Mommas of Children with Learning Disabilities - Where are you?

[pattimomma]

Not much going on here lately for families struggling with LD.

I am hoping we can start a monthly thread, with updates on what's working and what's not for our children. Some of my best ideas for working with my LD kids have come from this forum. Of course, there are comorbid diagnoses for children with LD and all are welcome to discuss any number of issues as they impact learning, social skills and so forth.

So let's get to know each other!

I have five kids, two of which have LD. Issues my family is faced with - dyslexia, dyscalculia, dyspraxia, executive functioning, ADHD, PDD NOS, CAPD, SPD, anxiety and mood disorder.

My oldest DS (6th grade) is privately educated  - Linda Moodbell, speech therapy for an expressive receptive language disorder, and participating in Fast ForWord, Integrated Listening Systems and vision therapy. I am very pleased with his progress using these methods.

My youngest DS (kindergarten) is publicly educated and has an IEP for speech. He was just given eligibility for SLD yesterday. I am very concerned about how things will go for him because they did not go well for his older brother while he was in public school. 

What's going on with you???

[Peony]

Similar issues here. SPD, dyslexia, anxiety disorder, PDD-NOS, and some other things sprinkled along my kids. 

DD1 is 10 and in 4th grade this year. It has been horrid. She has been in an amazing private school for the couple of years that bent over backwards to accommodate, especially her severe dyslexia. Unfortunately she was also being bullied there this year and the school was unable to get a handle on the situation. It reached epic pre portions before I pulled her out and placed her into public school. Which has been a complete failure in a different way. She receives no accommodations in the overcrowded classroom, she is essentially failing 4th grade now. Self esteem in the gutter. I had a conversation with her teacher yesterday who in a roundabout way called DD1 stupid with her standing right there listening to every word. Thanks.  We did 3.5 years of Sounds and Syllables 5 days a week year around to get her where she is today. Which is functioning in a classroom WITH accommodations. Socially the public school is good because she had friends which she did not have at her old school but I can't bear to watch her self esteem being tossed around like basketball and now thinks she is stupid and worthless. She has threatened suicide several times but sinks into a depression or worse (SPD) if she is homeschooling, BTDT, failure as well. I don't know what we are going to do. I requested a meeting today with the director of her old school to see what possible options exist for her. she will be returning to 5th grade there next year because she will have a different teacher and the problem child will be a different class (spilt grades). For middle school. we've locked in a slot at a project based learning charter school that is 2 blocks away from our house. They have numerous LD children there and seem to be very on top of them. And I think project based learning is going to be a right fit for her. If we can just survive the rest of this year. I am so tempted just to say screw it, and keep her home the rest of the year. But I don't know if I can handle her 7 days a week, she is a very explosive child. Gah! 

[melissa17s]

Hello, my ds fits in here.   He has dyslexia/dysgraphia, adhd, and epilepsy.  Currently, the only services ds is receiving are slimmed down IEP and literacy class with special ed teacher assisting.  Peony, I am so sorry to read that your dd has not been able to get the support she needs- arggg.  4th grade was the hardest for ds, too, but by 5th he felt much better about school.  

Currently, he is in 6th at the middle school and I have mixed thoughts.  He overall likes school and his teachers.  We noticed he was having absence like seizure behavior over winter break, and in Feb talked to the neuro about it.  He uped ds meds.  I still sometimes have seen him spacing off, but not daily only a couple times since.   Ds has been miserable with the change; he has been dizzy and struggled with memory, and I have noticed that his grades have gone down a lot in literacy and math.  He also says that his teachers for literacy (lead teacher, special ed, and assistant) will not do dictation with him, so he has had to write his own work.  They got him a word processor, but he says he does not use it because he is not allowed to.  He complains that they take away points for spelling even when his content is correct.  We have conferences coming up in midMarch, so I am going to find out, if the teachers are fulfilling his IEP, which gives accommodations for writing or if his grades are falling because of the dosage change of his meds and his misunderstanding.  

My other issue with 6th grade is social.  In 5th they told us that they would allow a couple requests for teacher placement.  We asked he be in a section with at least one of his elementary buddies and not with a special classmate from elementary.  In the end, he was placed with the other special ed kid and all of his friends are on a different floor/section than him; all of his elementary friends are together for all classes (I am a bit irritated by this).  We have had issues with the other special ed kid being physically and verbally aggressive.  Ds has had a hard time finding quality friends because many in his section have behavior issues.  Recently, one brought a knife to school.  Ds told a custodian because he was upset by it. The principal told ds to find new friends, but it has been a struggle for ds.  Maybe next year he will be in with some of his old friends again.  

[Sneezykids]

Hi ~ I belong here and I haven't posted in this forum in a long time because we recently moved from Michigan to Ohio.  My oldest, dd 15, is dyslexic and dysgraphic, she carries an IEP at her public school and transferring it from Michigan to her school here wasn't hard and they pretty much do the same accommodations.  The ps here is much smaller and that helps some I think.  She's also probably ADD but we never pushed for a dx on that.  I've home schooled her and she's gone to ps.  Now that she's in 10th grade, we're looking at the bigger picture....graduating her.  She struggles even with the IEP, b's and c's.  Sometimes she's failing a class but manages to always pass.  She has low self esteem and thinks she's stupid and NO amount of any external positive input can convince her otherwise.  We've always tried to hone her skills and let her shine in other ways and she DOES.  She's freaking awesome!!!  But, she knows she can't read even as well as her 11 year old brother so that pulls it all down for her.  She has a lot of problems with executive functioning.  She just can't get thoughts to words to paper.  Very difficult. 

Ds, 11....well I could write a book on him, he is ADHD and has always been "spectrum'y" we've sought an ASD dx a few times.  He has a 504 plan at school for the adhd, he's a talker too and teachers generally love him, especially in science, his fave subject.  It's been a LONG road with both kids and now I'm worried about my little one!!!  (see my other post).

I would like to have more support here.  Sometimes, I feel like I must be the only person on the planet to have two kids like this and nobody understands.    I often feel like I live in a looney bin!!

 For middle school. we've locked in a slot at a project based learning charter school that is 2 blocks away from our house. They have numerous LD children there and seem to be very on top of them. And I think project based learning is going to be a right fit for her. If we can just survive the rest of this year. I am so tempted just to say screw it, and keep her home the rest of the year. But I don't know if I can handle her 7 days a week, she is a very explosive child. Gah! 

I just wanted to say hi and I've been there where you are.  I've home schooled dd too who is severely dyslexic, she also got very depressed.  She hates school still but has friends now.  We're looking at the tech center for her next two years of high school, it's a great program for kids like her...she wants to be a vet tech and they have a pre vet tech program, plus she'll take her core classes (that we heard are a bit easier) the animal classes she'll take in a pole barn and be in a real barn with livestock the rest of the time!!  I'm all for project/hands on for kids who learn differently!!  So, I say, do it and don't look back.  If I were you I would stick out the rest of the year and put her in the charter school in the fall.  Anyway, your post just resonated with me so I wanted to give you a hug and say hang in there

[Peony]

Thanks Sneezy and Melissa for the support, I need it!

Originally Posted by Sneezykids 

I would like to have more support here.  Sometimes, I feel like I must be the only person on the planet to have two kids like this and nobody understands.    I often feel like I live in a looney bin!!

Yep. That just about sums up how I feel as well. 

I pulled DD1 out today. I think we have a decent plan in place for the rest of the year. The old private school has offered to provide the course work for me to do with her at home, at no cost. We have tutors to fill in gaps. I've got a couple of social options I think, homeschooling groups do not exist in my area. And she has all her sports after school. We do the same thing that Sneezy talked about, try to let her shine in other areas. which is sports for her. She is a serious competitive athlete in several sports. Her practices are hard core at her level so not a lot of socializing and she often is the only female in some events but she thrives off it. She eats, sleeps and breathes her sports. And is expected to go to Nationals next month, we should have a better idea after her comps this weekend, but we are being told to count on it. I am glad that she does get to experience something that she is good at and comes easier but she does spend many, many hours training. That comes with a whole other set of challenges. Her life goal has always been to be a coach, she literally has been saying that since she was 3 years old and it could be a viable option, she is excellent with kids. 

[chkpea]

hi, we are in Canada.  My ds is in grade 4.  He is borderline auditory processing disorder, His reading is his biggest area of need - he can read but does not comprehend what he is reading.  He is on an IEP and is getting a lap top of his own to use.  His report card was good this term all B's and a few C's, best one yet.  So far he doesn't mind going to school, we only have a few rough days here and there about going.  I am looking into the Fast for ward program for him as I think this would really help him.  We also have been going to a chiropractor for weekly treatments for Cranial adjustments.
 

[pattimomma]

Originally Posted by Sneezykids 
I would like to have more support here.  Sometimes, I feel like I must be the only person on the planet to have two kids like this and nobody understands.    I often feel like I live in a looney bin!!

Me too!

I am glad to see I am not the only one. Even though I know I am not the only one, it can be a very lonely place. It has been a struggle for many years, that resulted in a due process hearing, to get appropriate education services for my oldest DS. Public school was a freaking nightmare and my whole family suffered terribly. My youngest DS has just been diagnosed LD and I am going through the grieving process of oh no, not again. It's so sad the way a LD affects self esteem. My older DS has horrible self esteem and I can already see the effects on my younger son.

[pattimomma]

How is everyone? Any updates?

My oldest DS who is in a private placement for school is doing wonderfully! He started Linda Moodbell in January at a 'end of first grade / beginning of second grade' reading level. He is now moving into the fifth grade level reading program. His self esteem is improving and he is so much happier (explosive behavior is significantly decreased as well).

As for my younger son we are plugging away at public school. I have some private evaluations lined up so hoping for more answers in the next few months.

chkpea - Are you going to start Fast ForWord? I think it has really helped my DS.

Peony - How are things since you pulled DD out?

Melissa - How is the friends thing working out for DS?

Sneezy - I just realized that we both have April 2011 babies!
 

[Peony]

Still here, still plugging away. We ended up putting DD1 back into the private school but we aren't going every day... The issues with the other child are still very much present. It was the easiest way to get some social time and school work with accommodations. There is no attendance policy so we are taking advantage of it. 

That's great Patti that your DS is making such wonderful progress!

[pattimomma]

Peony - My oldest DS still has school refusal. It's left over from his time in public school and the pattern is really hard to break. He was bullied there in such a sneaky way (kids whispering to him that he was stupid and making fun of him for not being able to read) and when he lashed out in response, he was the one who got in trouble. I wish I had some suggestions to help you, to help the school to get control of it. Is it just one kid? That's what I got from the first post? Or has it morphed into multiple kids?
 

[melissa17s]

Pattimomma, thanks for checking in.  I am not sure that much has changed in terms of friends.  Trying to form an opinion regarding school based on conferences.   They are not letting him use assistive technology because they said he gets distracted.  Dh offered to set up an user account a school computer that limits ds's access, so he do not surf the web, but school was not sure if the school tech would allow it.  In the mean time, special teacher was excited to show how ds improved on her handwriting graph...  but his grades are down in all areas and still writes very little.  Don't want ds turned off to school, so trying not to make a big deal about this.  Instead, offering to help him organize, write at home for him, etc. Ds does not respond well to negative criticism; private cello teacher has lectured ds the past two weekends (sometimes on topics that are none of teacher's business) and ds now dislikes going to cello lessons.   Such a touchy tender age.   

Edited to reflect that after talking to some of the staff including special ed, I feel she is trying hard to help ds.  

Edited by melissa17s - 3/29/13 at 7:43pm

[37amy]

I to have a son with LD and am at a loss with education for him, he will b starting high school next year and we r both terrified. In grade school he got alot of extra help and then junoir high alot less. I just had his last iep meeting and they cut out speech saying he has reached his goals. I tried to fight that but lost. Yes my son has come a long way from being a 6 yr old saying mayb 5 words but is still only speeking at a 2nd grade level. I just dnt know what to do i'm so scared he will b bullied even worse then he has. My son is the most sweetest loving kid and would do anything to plz anyone and yet thats what scares me the most.

[pattimomma]

Welcome 37amy! I suggest that you seek out assistance with your son's educational through an educational advocate. Parent to Parent has many resources and can put you in touch with the right people http://www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx

If you don't mind sharing what state you live in, the moms on this forum can better help you.
 

[37amy]

I live in Illinois

[blissful_maia]

Our 3.5 year old ds has autism. He regressed at about 16 months (lost speech, social skills, and started to exhibit sterotypical behaviours). We live in Canada, and relocated this past summer from Ontario to Alberta (2200 miles!) as my profession pays better here (to help with private therapies) and the publicly funded services are much more comprehensive and have shorter wait times. He is currently in an integrated preschool setting with both typical children and children with special needs for 11 hours/week. He also receives 12 hours/week at home of pivotal response treatment (PRT). He receives 1 hour/week of OT and SLP assessment and the goals set by these therapists in conjunction with us are integrated into the plans that our behavioural aides follow weekly. We also use several alternative treatments... he's on the GAPS diet, we have tried many different supplements over the past 2 years (currently things are pretty basic in that department), we use homeopathy and are currently looking for a chiropractor or osteopath we feel comfortable with. 

He is improving a lot through all his and our hard work... his stereotypical behaviour is very reduced, his once non-existant eye contact is fabulous, etc. but he is still non-verbal. That's the hardest for me especially since he said words as a young toddler so I know they're "in there" somewhere! And I so miss the conversations I had with my girls at his age. :( But we just try to connect with him in other ways, thankfully he's a very cuddly affectionate little person!

Happy to be here with you all!

[pattimomma]

Welcome blissful_maia!

AFM - Last week was rough for my oldest DS but this week he is back on track. His psychiatrist has suggested that we try GABA and L-lysine for his anxiety (yes, an MD psychiatrist is prescribing supplements!) so we are going to try that next week. He has been on Vayarin for the ADHD and when I asked DS if it was working he said, "I don't know, I don't have an attention problem anymore". So I will take that as a yes, it works.

How's everyone else?
 

[deannanmc]

Hi! We are Americans living in Yorkshire, England for work reasons. My daughter, M1, will be four in two weeks and was diagnosed autistic in February. Since then we've added dyspraxia to the list. She is verbal and gaining a lot of spontaneous speech but the extensive scripting/echolalia that developed around her second birthday and continued were our first and strongest indicators that there was something we needed to address. We are trying to work out whether or not we will stay in England--the details are in another thread--for a two-year assignment extension. After that we don't know where we'll go; it will depend 100% on M1's status. She's a really bright, cheerful little girl, but she gets overwhelmed so easily in school. She shuts down to protect herself and we don't know if we're reaching her. 

Right now we're mostly worried that if we stay on for another two years, we've missed the deadline for school applications for Reception Year for the 2013-14 school year. Schools here are public, but we didn't know until today that you don't go to the neighborhood school automatically; it's by application and you get an assigned school where there's room for you regardless of your location. The other schools in our town are nice, but the one with the best special education reputation happens to be literally around the corner from us and we wouldn't have to drive. She's in a private Montessori school now and she can do Reception there, which is fine, but we didn't know that it's harder to get into a school as a Year One applicant. We planned to go home so choosing a school didn't matter, but now that I'm finding out that staying in England may be the better choice we've got major agita over school for 2014-2015. Oh well. One day at a time, I suppose! 

[melissa17s]

For those of you with kids with dyslexia/dysgraphia, have your dc ever used LiveScribe?  I was talking to one of my classmates from childhood and she mentioned a similar pen that recorded speech and writing, and this looks like what she was describing.  I would like to find assistive technology that ds can use at school without getting too distracted.  I would be curious about others experience.  Did talk to special ed teacher about it briefly, but she was not familiar and was going to try to find out if they could get one to try, if the AEA had them available. 

The special ed teacher really made a lot of effort to help ds this week in regards to the difficult classmate.  She found out that the other kid put ds in a headlock during an unsupervised time before school.  She was really upset by the situation and is making an effort to really keep this other boy away from ds even though they have many classes together.  We appreciate that she is taking the situation seriously as are other members of the school staff.  

[Peony]

Patti- It is just one kid. We may have turned a new corner. There are certainly issues and more seem to pop up every day but DD1 is now standing up to her and we are seeing some success. The girl is the one leaving the school day in tears instead of DD1.   DD1 is now on a school break for over 3.5 weeks between a competition, spring break, and a family vacation and then we return there is only 6 weeks left of school. Six weeks we can do!

We haven't used LiveScribe. Another dyslexic student in DD1's class uses an iPad and a program where most of his work is read to him from it. I don't know the exact details I've been struggling to find the middle ground of knowing that the older she gets and the harder the school work gets, she will need to move towards something like that but wanting to not go there before we have to.

[pattimomma]

melissa17s We haven't tried Livescribe but I have a friend who is an adult dyslexic and she swears by it. She is entering her PhD program in Geology and Livescribe has helped her along the way. She also likes http://www.kurzweiledu.com/products.html kurzweil 3000

Here are some apps http://edudemic.com/2012/09/the-50-best-ipad-apps-for-students-with-reading-disabilities/

and some more apps http://www.ncld.org/jsearch?searchword=apps&ordering=&searchphrase=all

Peony I am glad DD isn't getting pushed around anymore! YAY only six weeks to go!

AFM- DS1 is making good progress with his reading and speech. I am so proud of him. That's not to say that there are no rough days but things have improved dramatically. We have him on Vayarin, GABA and L-lysine with B vitamins and he has had two weeks of good behavior reports at school. He actually asks for his supplements in the morning. When he was on Vyvanse he never wanted to take it. Luckily I have an open minded psychiatrist who worked with us to try out supplements, vitamins and minerals in order to get away from traditional meds. I really appreciate having a doc who is also a researcher and keeps up with the scientific literature. We are thinking about getting DS1 an iPad for his birthday (13yrs old in July) for both fun and school. DS2 goes for speech eval next week, OT eval the week after and a neuropsych in May. I am not real happy with his public school right now but we shall see what happens after we get all his reports.

How is everybody? The school year is almost over, will anybody be doing extended school year (ESY)? We will!