people that will understand(LONG)

[bcarson]

I guess I will start from the beginning my ds was born with water on his brain. It was communicating hydrocephulus to be exact. Not a birth defect but probably caused during birth. He took medication never had to have a shunt. When he was 4 they discharged him with a clean bill of health and said you won't notice any delays by the time he is five.

Well he is now 7 and we are still struggling. He has speech since he was 15months old. He started the preschool program at 3 with the school district. His b-day is Aug 20 which is a nightmare. Because when it came time for Kdg he made the cutt off so they would not let him stay another year in pre-k and there was no young 5's or anything. I could have sent him to private school but he would have still had to go to the public school for therapy several times a week. So fastfoward to now. He is repeating 1st this year. We hoped that the issues he was having was just immaturity and him just needing to catch up. We had him evaluated for ADD (he is not hyper at all) the doctor would have put him on meds right away. But it didn't really seem like anyone could agree that he had ADD. So I thought repeating was a better option.

It is already a month of school and ds still talks about his old friends, looks for his old friends and frequently asks when can he go to second grade. He always was a social child who made friends easily. He has this ability to charm other kids. Especially the girls. He will be a heartbreaker. He is not even trying to make friends. He acts annoyed when these kids try to talk to him after school. When he sees his old friends he tells me he feels angry and jealous. He does not eat lunch with them or have recess with the old gang except on occasion. Well I guess last week on one of these occasions. Some of the boys asked him why he did not go to second. He told them my mom won't let me. The boy told ds he should hit and kick his mom. Ds told him he could never do that. That made me feel good but made me feel bad that he felt like I did this to him.

As far as academics. He can do the work. He is top 5 in reading this year but his teacher said he will soon be left behind if he can't focus. He such the opposite around adults as he is with dk's. He is shy, has no self confidence and scared to get in trouble. He has always done everything slow. He has one speed. He is not a discipline problem. It's almost like you see him trying to process what steps he needs to do to obtain the goal but he either fumbles or does it slowly. (If that makes sense)Like soccer for example this was his 4th season. Last year he had a coach that was real involved and yelled out on the field what they needed to do. This years coach is less hands on and my ds acts lost! He is finally doing better at the end of the season. But he would say he just didn't know how to get around those other kids?? He has also made comments that sometimes his brain just doesn't work. I will say these problems are not as prounced at home or maybe we are just desentized to it and used to waiting on him or repeating ourselves.

I guess at this point I am going to take him back to the doctor and try some meds. Or any other tests they want to try. The school thinks it would be a waste to test him for further learning disabilities. He knows to much and would pass. I feel like that there is something wrong that they have not pinpointed yet. I have a nephew 4 who is autistic and I always worry. Dh is tired of hearing about it. He thinks I am making a big deal out of nothing and he will be fine. He was the same way and look at him he went to college. He also likes to frequently remind me that he was against holding him back and told me it would be traumatic. He was held back and hated it. I still think this was the best thing. If you got this far thanks for just letting me vent. Any advice or suggestions would be great.

 

[Jacksmom99]

I'm a special education teacher, and work with HS students, but I hope I can help a little. You said your son received early intervention services, and therapies in school. Can I assume he has a current IEP? When was his last evaluation for school? Have they identified any specific disabilities? You said that the doctor ruled out ADD because he wasn't hyper. ADD doesn't always present with hyperactivity, it's really an inability to manage his attention. Does that make sense? For example, kids with ADD can absolutely focus on things that really interest them (video games) but can't maintain their attention on tasks in school, or have difficulty planning steps in a process. When you saif the school thinks its a waste to test him, were they talking about academic tests or psychological tests? It sounds to me that your son could benefit from psychological tests that would assess his processing speeds, his executive functioning, his verbal ability vs non-verbal, ect. Even if the school thinks it would be a waste to do further testing, you can demand it.

As far as repeating 1st grade, that's such a tough call. It's too bad that your district would not allow you to keep him out of kindergarten until he turned 6. I strongly feel that "most" boys with summer b-days should be kept out of kindergarten until they turn 6.

Please let me know if I can answer anymore questions for you. I don't know if I can help, but I will listen.

 

[bcarson]

Yes he does have an IEP for speech. Last year they tested him for phonemic awareness after I insisted and found out he does have difficulties. They added more speech time. He gets I believe like 90 minutes a week. I know it is three x's a week. He is actually top 5 in reading with this class. But his teacher says they could leave him behind if he doesn't start "paying attention". The doctor did not rule out ADD in fact he would have medicated him. But honestly it scared me that all we had to do was fill out a paper and the school and they would medicate him. It just didn't seem to definate to me that he had it. The teachers son even has add and she could not definately pin point it in him. That is why we thought holding him back would rule out him being just immature. I was googling this morning and found APD (aduitory processing disorder) . It sounds just like my son. Except for the behavior problems he is a good boy. I am going to keep talking to the school, see the doctor and get his eyes checked. I have a call in to the a friend that is a school social worker and I am going to ask her if our schools have a psychologist that can do the tests you mentioned. We will see I am not willing just to let my son be pushed aside. Thank you very much.

 

[mlwear]

I'm a little confused. Why did they make him repeat a grade? My son (autistic) repeated K. The school recommended it, but it was our choice. It was the best thing for him. He, however, really didn't seem to notice that the kids from his other class had moved on. We made sure he had a new teacher for reg. ed.
I would be concerned about this situation, too. I don't have too much info., though. Could your child be losing focus in the class because he is bored, that the material is too easy for him? My older son has some special needs but also has a gifted IQ. Once the first grade teacher was made aware (by way of our paid psychological tests) that he wasn't just not paying attention, he already understood and was ready to move on. He didn't need to hear it over and over again, things got better. There is a real danger for kids who are bored by school work that is too easy. They stop paying attention because they already know it and not paying attention becomes the way they go through school. Then, they reach a point when something is being taught that they don't know and guess what...they aren't paying attention. Then, they get behind.
If your son's IEP is only for speech services then maybe you need to make a referral for a child study. What will happen is that the team will meet to determine if there is a need to test for eligibility of additional special ed. services. This will get you on the right track, I think. The team will have to state what the problem is and whether or not they believe there is a possible need for services. Then they do testing. (I'm sure you went through this with speech). I would do some research on specific educational tests that you want performed. After testing, you meet again to discuss results and if he needs more services. This may be when it is shown that he has or doesn't have attention difficulties. Why is he repeating a grade and is a top reader?
Of course, this is all my humble opinion based on limited info.
Your gut is telling you something is wrong. Trust it.
Feel free to PM me.

 

[bcarson]

He repeated because he was struggling with the work last year. He is top 5 this year only because he has gone through the stuff already. He probably is bored some but he is understanding the work better to. He was the youngest in his old class also and somewhat immature. He would not raise his hand and ask for help and he hated speaking out loud. The teacher said he already seems to be comprehending more lessons. Its more the following directions and processing what he needs to do. He is still struggling with listening. Another example, the teacher showed me a paper that was marked off in squares and the had to write there name in one square. Everyone did it right but my son. He got the math right but he doesn't get the details right. He also spaces out a lot. Its almost like you see the light come on in his head when you repeated to him several times. Its like a delayed reaction. Honestly some people just are not that patient with him. I have to admit I have been there myself. It can be frustrating. But I am determined to try and find an answer. Some of it could just be is personality. But I think its more of a processing issue. Who knows what that water pressing on his brain could have done to him. I don't think they knew what they were talking about at the time when they said he would be completely fine.

 

[MarieS]

Who knows what that water pressing on his brain could have done to him. I don't think they knew what they were talking about at the time when they said he would be completely fine.


I have two sons with hydrocephalus. It's not the same as your son's situation ( theirs is obstructive and they have shunts), however it's fairly common for kids with hydrocepalus to have learning problems. I belong to the Hydrocephalus Association and they have a variety of pamphlets about learning and other problems. Anyway, eye problems are also common so I think you're doing the right thing to rule that out. Also, you mentioned checking the possibility of a processing disorder. The same thought came to my mind when I read your post. Like another poster said, you might want to see if your school has a child study team. It might be a place to start. You can request that the school psychologist observe your son on several occasions. The teacher can also do observations. Sometimes, a behavior therapist is included ( along with speech, etc). After they have made their observations, they meet and discuss the findings and share this with you. I have known a couple parents who gave their kids a trial of ADD medication. For one, there was a big improvement in focusing and attention span. And I know he is still on it. For the other child, his mom didn't think it helped much and they stopped. It's a tough decision. Good luck and keep us posted!

 

[lewdyan1]

Keep pushing to get him tested. Since he already has an IEP written, I would recall the team, to request this.

Both of my children are gifted/learning disabled. They are super smart, but both have processing disorders. My son also has adhd. He is medicated with what he calls his 'focus medicine'. He is older,10, but he already knows the difference of how he performs with and without his meds. The testing will probably clear up a lot of your questions.

 

[minkydog]

I would push for having him tested again. You need to know whether this is an attention problem or an auditory processing problem. They are treated differently. Don't rule out the possibility of using medicaiton, however. For some kids it makes a world of difference

 

[itsagloomyday]

I would definitely request (in writing) for him to be retested at school. If they refuse or say they can't do the proper testing, have them respond in writing as to why. Then you have the option of independent testing (which you can do no matter what the school does).

You might consider having him tested by a neuropsychologist. They can test I.Q., evaluate learning styles, the potential that your child has ADD, processing problems, and also define areas of strength. It sounds like a comprehensive evaluation could get to the bottom of whether the problem is something that needs further intervention.

Good luck! Keep us updated.

 

[SueM in MN]

I agree with the others that it sounds like your son needs a complete evaluation. If all he is being looked at for is speech, they may be missing something.

Also, here's a little explanation from a workshop that I went to once about ADD and processing disorders.
Imagine you are listening to the radio. The station is strong and there is no static. You can hear it well and you can understand everything. Sometimes, things come on that you are more interested in and you pay more attention to those things, but you are capable of paying attention when you want. This is what it's like for someone with no disabilities.

Imagine you are listening to the radio. The station is strong, but occasionally there is a bit of static so you miss some words. In addition, occasionally the announcer throws in a word in a foreign language (or at least it sounds like a foreign language). If you concentrate, you can pick out most of the content. Someone with a processing disorder might have an experience like this.

Imagine you are listening to the radio. The station keeps cutting out with static and other stations (sometimes equally strong as the one you are trying to listen to) keep cutting in. Sometimes, you are can hear one station clearly, sometime another station is clearer. Often, you can hear 2 or even 3 stations at the same time (the one you want plus others). It's tiring to be concentrating on that one station all the time. Sometimes, you get tired and just "tune out" everything. That's what ADD is like.

Now, add to that - there is a program (or a big game) that you are really interested in listening to. When that happens, it's much easier to "tune out" those other stations and "hear" the program you want. You may not even be aware of those other "stations". That's what happens when someone with ADD has a subject they are really interested in. Sometimes the subject they are interested in isn't the subject they are "supposed" to be paying attention to at the time (and sometimes the other "stations" include things that parents or teacher are saying).

 

[SueOKW]

Just want to add my best wishes and I hope you get some assistance!