At a loss, feel like crying - need help

Oh, Dana! My heart goes out to you.

I’m so sorry your son (and you) are going though this. How disappointing that he regressed.

I’m sure others will have better advice so hang in there. My question is how do you feel about your OT person? The reason I ask is that I have never heard anything good about brain gym. I’m so sorry to have to tell you that and I hope others can jump in with good things to say but if that is what your therapist offers, it may be time to find a new therapist. :(

There is hope at the end of the tunnel though. My oldest child had many problems and grades 2 - 6 were hell. I didn’t think he would graduate. Finally we tried a different doc and he took a completely different tack. The summer was great for him and school is going much better.

Again, I’m sorry I can not offer more but I’m sure others will be able too.

You are in my thoughts.
Barb

Barb,

What did your Dr. do different? What was your new track?
I like our therapist - young with lots of energy but the hospital she is working in is a small, local hospital not wanted to put out money for different types of therapy. I am currently looking into other therapy centers around here to see what they have to offer.
We are going to a new Dr Monday - switching from our family Dr to a ped. We usually go into Pgh. to Children’s for all evaluations and specialist appts.

Dana

Dana,

Do they have a school around you for children with exceptional needs? If they do then I think it is time to get him transferred there so he can be with therapists/teachers/and students who are more on his level and can help him with the challenges he faces in life.

I worked at a school based center for children with exceptional needs, it was loaded with therapies that one couldn’t get at any other school throughout the distirct. Many of the kids there have severe challenges, some had epilepsy, others orthopedic impairments and they like but the kids were all mkaing growth and they felt good to be around other children who faced similar challenges themselves.

Patti,

We have a special education school a few miles away. Is that what you are talking about? I can’t put him in there, he has a normal IQ, he is not retarded not even mildly retarded. I am a substutite classroom asst. there and I know those kids are all MR/MH. My son has a normal IQ with significant LD - why would I put him in a school where half the kids are non-verbal?

Or am I just begin an unrealistic parent not wanting to face reality?Currentluy, he is in a learning support classroom mainstreamed in our local public school.

Dana

Hi, Dana.

I think you are on the right track moving him to a ped rather than the family doc. And I’m afraid that’s what I heard about Brain Gym—it a cheap program easy to use (ie no cost for training). Unfortunately, it hasn’t been proven to do any good.

To break netiquette, please consider reposting on the schwablearning.org message board. There are a lot of parents over there with very special children. And it’s a great group of ladies, very supportive. It is a bit quieter on the weekends but I’d give it a go.

To answer your question on my older child, the teachers insisted he had ADHD and needed meds. Two professionals insisted it wasn’t ADHD but had no idea what it was. He wasn’t learning anything and spent most of his time on suspension. Finally he was referred to this specialist who dx’ed GAD (General Anxiety Disorder), Post traumatic stress syndrome, and OCD (Obsessive Compulsive). We decided to put him on meds for the GAD and OCD and it has been the best thing. He is 12 and can tell us how much better he feels plus we can see the difference. I realize my situation is very different than yours but the feeling of helplessness and hopelessness is the same. Again, it took us a long time to get the right things in place; don’t give up!

Regarding a special school—do you have an advocate helping you? S/he would be able to explain your options. The home school will, usually, only tell you about the cheapest option. Just to let you know, in my area we have a school for MR and a different one for behavioral issues kids. And I just found out about a LD/gifted one about 40 miles from here. If my younger LD child doesn’t progress this year in school, we will push to have him moved to this school. The school district conveniently forgot to mention this last school….

Take care and I hope to see you at schwablearning!

Hi Danap,

I just want to offer a word of encouragement to you from someone who truly knows how you feel. My son is almost 8 and everything is still not in place, but there’s been improvement since age 6. You are asking the right questions and making the right moves. Hang in there!

I just thought of something!

Dana, you may be working in a school district where the special needs students are, for lack of a better word, simply warehoused. The schools, for whatever reason, can not teach children outside the box. Therefore when faced with one they ship them away and dumb down the regular material. If so, I can understand the reluctant to consider a special school.

The schools the rest of us are talking about are not like that at all! Appropriate grade level material is taught by multi-sensory methods, usually in small classes to make sure each child “gets it.” An individual plan is developed so that each child’s underlying weak areas are addressed and developed to the fullest extent possible. Some of us find these schools with in the district and other have to go outside to private schools. If the school district truly can not teach your child, for any reason—often lack of specially trained teachers—they must pay for the private school. (Although to be honest, that’s a tough one to pull off.)

Take care,
Barb

Barb,

Thanks for the extra thought! I think you are right. The school is trying …..to a certain extent but not out of there comfort zone - they will not shake things up to accomodate my son. There normal schedule for LD students is morning session in learning support class room and in the afternoon everyone goes back to the regular classroom. My son will never be able to hang in the regular classroom. When I asked my neighbor, who is a teacher at my son’s school, what they do with the kids that can’t keep up, she said “oh everyone helps them, all the kids will help” I can’t see my son getting a good education when another 6 year old is ‘helping’ him get his work done.
I am sick over this! I went to the web site you suggested and ran a search for schools in PA and came up with NOTHING close to us. We have a charter school but for grades 6 thru 12 and nothing other than our public school.
I will have to call and talk to the Principle of the special education school to see what he and his school can do for my son. But when I work there I don’t see any intense training or therapy going on - they look like they are there to babysit while mom and dad get a break.

Dana

No child left behind my foot, huh? I know of LOTS of children the system is leaving behind. It makes me so mad. It should not be this hard!

You are making a ton of right choices here. You are giving your child the best you can find. You need to take pride in that.

This is a very hard case. Have you tried an advocate from your states PTI (or whatevery they are called?). In theory, they would have the most up to date data available and are trained to work for you under the supervision of the US Dept of Ed. In practice, the quality vaires A LOT from state to state. Here in MN they are pretty good and don’t cost the parent a cent. Someone told me the ones in FL are to overworked to even return most phone calls.

Anyway, the link to that is

http://www.schwablearning.org/state_level_services.asp?st=PA

Unless I’ve messed the state up again… :wink: I think the PTIs are listed second to the bottom.

It is possible to get funding, partial or full, for placement at a private LD school. In my area there is a special school where 98% of the kids get full funding from the state, and the school my son is at has many kids with some funding relief. Both of these schools are for children with at least an average IQ, and many are highter.

I also spoke with an attorney (education) that said there are some tax write offs for private tuition, but I’m not educated enough on this to tell you any more other than there are ways to get it paid for.

I just picked my son’s carpool this afternoon and listened to these 3 bright kids discuss how dyslexic they are. It was really beautiful to hear them discuss their LD in such a normal way. I think the benefit of being in an environment where you actually get what you need is tremendous if you can find a way to do it.

Good luck !!!!!

Hi Dana

Hang in there. I once asked the mother of two downs sydrome children how she managed her motherhood tasks with such ease. She said that there was a time when she felt emotionally ‘heavy’ but that when she looked around the community of parents with ‘extra care’ children she came to the conclusion that God seemed to pick the best mums for the hardest tasks. Even though I am not a religious person I recognised the truth of this in the parents who came to my learning centre and it brought tears to my eyes and a smile to my face - none of the faces to the left express this. The very fact that you are posting is proof positive that you are out there fighting for your son. He’s a lucky child.

While you don’t say that you wish to work with your son in a teaching role you may like to visit the new web site I have just completed. It contains 400 free worksheets on learning to read, write and spell…. my contribution to mothers and carers like yourself. I teach children with all types of difficulties - my job is simply to teach and this is all that I do and the children learn - I adjust the pace, the amount of consolidation required and very occasionally the sequence of the learning. However, learning to read is learning to read and the learning as such is the same.

The feedback is the thing that differs. If a child has difficulty focusing then the feedback is all related to focus … “You managed to do 4 words on your own with me have to ask you read the next word - well done - I’m so proud of you!”

Oh, the web address is http://www.readerstogo.info

Unfortunately, I don’t have a lot of great advice here, but I think trying to network and find other local parents in the same situation may help you come up with other local resources. Sometimes there are support groups for parents with children of have ADD/ADHD and LDs. They can offer suggestions and might have information about private schools you aren’t aware of, or even a public school that does a more effective job.

One more thing. I don’t know if this would be helpful. My son hasn’t been through this, but I’ve heard numerous parents comment that Interactive Metronome helped their children. You might want to research their website and also do a search on this site to find out if that might be appropriate for your son. To find their website I think a Google search of Interactive Metronome learning should bring it up.

My son HATES school too so I know how frustrating and upsetting that is. Best of luck to you in finding some solutions.

Laura,

Yes I have looked into IM and it is offered at Harmarville Rehab in Pgh. - its quiet a drive for us so maybe its something we can do in the summer months. He is also young, 6 years old, so waiting for IM is probably best for us right now. But I did call the Children’s Institue which is a little closer to us and I am getting him an evaluation for listen therapy, OT, PT and Speech. They are one of the best pediatric places around here - it will still be a 45 minute drive but we are really lacking in our area for good quality care.
I did talk to the school today and we will be opening up the IEP next Monday and they also will have a reading specialist at the IEP. I made a request to open the IEP every 60 to 90 days with specific concrete goals and he said that was a resonable request and he did not have a problem with it. Everything I asked for he seemed to be OK with. I also asked for a PT eval with the school, again he said OK.
I thank everyone for your support and encouragment! And will keep you posted on my progress…hopefully progress!!

Dana

Just to let you know….you wouldn’t be alone with the long drives! We spent the summer driving two hours (one hour each way) three times a week to vision therapy! It was rough. Now we’re considering LMB and it will be about the same every single day.

Best of luck with listening therapy and everything else! It sounds like you have some positive things going on— and, if you feel it might be beneficial, you can always take your son for IM at a later time.

(BTW, prior to doing IM, they’d test your son to see if he were a good candidate for it. My son scored within the average range so it was not recommended for him.)

This is a frustrating situation and there’s not an easy fix. You may want to seek out other parents in your area with similar situations for support. CHADD or local chapters or LDA can be a wealth of info. They can point you in the direction of good local doctors, tutors, education specialists, therapists etc.
If you have not tried medication for the ADHD yet, I would find a knowledgeable MD or child psychitrist who has had lots of experience and success. It may take a combination of meds considering the epilepsy. Getting a grip on the attention can improve the learning. coordination, etc. It’s not a cure all but it can sure give a big boost and take the edge off. Reading books, reaseach articles on you child’s specific LD issues and learning effective approches and strtegies helps too. Many times I have told the special ed. teachers what to do based on research on what is effective remediation for a specific need. Good luck. Hang in there.