View Full Version : We are really struggling.


Desertmariposa
09-06-13, 11:12 AM
I've been reading the forum for about a month, but this is my first post.

I have a 5 yr 9 month old DS who we are in the process of getting him help/diagnosis. Right now he's being treated by his regular pedi since it takes 2ish months to get in with a behavioral pediatrician or neurologist.

We've mentioned many issues throughout the years to our pediatrician, but most have been ignored since they don't like to diagnose these things until the kids are older. In July we finally went to her again because of his anger and lack of focus. I was getting more and more nervous about kindergarten starting knowing we were going to have issues. So our pediatrician put him on Kapvay for the anger and it's worked. He doesn't have the rage episodes. We've also tried Focalin (many different doses) and Vyvanse. So far neither have worked. Both have made him extremely emotional and IMO made him harder to deal with because he gets fixated on something and just starts crying.

Kindergarten started last week. It is not going well at all. I want to pull him out and homeschool, but my husband wants to keep going and hope we can get the right medication to help him. I'm just not so sure.
Like I said we don't have an official diagnosis and he could very well get a DX of Autism (the school seems to think he's autistic) as well as ADHD and ODD so right now we're just trying to keep our heads above water with the school.

I've been called to the school twice to take him home. Yesterday he made it 2 1/2 hours before they had me go get him. He starts yelling, completely shuts down and nobody can get through to him. He's completely isolated, none of the other children will play with him or even seem to talk to him. He sits alone at lunch.

We had a conference on Friday (so day 5 of kindergarten) with quite a few of the staff members (his K teacher, principal, vice principal, school counselor, special ed coordinator, PE coach). The conference was requested by his teacher after the first day of school (this was so disappointing to me-- felt like they didn't even give him a chance to adjust). The school counselor said that at lunch he sits alone because the other kids said they don't want to sit with him. We signed all the papers to get him evaluated through the school, but that takes him and until then he is stuck in a regular kindergarten class.

I'm just really having a hard time believing this is the best place for him. There aren't any other school options. We have no private schools in the area that offer any special ed services. I actually think he's a bright child, but getting through to him is hard enough at home. At school he is not getting anything except grief from everyone.

someothertime
09-06-13, 11:44 AM
You really gotta try connect with other parents / support people locally who can advise and support you!!!

Keep following through with the professionals and get some support mum! ( As a side note, maybe there is another pediatric psych w ASD experience nearby? )

Given the strains, I think another year at home might be in everyones best interests, long term. Try not to think of it as backing down or in a reaction to the school experience.

Have you looked into what sort of support / peer networking groups / people are local? Have you heard of Steiner? schools?

ccom5100
09-06-13, 01:23 PM
I think it would be a good idea to homeschool him, at least for this year, until you can get a diagnosis and proper treatment. Homeschooling kindergarten can be a lot of fun. Since he is being ignored by the other children in school, it's not as if he will be missing out on socialization. You might be able to find a homeschool group in your area. When I homeschooled my grandson, we met with a group weekly for an afternoon in the park. Our City's Park & Rec Department also offers a homeschool PE class twice a week and a Homeschool swimming team. Both were very inexpensive. You can take him on field trips to the zoo, aquarium, etc. For curriculum ideas, check out Oak Meadow; they have a wonderful Kindergarten curriculum that fosters a love of nature and a love of literature and is perfect for special needs children.

sarahsweets
09-06-13, 03:01 PM
Look up wrightslaw. it tells you EXACTLY how to approach the district so your son can get a fair education.

Desertmariposa
09-09-13, 03:18 PM
Thank you for your responses. I really do feel a strong urge to keep him home this year. My husband doesn't feel the same way **yet**.
Today (Monday) we made it until 12:30pm before they called me to send DS home.

Can anyone share their experiences? Is that how most schools handle children with behavioral issues? They just keep sending them home when things aren't going well? I don't know if I have the full story about today, but from what the principal told me he wasn't even in class today when he got upset. He was out with the special ed. diagnostician (they've started the evaluation process) and he started getting really upset. The principal was able to calm him down and then she had them call me to send him home. Is this how it goes for kids/parents like us?

dvdnvwls
09-09-13, 03:40 PM
Thank you for your responses. I really do feel a strong urge to keep him home this year. My husband doesn't feel the same way **yet**.
Today (Monday) we made it until 12:30pm before they called me to send DS home.

Can anyone share their experiences? Is that how most schools handle children with behavioral issues? They just keep sending them home when things aren't going well? I don't know if I have the full story about today, but from what the principal told me he wasn't even in class today when he got upset. He was out with the special ed. diagnostician (they've started the evaluation process) and he started getting really upset. The principal was able to calm him down and then she had them call me to send him home. Is this how it goes for kids/parents like us?
Really, read the wrightslaw site. It tells you all of this.

Desertmariposa
09-09-13, 03:59 PM
Really, read the wrightslaw site. It tells you all of this.

I've looked through it. I've seen articles on being suspended/expelled, but nothing about sending a kid home for the day when they are behaving badly.

Dizfriz
09-09-13, 04:50 PM
I think it would be a good idea to homeschool him, at least for this year, until you can get a diagnosis and proper treatment. Homeschooling kindergarten can be a lot of fun. Since he is being ignored by the other children in school, it's not as if he will be missing out on socialization. You might be able to find a homeschool group in your area. When I homeschooled my grandson, we met with a group weekly for an afternoon in the park. Our City's Park & Rec Department also offers a homeschool PE class twice a week and a Homeschool swimming team. Both were very inexpensive. You can take him on field trips to the zoo, aquarium, etc. For curriculum ideas, check out Oak Meadow; they have a wonderful Kindergarten curriculum that fosters a love of nature and a love of literature and is perfect for special needs children.
Very good ideas. Do keep in mind that not everybody lives in a urban area. Rural areas very often simply do not have these kinds of resources. The poster shows living in West Texas and believe me, many of these areas have very little in the area of parks, zoos, aquariums and such.

I live in rural East Texas and it is is more populated and resource rich than much of West Texas and we have none of these kinds of resources nearby except for some (but not a lot) open land city parks.

I lived in the Rio Grande area at one time and there, the nearest friend of a child might be 20 miles away. We are talking about an area where you can drive for 70 miles and not see a house. They are there but often several miles off the highway on a ranch.

So when we are talking about resources, it might be helpful to keep in mind that these wonderful things are not available to all. It can be a factor in making the decision to home school.

Dizfriz

dvdnvwls
09-09-13, 04:58 PM
I've looked through it. I've seen articles on being suspended/expelled, but nothing about sending a kid home for the day when they are behaving badly.
Sorry then, I must have remembered it wrong.

Ms. Mango
09-09-13, 05:14 PM
Look for information about a functional behavioral assessment and response to intervention. A functional behavioral assessment should be part of the overall assessment the school is currently conducting.

The school needs to find a way to keep your son there--either in the classroom or in some other type of learning environment. Is there anyone you can talk to (like in the special ed department) who can work with the teachers and principal to help them so that their first response isn't to call you?

Desertmariposa
09-09-13, 05:53 PM
Look for information about a functional behavioral assessment and response to intervention. A functional behavioral assessment should be part of the overall assessment the school is currently conducting.

The school needs to find a way to keep your son there--either in the classroom or in some other type of learning environment. Is there anyone you can talk to (like in the special ed department) who can work with the teachers and principal to help them so that their first response isn't to call you?

Thank you, that helps. I'm going to print the stuff on functional behavioral assessment because it definitely seems to apply here.

The special ed diagnostician (she's the one that seems to run the special ed department) was the one with him today when we had his outburst. They were able to calm him down and the principal still had her secretary call me to pick him up. He's been there 9 days and he's been sent home 2 of those days.

Desertmariposa
09-09-13, 05:58 PM
Very good ideas. Do keep in mind that not everybody lives in a urban area. Rural areas very often simply do not have these kinds of resources. The poster shows living in West Texas and believe me, many of these areas have very little in the area of parks, zoos, aquariums and such.

I live in rural East Texas and it is is more populated and resource rich than much of West Texas and we have none of these kinds of resources nearby except for some (but not a lot) open land city parks.

I lived in the Rio Grande area at one time and there, the nearest friend of a child might be 20 miles away. We are talking about an area where you can drive for 70 miles and not see a house. They are there but often several miles off the highway on a ranch.

So when we are talking about resources, it might be helpful to keep in mind that these wonderful things are not available to all. It can be a factor in making the decision to home school.

Dizfriz

We are in the biggest city in western Texas (border of Texas, NM, and Mexico), but even so we have limited resources. There is a large homeschooling group here so if we do homeschool there is a network of people that I should be able to connect with.

anonymouslyadd
09-09-13, 06:27 PM
I'm not a parent, but I empathize with your situation and especially your young son. I was probably thought of as a terror to my teachers but was fortunate to play sports and make friends.

Some of my social struggles didn't come till later.

I just hope that what's happening to him now doesn't last for too much longer. The scars of childhood last into the adult years. I'm proof of that.

Desertmariposa
09-10-13, 07:13 PM
And now he was suspended for 3 days. He threw a book today that hit another child. :(

zette93
09-11-13, 05:51 AM
Can anyone share their experiences? Is that how most schools handle children with behavioral issues? They just keep sending them home when things aren't going well?

Unfortunately, yes, many schools do this. Once he has an IEP, though, they can't suspend him for more than 10 days total in a school year, and if they keep calling you to take him home you can build a case for a 1:1 aide.

My son was suspended twice in first grade, for a total of 4 days. I think it's ridiculous to suspend someone so young, but that's what they did.

A friend of mine also has a son with Aspergers and severe behavioral issues, and his principal unilaterally placed him on half-days in first grade (the school had previously denied him an IEP because he was "too smart".)

someothertime
09-11-13, 05:54 AM
I think it's ridiculous to suspend someone so young

Agreed

slave2thekids
09-11-13, 07:23 AM
Your story sounds a lot like ours. My son did kindie and half of year 1 without medication and it was awful for him. He also got suspended, though I think that was ridiculous of the school (trying to force him to do a 3 legged race - why would you force something like that?). Once he started taking straterra things got a lot better from a learning point of view. I also switched schools and repeated year one. Lately (the last 3 months) he's been having more out bursts and has been running away from the school. We've had a few days where they've called me because he was so upset that he couldn't cope with school. So, it's not about punishing him, it's an assessment that that is the only thing that will calm him. They have also kept him all day when he hasn't settled and hasn't been able to attend class but I've reached teh end of my rope and need a break from him. We recently added anti-anxiety meds and it has made so much difference. He's willing to try more and even joins in the odd game, we'll try school work more willingly, etc. So much happier. Our school has a teacher's aide that is with him all of the time and helps him out.

If your son is like mine then they should forget about testing him because that will set him off everytime. They need to find another way to assess him (Connors test?). You also need to let your ped know that you're in crisis and that you're son has been suspended and is being regularily sent home and that you need to get into see a specialist now. They can usually get you in a lot quicker than 2 months if you keep calling and let them know how urgent it is.

It's not easy is it. It's heart breaking and really they are still so young.

Desertmariposa
09-11-13, 10:44 AM
Agreed
I agree. It's a really sad system IMO. They know he needs some accommodations, but since we have to complete their process he isn't entitled to any of that yet. In the meantime he's acting out, getting sent home, getting suspended in the third week of kindergarten.

someothertime
09-11-13, 10:54 AM
At the ground level this situation is awfully blunt, and antagonising for all involved.

Try to be Brockavich on this one Mum. Sleuth out the rules, file the concessions, play the system. Don't forget to step back and take time for yourself too. You gotta keep your pistons firing for those stubborn rulestigators ;)

The less stress that he has to go through the better. How is he doing at home since all of this began? Has there been any positive outcomes from the schooling?

Acting out? It's great he's helping but that's an odd choice of words.....grrrrr...

Desertmariposa
09-11-13, 10:54 AM
Your story sounds a lot like ours. My son did kindie and half of year 1 without medication and it was awful for him. He also got suspended, though I think that was ridiculous of the school (trying to force him to do a 3 legged race - why would you force something like that?). Once he started taking straterra things got a lot better from a learning point of view. I also switched schools and repeated year one. Lately (the last 3 months) he's been having more out bursts and has been running away from the school. We've had a few days where they've called me because he was so upset that he couldn't cope with school. So, it's not about punishing him, it's an assessment that that is the only thing that will calm him. They have also kept him all day when he hasn't settled and hasn't been able to attend class but I've reached teh end of my rope and need a break from him. We recently added anti-anxiety meds and it has made so much difference. He's willing to try more and even joins in the odd game, we'll try school work more willingly, etc. So much happier. Our school has a teacher's aide that is with him all of the time and helps him out.

If your son is like mine then they should forget about testing him because that will set him off everytime. They need to find another way to assess him (Connors test?). You also need to let your ped know that you're in crisis and that you're son has been suspended and is being regularily sent home and that you need to get into see a specialist now. They can usually get you in a lot quicker than 2 months if you keep calling and let them know how urgent it is.

It's not easy is it. It's heart breaking and really they are still so young.

Our pedi actually did speak with the behavioral pediatrician asking if we could be seen sooner and she was told there wasn't any openings. I think she's either the only one in town or there might be one on the other side of town and her office hours are very limited (Mon-Thur 9am-2:30pm, closed Fridays) so really it's no wonder she has no openings. Our appointment is this afternoon though. Our neurologist appt is Friday so hopefully between the two we can get some help. For now he's home with me and his 3 yr old sister and we'll work on school stuff here.

The vice principal kept my son at school all day yesterday even though he barely spent any time in class. He spent most of the day with their lit coach and she worked one on one with him. The vice principal said they will do their best to keep him even if he's not in class, but they can't always do that if he's acting out. I hope that means they really do want to help, but sometimes it's hard to know for sure. A lot of the staff seems really wonderful, unfortunately his teacher seems the least accommodating. To me it feels like she gave up on him after day 1.

Desertmariposa
09-11-13, 10:59 AM
At the ground level this situation is awfully blunt, and antagonising for all involved.

Try to be Brockavich on this one Mum. Sleuth out the rules, file the concessions, play the system. Don't forget to step back and take time for yourself too. You gotta keep your pistons firing for those stubborn rulestigators ;)

The less stress that he has to go through the better. How is he doing at home since all of this began? Has there been any positive outcomes from the schooling?

At home he's been fine. He doesn't throw things, or hit people. He's a wild kid, but he doesn't act out that way with us at all. He had rage issue before we started the Kapvay, but since then we have not had one episode of rage from him. I don't think anything positive has come from school so far. I'm disappointed because we're falling behind and I have very little time to even work with him. Before school we were making such progress with sight words, letter sounds, writing, but now his days are so miserable that working on that stuff at night is a struggle to say the least.

ccom5100
09-11-13, 11:18 AM
At home he's been fine. He doesn't throw things, or hit people. He's a wild kid, but he doesn't act out that way with us at all. He had rage issue before we started the Kapvay, but since then we have not had one episode of rage from him. I don't think anything positive has come from school so far. I'm disappointed because we're falling behind and I have very little time to even work with him. Before school we were making such progress with sight words, letter sounds, writing, but now his days are so miserable that working on that stuff at night is a struggle to say the least.

It really sounds as though he (and you) would be much happier homeschooling. JMHO

JenE
09-11-13, 11:57 AM
I'm so sorry you are going through this. Huge Hugs!!

Your situation sounds so much like mine. My DS spent lots of time in in-school suspension in Kindergarten and had awful 1st and 2nd grade experiences. He started ADHD and anxiety meds the summer between 1st and 2nd. In 3rd and 4th grade, he did AWESOME but I credit that to his AWESOME TEACHERS! They got him. They worked to understand him and help him deal with things. Then 5th grade and we had problems again. This year, 6th grade, we have put him in a private school and although we are still working with the anxiety, he loves the school--tons less students and a staff and administration that is willing to do whatever it takes for him to succeed. It's so refreshing.

It does sound like the class environment/teacher may not be working for him. Since he is good at home and acting out in school, it may be an anxiety response. I can't tell you how many times I had to argue with the school about the difference in anxiety and willful defiance. A full time aide may help both him and his teacher to relax a bit and improve the environment.

Please let us know how the dr appts go. Hugs!!

Desertmariposa
09-12-13, 09:27 AM
We had the appt with the behavioral pediatrician. It went well I think. We were there a long time and she was very thorough asking questions. In the end she diagnosed him adhd, but she also gave him an autism diagnosis. She feels strongly that he has receptive-expressive language disorder. I had him tested at 3 (by the school district) for speech and even though he spoke ok I felt that his understanding and articulation were behind. They said he wasn't delayed enough. I wish I would have known better and gone to private speech therapy. Shouldn't dwell on that though.

She is starting us a new med- Risperidone- to try and control his outbursts at school.

We have referrals to speech and OT.

I'm curious how this will change things at school. Will this change things immediately or do we still have to wait until they are completely done testing him? The doc gave us info for a nonprofit that can help us go through the process with the school and make sure we're getting the services he's entitled to. Maybe that will help.

sarahsweets
09-12-13, 11:47 AM
google wrightslaw, it tells you everything you need to know about making the school work for you not against you.


We had the appt with the behavioral pediatrician. It went well I think. We were there a long time and she was very thorough asking questions. In the end she diagnosed him adhd, but she also gave him an autism diagnosis. She feels strongly that he has receptive-expressive language disorder. I had him tested at 3 (by the school district) for speech and even though he spoke ok I felt that his understanding and articulation were behind. They said he wasn't delayed enough. I wish I would have known better and gone to private speech therapy. Shouldn't dwell on that though.

She is starting us a new med- Risperidone- to try and control his outbursts at school.

We have referrals to speech and OT.

I'm curious how this will change things at school. Will this change things immediately or do we still have to wait until they are completely done testing him? The doc gave us info for a nonprofit that can help us go through the process with the school and make sure we're getting the services he's entitled to. Maybe that will help.

ccom5100
09-12-13, 04:05 PM
The doc gave us info for a nonprofit that can help us go through the process with the school and make sure we're getting the services he's entitled to. Maybe that will help.

It's probably an advocacy group. I would definitely contact them. They will help you get the IEP process going and also attend the IEP meeting with you and advocate for services for your child. Good luck and keep us posted.

zette93
09-13-13, 10:07 AM
Get the book From Emotions to Advocacy by Peter Wright. It's the same author as the wrightslaw website, organized in a way that is much easier to follow than jumping around on the website.

With the school, you might want to request a Functional Behavioral Analysis if it was not specifically listed on the IEP evaluation plan.

ccom5100
09-13-13, 02:32 PM
With the school, you might want to request a Functional Behavioral Analysis if it was not specifically listed on the IEP evaluation plan.

Just know that even if you get a BIP (Behavior Intervention Plan), they can still suspend him. I found that when we had one in elementary school, it hurt more than helped. That's the main reason I took him out and homeschooled him. When he went back in middle school, I vacated his IEP & BIP and he was in trouble less because he was just another kid and they didn't have their radar pointed at him all the time.

Illumination
09-16-13, 12:53 AM
she also gave him an autism diagnosis.

She is starting us a new med- Risperidone- to try and control his outbursts at school.

We have referrals to speech and OT.

I'm curious how this will change things at school.

Hope the new meds work for him.

Now he has an autism diagnosis, may I suggest looking into the gluten-brain and A1 dairy-brain connection. I'm not a health freak, so we tried this as a last resort, and at 3 weeks in our son's anger/frustrations suddenly dramatically reduced; really noticeable. And it's maintained. And he now gets gut issues within hours if he consumes a tiny amount of gluten (ie cross-contamination); probably had it since birth but I didn't know. So I offer it as a suggestion. Message me if you'd like more info but there's heaps on the web. A2 dairy is fine.

OT can be totally amazing. Was great for our son, especially if the OT understands autism well.

Through your own proactive discussions with the school staff, the school does need to be on-side with whatever the OT and speech and support professionals recommend. If not, school will be a miserable experience. I found I needed to 'translate' or pass on what the professionals said and politely check it was being done in class throughout the year and this led to success.

I found it important to foster a really close relationship with my son from that point (it was already close, but turned more therapeutic driven), and teach him how to express himself in words, not through physicality - other people don't understand what those actions are trying to express - they need words to understand his feelings/views. Some kids find this really difficult, so all the help you can give him like words, phrases, and lots and lots of exact situational examples over time will help. Talking about how each day went and revisiting difficult parts and putting words to them was helpful to develop expressive skills. Don't expect him to know how to generalise across situations.

As far as his teacher is concerned, perhaps suggest (after you've tested it out at home to see if it works) that if he is showing the signs of frustration that in order to prevent it from escalating he will need one-on-one time to defuse it. She will need to be very patient initially and be fully attentive, and perhaps suggest words (or pictures) to help him frame his needs until he develops sufficient expressive skills. Over time he will get used to schoolroom routines and expectations.

Good luck and all the best.

Desertmariposa
09-17-13, 06:42 PM
Hope the new meds work for him.

Now he has an autism diagnosis, may I suggest looking into the gluten-brain and A1 dairy-brain connection. I'm not a health freak, so we tried this as a last resort, and at 3 weeks in our son's anger/frustrations suddenly dramatically reduced; really noticeable. And it's maintained. And he now gets gut issues within hours if he consumes a tiny amount of gluten (ie cross-contamination); probably had it since birth but I didn't know. So I offer it as a suggestion. Message me if you'd like more info but there's heaps on the web. A2 dairy is fine.

OT can be totally amazing. Was great for our son, especially if the OT understands autism well.

Through your own proactive discussions with the school staff, the school does need to be on-side with whatever the OT and speech and support professionals recommend. If not, school will be a miserable experience. I found I needed to 'translate' or pass on what the professionals said and politely check it was being done in class throughout the year and this led to success.

I found it important to foster a really close relationship with my son from that point (it was already close, but turned more therapeutic driven), and teach him how to express himself in words, not through physicality - other people don't understand what those actions are trying to express - they need words to understand his feelings/views. Some kids find this really difficult, so all the help you can give him like words, phrases, and lots and lots of exact situational examples over time will help. Talking about how each day went and revisiting difficult parts and putting words to them was helpful to develop expressive skills. Don't expect him to know how to generalise across situations.

As far as his teacher is concerned, perhaps suggest (after you've tested it out at home to see if it works) that if he is showing the signs of frustration that in order to prevent it from escalating he will need one-on-one time to defuse it. She will need to be very patient initially and be fully attentive, and perhaps suggest words (or pictures) to help him frame his needs until he develops sufficient expressive skills. Over time he will get used to schoolroom routines and expectations.

Good luck and all the best.
Thank you. I will look into the diet changes to see if that could help him.