Roll Call - Would you share when, how, and what your dc was diagnosed with?

[rafiki]

.

[Guest]

Fascinating question -- should lead to a lot of interesting discussion about the benefits and drawbacks of diagnoses and labels.

 

My dd was diagnosed at age eight with Asperger's. When she was eleven I took her in for a full neuropsych evaluation: the diagnosis was Nonverbal Learning Disorder, which wasn't as important really as the whole slew of broken down test results that clearly showed her strengths and weaknesses in learning and thinking, and the diagnosis of dysgraphia, which led me to work on that much more.

 

DD was clearly a "different" child early on. She didn't explore physically or run away from me or ever, ever take things off shelves or tear them up or break them. She would freeze in any situation in which she was unsure. She talked -- how she talked -- from the age of ten months, but at preschool she was electively mute and wouldn't use the bathrooms. At around age seven or so she began hiding behind me like toddlers do, refusing to talk to strangers. She never wanted to play games with a lot of movement or speed or sudden things, like tag or chase or "boo."

 

However, the diagnosis certainly took me by surprise. I had read a lot about giftedness, because her verbal nature was so incredible and was so much more obvious than the other things, which became really obvious only in retrospect. I thought she was just showing the famous "asynchronous development." This was six and a half years ago; I was aware of classical autism and knew she was not classically autistic, but as a girl she manifested Asperger's differently than boys did, and there were not the typical signals or indicators that this is the direction I should have been investigating.

 

If I'd had the diagnosis sooner, I would have had her in OT and vision therapy at a much younger age. The OT said to me on our first visit: "I wish I'd gotten her five years ago." I think a lot would have been different for her if her physical, neurological problems with space, speed, and motion had been noticed (by me) and addressed earlier.

 

DD loved (still loves) to write, but she had a horrible pencil grip, a hard time forming letters, hand pain, hardly any hand and wrist strength, and an inability to remember spelling patterns from words she read or practiced. I let her do invented spelling for a really long time, because I kept expecting such a really bright and word-driven child to spell correctly. However, looking back, I would not have interfered with that private writing or writing done for pleasure and creative joy; I just would have started a formal spelling program a lot sooner than I did, keeping it separate from work she chose to do on her own.

 

The second diagnosis at age eleven was more for precise information about her memory and learning for me as her teacher as we approached junior high; it didn't change anything I did. It just helped me to understand her a little better, particularly the enormous gap between her verbal levels and anything that involved the addition of physical response or time limits. We played games involving rapid responses, but we'd played them before the diagnosis too.

 

Every child is so incredibly different I don't know that there's any advice I could give that would be applicable to anyone else besides us. But I would like to add that besides formal therapies, which are so expensive and not always covered by insurance, don't overlook alternatives based on your child's interests. Mine has gotten more from her horseback riding than she has from any therapy, including gaining stamina, core strength, hand strength (lifting saddles, doing buckles, hauling hay and food); social skills; balance and coordination; the bond with the horse; and a job that pays in extra lessons and the loan of a horse for shows. She also learned a lot in a series of drama classes, which were much more acceptable to her as a way of learning about body language and facial expression than formal social skills training (we did both).

 

Also: the younger the better. Kids come to a point where they just don't want to do therapy any more. Either they burn out, or they don't want that acknowledgment that they're different or lacking or that somehow something is "wrong" with them, no matter how scientifically neutral you try to be when discussing it with them. When they're younger it's more like play, it can be a lot of fun, and they don't fight you -- and it's easier to work school around therapies when they're little too.

 

And one final comment: get a support system. Moms are the ones on whom most of the burden falls for therapies, diagnostics, tutoring, etc. -- homeschool moms more than most. It's exhausting and stressful. Make sure that you find ways to do things for yourself, to not become isolated or too depressed or wiped out (or that you have someone to help you pull yourself out when you do). And expect that after the diagnosis you will have a couple of hard months while you come to terms with the implications of it all. It can be overwhelming during those first times of research and facing the long-term. It's important to have someone you trust to talk to, whether it's a friend or a psychologist or someone from church or your spouse or sibling... someone who listens, tries to understand, and who supports you.

[Mergath]

My dd was diagnosed after genetic testing with 16p11.2 Deletion Syndrome. We initially had her tested because she has speech, receptive language, and gross motor delays.

 

If I knew then what I know now, I probably wouldn't have had her diagnosed at all. She is still behind, but not so far behind that there is obviously something wrong. Now, however, every time I look at her, I see a disabled person, no matter how hard I try not to. She's an extremely loving child, and I find myself wondering if it's because she's less intelligent, things like that. We wouldn't be proceeding any differently with treatment if we didn't know, so I really wish I'd never found out.

 

My advice is not to put so much weight on a diagnosis if it won't affect your child's treatment. Also, fish oil! It does amazing things.

 

Sorry, I'm usually more talkative than this. I guess I'm having a quiet night.

[EKS]

My 14yo son has been diagnosed with many things:

 

Age 6: "Extremely immature" by the 1st grade teacher, ADHD suggested

Age 7: "Just slow" by the psychologist at the ps, ADHD suggested

Age 8: Visual problems requiring vision therapy and SPD, ADHD suggested

Age 9: APD, Asperger's, and anxiety (for which he was later medicated), ADHD suggested

Age 10: Dyslexia, ADHD ruled out

Age 12: ADHD (and giftedness)

 

As a young child he seemed delayed in several areas, most notably speech. He didn't seem to understand things that other kids just seemed to get. He had a horrible time learning to read. The turning point occured at age 9 or so. We think that the dyslexia diagnosis explains the sensory stuff and the ADHD symptoms, though we treat the ADHD with meds.

 

I wish I had known something was up when he was little as I think that VT and OT would have been beneficial. After we got some firm diagnoses, I tried to tell his former preschool teacher about some of the signs, so maybe if she saw them in her students she could alert the parents, but she wasn't interested.

 

My main advice is to trust your gut. If you think a diagnosis isn't right, it probably isn't and if you think the professionals are blowing off your concerns, seek another opinion. It took several years and thousands of dollars, but we found an answer that makes sense.

Edited September 11, 2010 by EKS

[VinNY]

Roll Call - Would you share when, how, and what your dc was diagnosed with?

Started process with school district when she was 5. They were out of compliance with time and IDEA. Meanwhile evaluated privately through insurance audiologist, Opthomologist, SLP and Dev Ped. SLP said she had severe receptive and expressive language delays being suppressed by cognitive, PDD or autism (the latter she doubted). Dev Ped said she was ADD but couldn't answer my question about her speech issues:001_huh:

 

At 5 yr 10 months she was given an Ed, PSych, OT and SLP full eval through an early intervention site with grant money the director came up with because of my situation with the school district. He knew my sister:001_smile:

 

They said she was dyspraxic, was delayed, low IQ and severe receptive and expressive language delay.

 

AT 7 she was evaluated for CAPD..1%

 

At almost 9, we saw Dev Optometrist. She still has spatial awareness issues and very weak visual memory and sequential. But he saw alot of strengths with her and caught her intelligence:001_smile: i liked that Dr.

 

What flags were their prior?

Sensory issues, eczema, low birth weight, recall issues, played alot by herself, packrat..created a mess where ever she played..rapid speech that ended in 'da'. At 4 when we were doing pre-school she would forget everything I taught her. HUsband and family have speech and learning issues. My side, boys have ADD or ADHD.

 

In addition if you knew then what you know now, what would you have done differently?

Got early intervention for her and her older brother. Shouldn't have listened to other homeschoolers with their fear mongering stories about social workers intrusion on your homeschool or that some kids learn later..just give it time.

 

 

What's your advice to others with non typical children who haven't gotten a formal diagnosis yet and are still trying to put the pieces to the puzzle together?

Get professional help. Majority of the school districts do a great job by providing testing, start there if you can't afford privately. Don't think you can read up on everything and implement all therapies by yourself. Eventually you will be doing more therapies at home (I do now) but I find it more efficient to find out what exactly my child has and needs by someone who has alot of clinical experience and had worked with my child for some period of time.

 

What curriculum has/is working for each of them?

 

for ds 11..Spalding got him reading and spelling. Dictation and narration helped his language skills. Read aloud all books and textbooks till end of 4th grade.

 

dd9 ..LIPS for phomemic awareness, Cloud Nine Manual to help use what I already owned in house to teach math..Miquon, rods, repetition, spiral review, Math-it etc. Mostly therapy helped her..OT, Brian Gym, speech, Jerome Rosner's Helping Your child overcome Learning Disabilitites

Accepting that she will be working at a 2 1/2 year delay and adjusting her math and reading instruction at that pace. Accepting that she is comprehending better and that I can use 3rd grade level material for History and Science as long as I read it aloud, use lots of viuals and review vocabulary consistently.

 

 

 

Any advice for juggling multiple children with special challenges?

 

My older children kept the toddlers upstairs for 2 hours so I could instruct the APD kids. These kids do not do well with distraction and outside noises. This was a reality I had to accept. It was so unlike how I homeschooled the older 4 ..there was always a toddler playing noisily near by and a nursing baby in my arms. I know some people that hire older homeschool kids or college students to help with the other kids. Get help, cooperate with therapists and learn to turn off the special ed school in time to make dinner:001_smile:

 

Accept your limits. This year, I sent my 8th grader to Catholic school because she is very bright and was being neglected by me. My 16 r old is attending CC part time. The other days she helps me with the pre-schoolers.

 

The best thing I did for me was to start walking last year, lose 10 lbs and start some weight training 3X a week in my room with some 5 lb weights...silly but since I don't feel and look so crappy, I am less resentful of the extra time I need to spend with my LD kids.

Edited September 11, 2010 by VinNY

[Tree House Academy]

I don't post in here much, but my older son was diagnose at 4 with Anxiety and ADHD. They have since dropped the ADHD diagnosis and questioned "bipolar" with no definitive diagnosis.

 

We had red flags from the time he was 18 months old. It took a real downhill turn when his dad and I divorced.

[Virg]

DSS 14: We are working on dx of fetal alcohol syndrome, depression, low IQ, etc. It is a work in progress. We first saw symptoms at 12 when his abstract thought process should have started developing. It didn't. As he hit a wall with schooling, friends, etc he became depressed and sullen as he became (understandably) frustrated. I don't know if earlier intervention would have helped or not if DH had noticed the signs. He couldn't answer questions if you switched the question around, always had rote answers, didn't understand word problems in math. Could only do comp questions that didn't need inducement or opinions. He was in PS though at the time and got good grades because he memorized his way through the lower grades. He is going to start Connections Academy, which is online PS. HSing him is putting too much strain on our relationship since he is so frustrated with school suddenly.

 

DSD 11: We just got a dx of Oppositional Defiance Disorder, low IQ and Fetal Alcohol Syndrome. VERY long story about how this was discovered and I don't want to hijack lol. Suffice it to say that she is "the most disturbed little girl" her psych has ever seen. Many signs but it took months of digging and hidden cameras to discover the extent of the issues. If DH had known sooner, she may not have progressed to where she is now, I know it is something he regrets. No curriculum has worked for her because she refuses to do it and refuses to go to PS. No idea what to do here.

 

DS 10: Preemie, has had home health nurses since birth then moved to early intervention, then speech preschool, etc. He has been evaluated by our local Children's Hospital yearly since he was 4. His first visit he was diagnosed with anxiety, articulation, and language disorder. We have since added a reading disorder. He still scores at the .01% in most speech subtests but is a hard worker and gets straight A's. Writing is really hard for him, as proper grammar does not make sense to him and words aren't spelled even remotely close to how he says them.

 

DS 10: Preemie, has had home health nurses since birth then moved to early intervention, then speech preschool, etc. He finally started reading a year ago and is now on grade level (the grade we are doing anyway, we started slowly and are only on 3rd). Just tested out of speech by one percentile! However he has severe asthma, hyper-reactive immune system, allergies, chronic pneumonia, hyperactivity induced by his hyper-reactive system, etc

 

The twins have done well with A Beka but I am moving them to MFW next year to give them more hands on time and less workbooks. They don't have the patience to sit for that long. Plus all the workbooks are really frustrating DS with speech issues, it is way too much reading and writing and he ends up in tears every day, even with me trying to read to him as much as possible and write for him part of the day.

 

I personally like having DXs. It makes it easier for me to do research, come up with plans to help or intervene etc. It helps get the assistance we need. My advice for parents looking for help/answers would be research, research, research! I spent hours and hours on the internet at night searching symptom lists and interventions. By the time we got to someone who could diagnose DSD we had already tried all the behavior plans I could find and it really helped them DX her, to see what she did or (in her case) didn't respond to.

 

As far as advice to juggling multiple children with special needs- I don't have any. I wish I did. We are working with our specialists now to attempt to answer this very question. I would love to hear any advice that others have on this! Esp for people who don't have money to hire help or special needs babysitting for "me" time.

[Carrie12345]

Dh and I knew something was up with ds when he was about 3. He had learned to read, was doing a lot of math, could identify all the different periods of classical music and many of its composers, had an overall steel trap of a memory, and yet would not potty train, ate very few foods, resisted traditional discipline styles, and had difficulty playing "normal" with other kids.

 

When he was 4, dh and I were watching an episode of Law and Order where the criminal (it's always the dang criminal) had Asperger's. It flipped my light bulb's switch and I ran to the computer.

 

Our pediatrician (who runs a "neurological clinic" in the office) "diagnosed" ds in about 20 minutes. Though he made it clear that there was no medicinal cure, he immediately offered up medications as a treatment. I definitely agreed with the dx, but was less than thrilled with the assesment.

 

We spent the following 8 or 9 months going through evals at a developmental center 90 minutes away. Just about any specialist imaginable saw him at some point. It was worth every second and every penny (which was "only" a few hundred dollars after insurance).

 

My 7yo dd has not been professionally evaluated, but I recognized ADHD traits when she was about 5. I'm technically dx'ed as ADHD, though that's just with a primary HCP's quick assesment. She also had a few signs of dyslexia, but I just kept them in the back of my head b/c my other dd (13 months older) was just starting to outgrow similar "issues", and I wanted to see if dd7 did the same.

 

Today, she's made some progress, but the signs are clearer. I'm 90% sure she has ADHD, dyslexia, and probably dysgraphia. I don't intend to have her evaluated for probably another 2 years, when she'll be required to do standardized testing, and should probably have some accomodations.

 

The hardest part, imo, has been settling on curricula and methods for each individual child - Aspie, ADHD/dys-whatever, and neurotypical. And all 3 are rather asynchronous! Actually implimenting the stuff has been much easier than researching and planning!

[Maverick_Mom]

July, 2004: Ds #2 had his first visible seizure (we later learned that he had probably had some seizures at night over the previous months), was hospitalized for three days, and was subsequently diagnosed with epilepsy.

 

September, 2006: in the process of collecting copies of his (by now voluminous) medical records, I received in the mail a copy of his records from that first hospitalization. No one had mentioned this to me at the time, but on the records the attending physician had written, "Rule out Asperger's, PDD-NOS."

 

January, 2007: the Asperger's diagnosis was confirmed in an evaluation, which also hinted at ADHD.

 

Sometime in 2009: his pediatric neurologist diagnosed him with ADHD.

 

There are also related learning difficulties (including dysgraphia) and, I suspect, sensory issues.

[peacefully]

.

[IsabelC]

Ds was very sensitive / high needs right from birth, but the signs that he was different really ramped up from about age 2 onwards, when he did not show the normal development of empathy and social skills. We missed it for a long time, because (a) he was our first child and we weren't the most confident parents, and (b) our next baby was born when he was 2, so we thought it was just really bad problems with adjustment to no longer being an only child.

 

When he got to age 4 and we enrolled him in kindergarten for the following year (that's the equivalent to US "preschool" btw - what you call kinder is called "prep" down here), this was a big wake up call as we could see that he was just so different from his peers. That's when we went down the evaluation path and he was diagnosed with Aspergers. The System swung into action with various interventions designed to get him up and ready for kinder. During this time was when we decided to go with home schooling, and this eliminated much of the stress.

 

The only thing I would do differently would be to decide on home schooling earlier!

 

 

In addition if you knew then what you know now, what would you have done differently? What's your advice to others with non typical children who haven't gotten a formal diagnosis yet and are still trying to put the pieces to the puzzle together? What curriculum has/is working for each of them? Any advice for juggling multiple children with special challenges?

[SailorMom]

I would have to write a book on the struggle we've had to get DS properly diagnosed. I feel like right now we are in the final stages. Start testing at the Neuropsyche next week. The only reason we are there at all is because while doing a search for some other (10th, 11th, 12th) new way to help him with his dysgraphia and dyscalculia. We've conquered the dyslexia for the most part, and after 5 years of speech, he sounds pretty darn good (after 3 years of the wrong therapy, I diagnosed him myself, and then told a new therapist to please retest him.... What do you know! I was right)

While searching for some new way to help him, I kept running into this information on agenesis/dysgenesis of the corpus callosum. I read for days. Took notes. I couldn't believe how much of it applied to my son. I brought my notes to my family practice doc, and was summarilly dismissed - eyes rolled, heavy sighs, treated like a hypochondriac, etc. "Oh - that's just too rare to even be considered.".

So they sent us to a neuropsych to do some testing. Talk about redemption! He brought the ACC and DCC up before I did!!!! That became his preliminary diagnosis, and he insisted my family practice doc send us to the neurologist (which is what they had adamantly denied to do two weeks before).

Oh - the call to our "special case manager" was so much fun. I was nice and polite - but you could hear her squirm.:lol:

So - my advice? Don't give up. Read, read, read. We're all they really have, and their only advocates. If he does have this, I will be so angry that it took me to figure it out on the internet and that so many doctors have failed him. Might even write a newspaper "letter to the editor" about it.....

I know there are cases where there really isn't much as parents that we can do - but I was told my son would never be able to speak clearly, and they were wrong - no one can tell now. I was told my son was just not smart enough to do very well in school. They were wrong. Look at his 7th grade curriculum below. I was told that he just had an LD and that we just had to live with it.... wrong.

Don't give up.

Edited September 17, 2010 by SailorMom

[SweetMissMagnolia]

Well,after being practically kicked out of pre-school for not being able to "sit still" in class or follow the teacher's instructions,we had our son tested but he didn't score high enough to be ANYTHING. :confused: This was a few years ago-probably at age 4-5. Earlier this year,we had seen other changes in behavior and decided to have him tested again. It came back slightly positive for add/adhd and higher positive for Aspergers's syndrome (high functioning autism). Our pediatrician's office refered us to the child behavior specialist that was in their building and she did both testing. Now that we have answers (and believe me they were sooo hard to hear),we are working on things.We tried to go the "no meds" route for a while and things were just sooo chaotic that I had to do something (for all of our sanity) so he is now on meds (vyvanse) and we do monthly or bi-weekly therapies with the behavior specialist. He's been on meds about a month and we are seeing great results.We still have some "bad days" but I think that happens with everyone not just kids in our situation. Our psychologist is very happy with the results and we are scheduled to see the pediatrician who does the meds next week.I'm sure he'll be pleased with the results too. Slowly but surely! :)

 

Julie-stay home wife/homeschooling mom to 7 1/2 yr old Zachary

[bonnie_ann]

I knew John had special needs early on. He showed signs of having sensory issues as a newborn, then didn't talk until 27 months old. We had a speech eval done through our county (we live in Georgia) and he qualified for the Babies Can't Wait program. He received a few months of speech services then we moved to our current home which is in a different county. By the time we moved he was talking so we never picked up with speech. His pronunciation has been perfect since the beginning and he has a super vocabulary, very interested in words, like me. :-)

 

John attended pre-school a few mornings a week at our church, and his teachers were telling me that he never wanted to do his work, just play, avoid table work. I knew that could just be John being a young boy, but part of me also knew that John likes to please and show off when he can do 'work', so I felt that maybe he just could not do the fine motor tasks they were directing him to do. I had an OT eval done through our county and he qualified for OT services, and has had an IEP ever since.

 

He is in a general ed class now, with a parapro in there to support the class as well. It's a nice fit for him. Unfortunately, his reading is not where it should be and I notice him not wanting to read, not wanting to do his work, so I know it's because it is hard for him, too hard. He is being seen by a great small group teacher and she is doing Fundations with this little group she sees, a group of 1st graders. I'm hoping this will help, but I am concerned that me doing Saxon Phonics with him daily might conflict with Fundations, any thoughts?? I'm starting Saxon with him Monday. I can pull him out of the Fundations reading small group and just have him be seen for the language/writing part of their lesson instead. I might have to do that. He only just began with Fundations small group a week ago. He might move faster/better with me. Thankfully, he loves one on one time with me no matter what form it comes in so he works well with me!

 

I'm a former public school special education teacher myself. I have taught all different types of children with a wide range of special needs. SID/PID, LD, BD, MID, and collaborative in a general ed class. I also taught one year of general ed 1st grade, where I used Saxon Phonics each day. It was thrilling to teaching them all to read, but I missed the collaboration I had when teaching special education so I never returned to gen ed.

 

When I had kids I considered homeschooling, and I even purchased 2 sets of curriculum, Sonlight Foundation Year (I believe that is the title), and Living Books Curriculum, first year, for K. My husband was not on board, and nobody I was friends with was doing it, so I just didn't have the support I needed.

 

We live in an exceptional school district so for now we are sticking with the public school here. I'm about to start 'after-schooling' my son in Saxon Phonics, and his friend/classmate as well, but separately, as they both have attention challenges and can be silly together. :-)

 

John is my oldest child, but I also have Max (5.5), and Anna (4.2). Learning comes easy to Max, but I see that Anna is already stuggling a bit. I'm thinking about doing that Scaredy Cat program with her. My husband is Scott, he works at Georgia Tech in the OIT department.

 

I plan to tutor children out of my home in the areas of reading, writing, phonics, etc. I may tutor high school students to prep them for SAT's in Reading/Writing, help with essays, etc. I can't overextend myself because I get stressed and full of anxiety/depressed, so I try to be careful. I'm Catholic and pretty involved with activities at my church, which I love. My interests are reading, traveling, healthy living, and living simply. I strive to keep my house clutter free (failing right now!), and organized. I decorate on the cheap and use Feng Shui to guide me. I think bartering is awesome. I love Jimmy Buffett and most music. It makes me happy. :-)

 

That's pretty much my story!

Edited September 25, 2010 by bonnie_ann
Added more info about my family.

[Laura Corin]

Delayed motor skills/dyspraxia, spotted by pre-school teacher, confirmed by OT when he was 4 1/2. We pulled him from school when he was six - the two schools we tried couldn't cope with a child who could learn but not write.

 

We just worked on mechanics of writing separately from expression: I was his scribe for much of his work. Slowly he was able to write - now he writes fluently but slowly. He had OT for three years, then we made sure that he continued with coordination-based activities (Taikwondo, etc.).

 

Laura

[mommama]

Where do I begin....

 

All of our children are adopted from foster care, so "issues" sort of come with the territory. All were drug and alcohol exposed. The older two went through abuse and neglect for the first two years of life, before coming home to us.

 

E-5yo son, home since age 2; diagnosed with Reactive Attachment Disorder, Autism (high-functioning), Fetal Alcohol Spectrum Disorder, so far; 'developmental age' can range from 5y to 18m depending on the day; He's the only one doing 'school' work now (see below). We schedule about 30-45 minutes of work each day. Some days it takes him 20, some days 3 hours, but we don't give up and just send him to a resource room (as was suggested in our local public school) so he's learning. Yay!

 

J-3yo son, home since age 2; mild cp (motor skills issues mainly) same attachment and substance exposure issues as E, but no official diagnoses, mainly because we feel like we've BTDT....we're not looking for services so we're not really looking for any more labels either; fortunately for him we have our oldest and so know exactly how manage his behaviors and have skins thick enough to take everything he can dish out. and he can. dish. out!

 

S-2yo daughter, home since birth (and what a difference good attachment makes!!) FASD; has a much lower frustration tolerance (and a much better right hook) than most two year olds; veeeeeeeeery delayed speech;

 

N-1yo son, home since birth; screams, screams, screams; has the self-regulation of an angry wasp!; mild cp (mainly motor skills); did i mention that he screams? a lot;

 

We do home OT, PT, ST; we are very, very structured; we will be schooling year round, starting kids when they're ready (J, for example probably won't start kindergarten until 7 or 8) and using what works.

 

ps--I'm glad to have found the forums and this board in particular

[melmichigan]

I don't think I have ever written this all out:

 

DD10 was diagnosed with Aspergers in 3rd grade. Finally in 4th grade the PS was forced to start work with the speech therapist and social worker. I am told it is a "tenative" diagnosis because it "may just be related to her level of giftedness". :001_huh: Most days it fits. She also has dysgraphia and SID.

 

DD7's were both premature and have Cerebral Palsy, although after 5 years of intense OT, PT, and bracing, they now walk, run, and ride bikes like everyone else. Twin A is diagnosed PDD-NOS. Twin B had a period of time with very low oxygen levels that went unrecognized by her nurse (you don't want to know). We were told at 6 months that she was deaf. She is not. :D She had a pronounced speech delay and is currently diagnosed R/O APD, she also has SID.

 

DS5 is currently in speech therapy with the PS for the 3rd year for a pronounced generalized speech delay.

 

I have no magic answer for curriculum, each has been different. I have no magic answers to juggling them some days it takes everything I have.

 

Me time? You mean like typing on the computer, using both hands? :lol:

[ReneeK]

I just wrote about this on my blog we are still trying to put the puzzle together.

 

At this point I would not do anything different.

 

As far as getting a diagnoses I wrote about this also on my blog. Follow your heart, you are your child's voice. If knowing isn't a big deal then respect others who want answers.

 

Curriuculum. Would be MUS, AAS, SL and a little bit of this and that!!!!:001_huh:

 

I just started to formally educate my son and daycare girl for pre-k this year. I was hoping my dd would become much more independent. Which at this point is not going to happen. My son has no special needs. I just make sure I do the other kids first because I never know how long my dd will take. I don't want to neglect his needs and my dd is a big challange every day. Some days after her I feel stressed and I want to be refreshed when teaching the little ones. I don't want to rush them because it is so close to lunch or nap time or I am just to fed up and want to get it done. I want them to see the joy that I have in schooling them. I do have joy with her but somedays it doesn't show up after the drama:tongue_smilie:

[DawnM]

Don't have too much time at the moment, so will answer very briefly now and come back later.

 

Oldest has Asperger's. He also has some delays with reading and writing. Writing is physically hard for him.

 

Thankfully it is my oldest and he can do the same level as his brother 2 years younger. So, we have them together for LA but they do their own math programs.

 

HANDS ON is the best curriculum.....period. Reading is tough and colloquial expressions and such go right over his head. He is a concrete thinker. Right now we do HOmeschool in the Woods and Winter Promise. Not sure what we will do for high school or once the HSTW is complete.

 

Dawn

[Crimson Wife]

My DS has speech & language issues. At 2 1/2 he was diagnosed with articulation disorder and mild expressive language delay. His speech therapist told us she suspected he might have CAPD but that couldn't be diagnosed until 5 at the earliest and possibly not until 7.

 

He's made a lot of progress in the past year but I'm concerned there may still be some language issues. In particular, I worry about "stealth" dyslexia. He's reading but often he'll confuse words that are phonetically similar but only one makes sense in the context of the passage. And he doesn't seem to "catch" the mistake the way his older sister did when she was learning to read.

[sbgrace]

My son has an autism spectrum disorder (pdd-nos) and metabolic condition. The autism was diagnosed at 2.5. The metabolic condition was detected at 3.5 after a lot of decline. I suspect learning disabilities but haven't yet sought formal testing.

 

I am glad we got those things diagnosed and wish we had known sooner.

 

That's the short of it...the long:

 

My son was different in a way I couldn't put my finger on in terms of social interaction compared to his twin brother even as a baby. I don't think I would have noticed if he didn't have a same age typically developing sibling right there at the same moment as it was subtle things.

 

His first obvious delays were actually gross motor--he missed the rolling over milestone and we ended up in early intervention at six months. His final dx. was mild hypotonia (later diagnosed with muscular myopathy actually). We added some other therapies around 15 months for other delays.

 

He had severe reflux that was interfering with both development (we believed at the time) and feeding. He would only willingly swallow more than a small bit of my breastmilk because it hurt to swallow. We fed him while he was asleep. He spit up blood from an eroded esophagus at 3.5 months. By six months he started dropping off the growth scale and was well below for all measurements by nine months. It wasn't until 18 months that we found reflux medication that controlled his pain. We struggled with multiple GI issues.

 

Nonverbal communication was delayed. He was late to point (14 months) to show us stuff. He was very late to do some nonverbal stuff like nodding his head yes/no (well into preschool years). He didn't consistently turn to respond to his name.

 

Starting at about 18 months he had as series of difficult to treat ear infections that lasted too long. At 23 months he had a scope (with anesthesia) to look for causes of his failure to thrive/reflux/GI problems.

 

Around that 18 months point we started a decline in health and development that accelerated after that scope around age two. At 2.5 he was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified. I'm glad we got the diagnosis and wish I had it sooner because I had a lot of emotional ups and downs with the "is he autistic/isn't he" thinking leading up to that point. The diagnosis also let me select the best helps for him.

 

The psych. who diagnosed him strongly suggested our pediatrician run some physical tests including sleep tests and metabolic panels. Our pediatrician told me it was a money making scheme as the Children's Hospital were he was diagnosed would be making money on those procedures. I listened to my great regret.

 

He slept increasing amounts and was fatigued even while awake. He lost developmental skills like pretend play and withdrew into repetitive behaviors much of his awake time. Things got worse and worse until he was sleeping sometimes 19 hours a day and I was worried and constantly searching online for what might be wrong even as the pediatrician was adamant that he was just fine.

 

At three-ish I called and asked a pediatrician family member to please come and spend a day with us and tell me if he felt my son was sick. That physician did come and ended up ordering some basic metabolic and other labs. He told me the metabolic labs were abnormal but he didn't know what they meant or what action to take to investigate and neither did the other doctors he had consulted. Our Children's Hospital couldn't get us into metabolics for six months. Meanwhile, my son was getting sicker and sicker. I really felt he was dying.

 

I researched his abnormal lab, which was pretty basic and broad as this was a very basic metabolic lab, online along with all his symptoms for days and days or maybe it was weeks. It was a blur of worry and desperate feelings and I can't recall specifics. One night I came upon a description of Mitochondrial Disorder and it was the first thing I ever read that fit all my son's symptoms. I called Cleveland Clinic the next day and told the intake person my son was dying (I believed he was) and cried on the phone and they got us in that next week. I now know there is usually a long wait and I still don't know how we got in that fast. So we made the long trip and the metabolic neurologist felt my son did likely have a metabolic condition. He ran labs and told us that we would hear from him in a couple of weeks. We had the labs on Saturday. He called me on Monday because the initial labs were so abnormal he was concerned about his heart and brain and wanted medication to start immediately. We had an echo. His heart was ok. We started medication and my son very quickly gained back those skills he lost. He was more alert and awake than he had been in as long as I could remember.

 

We began our long journey to trying to find an exact diagnosis. My son's official diagnosis on his metabolic records is muscular myopathy from an unspecified metabolic condition affecting mitochondrial function or something like that. Someday will likely have a name. He's been extremely responsive to and stable stable so far with mitochondrial treatment.

 

I'm certainly glad we were diagnosed (both the autism and metabolic) and my only regrets involve not getting the diagnosis sooner. I wish I had known the things I know now about what to do and not to do with him.

 

He likely has some learning disabilities. I find myself hesitant to get a diagnosis for that because I'm afraid of what I'll be told. I know from my experience that knowledge is a good thing and helps you target treatments specifically. I just have a mental/emotional block with the learning issues right now.

Edited September 28, 2010 by sbgrace

[elise1mds]

DS: Asperger's, ADHD combined type, and GAD

DD: Probably bipolar; currently GAD/separation anxiety, rule out bipolar according to the doc. We're still figuring out her diagnosis/es.

 

What flags were there prior?

 

DS: He never mimicked. He never sat still. He was a late talker. He walked incredibly early but had (has) fine motor skills issues. He had massive separation anxiety until the age of... well, nearly 5. He didn't understand how to be around other kids or interact with them. He had (has) no impulse control whatsoever. He picks up scientific knowledge like a sponge and happily lectures anyone who will listen, whether he's right or not.

 

DD: Hardly ever slept as an infant. Has always had massive mood swings, either way up or way down (snuggly). Was "allergic to the floor" for a good chunk of years 1 and 2. Who knows what else. I'm still pondering.

 

In addition if you knew then what you know now, what would you have done differently?

 

Ahhhh that's a toughie because I was so clueless I honestly thought DS was normal for a long time. I don't know that I could have done much differently other than fought for treatment earlier or maybe gotten massive amounts of psychological training before giving birth to my children. I'm not sure.

 

What's your advice to others with non typical children who haven't gotten a formal diagnosis yet and are still trying to put the pieces to the puzzle together?

 

Take a deep breath. Take one day at a time. Realize that while you're fighting for them (or with them), you're trying to make their world better, and even though it's a gigantic struggle, the ends are definitely worth the means. Read every book on the shelf so you know the questions to ask or discover the answers already. Don't take 'no' for an answer. Know that sometimes it'll be one step forward and five steps back, and that's okay. Just take another deep breath and start over. Oh, and don't forget to take care of yourself sometimes!! (That last piece of advice is one I could use right now. :001_smile:)

 

What curriculum has/is working for each of them?

 

DS: Math-U-See. Tons of science. Lots of oral questions to avoid writing. Handwriting Without Tears. I have my list of curriculum on my blog.

 

DD: Currently in private school with no plans to bring her home. She'll be in public with an IEP before that happens.

 

Any advice for juggling multiple children with special challenges?

 

Take more deep breaths. Take yoga classes. Take two margaritas and call me in the morning. I reiterate the need for taking time for yourself, but also each kid is going to need one-on-one time, too. If/when the kids are old enough, try to explain to each of them the particular challenges of the other. For example, I have to explain to my son that my daughter feels lots more emotions than he does and will, consequently, flare up much faster than he does. I have to explain to my daughter that my son doesn't understand what it means when she simply stands there and shrieks at him; she has to use her words for him to understand. Remind them that they each have their own special talents, like my DS' knowledge of science and DD's talent in music and art. Tell them you love them 1000 times a day, even when you feel like just giving up altogether. Remember that each day is a new chance to get it right.

 

And lastly, we need lots of these: :grouphug: :grouphug: :grouphug:

[Dobela]

What flags were their prior? In addition if you knew then what you know now, what would you have done differently? What's your advice to others with non typical children who haven't gotten a formal diagnosis yet and are still trying to put the pieces to the puzzle together? What curriculum has/is working for each of them? Any advice for juggling multiple children with special challenges?

 

 

I have 2 children with special needs

 

Bubba: saw signs of sensory issues when very young (2-3yo) but he didn't qualify for OT. At age 7 he was still unable to write name and finally qualified for OT. After 2 years of OT tested out (but still has fine motor issues). At age 7 was also still not reading but I attributed it to maturity. Could only do math if problems were the same direction, could not switch from vertical to horizontal problems. At age 8, almost 9, still not reading but finally was able to describe words jumping around on the page. Could do other subject orally only. Found a vision therapist and hired a specialized reading tutor after ed psych evals suggested dyslexia. Vision therapist discovered that eyes were tracking separately and didn't recognize depth. After 16 months of vision therapy signs of dyselxia are so minimal that dyslexia is questionable. Sensory issues also largely diminished as well. Will finish reading tutoring (Scottish Rite method) in November. He went from not reading to a 4th grade level during that time. Still working 2 grade levels behind peers due to time lost with vision issues. I am starting to wonder if ADD is also an issue. Had no success with multiple curriculums over the past several years. He is now doing reading with tutor who is using Scottish Rite's Taking Flight and Winston Grammar. Other subjects are being met with BJU DVDs right now and he seems to be doing ok so far.

 

Princess Busy Body: Born at 26 weeks gestation weighing 1 lb 14 oz. Biological mother was incarcerated, never received prenatal care, and tested positive for drugs at birth. Was incarcerated before and during entire pregnancy (which says lots about prisons). Was also taking multiple meds for high blood pressure, diabetes, and other health issues. Princess was released from hospital after 7 weeks in NICU into foster care. She has been with us since that time. We received her 7 weeks before her due date weighing 4 pounds. She did not have any meds or monitors. Over 150 medical appts first year. Struggled with aspiration issues and failure to thrive - inability to gain weight due to feeding issues. Retinopathy of Prematurity -eyes not developed before birth. Made good progress after birth but is now quite nearsighted and will always struggle with vision. Received no OT until this year. Pt was received briefly when walking was delayed and now for low muscle tone. She developed an unusual running gait and could not keep up with younger peers -those alerted me to possible problems. Now receiving speech therapy for multiple oral motor issues that mostly effect eating and swallowing. Also receiving OT for fine motor, oral motor issues and delays - all related to low muscle tone. No curriculum being used formally.

 

 

How to juggle children with special needs when you have more than one? You have to ask for help. The first year of Princess BB's life my parents were great to care for and teach Bubba or go to appts with me. If someone offers to help. you accept it. My dad has started taking Bubba to homeschool activities while I take Princess to therapies.

 

You have to also realize your own limitations and set priorities. Sometimes it was all I could do to cover reading, math, and grammar with Bubba. I had to allow myself to skip other subjects. My husband had to start helping with household chores like dishes and laundry.

 

You have to take care of yourself. You have to take breaks. I live for my knitting night out. For 2 hours every Monday I get together with other women and just knit. If knitting is cancelled, I still leave for that time and find something to do or a store to wander around in. It helps me recharge and be a better mom.

 

You have to lower some standards. Feeding your kids scrambled eggs and cereal for dinner on busy weeks is ok. So is take out.

Edited September 29, 2010 by Dobela

[cjbeach]

I feel like my ds's dx has been revolving or rather evolving as he has matured.

Started out "speech cessation" then "speech delay and hyperlexia" then "pdd-nos hyperlexic trait" and more recently "HFA versus Aspergers, hyperlexia"

When I look at the definition of all the diagnoses, he fits a little bit or this and a little, bit but 100% of the hyperlexia definition. But hyperlexia is usually under the umbrella of ASD so... (and around the circle we go again).

[razorbackmama]

What flags were their prior? In addition if you knew then what you know now, what would you have done differently? What's your advice to others with non typical children who haven't gotten a formal diagnosis yet and are still trying to put the pieces to the puzzle together? What curriculum has/is working for each of them? Any advice for juggling multiple children with special challenges?

 

13yo ds - PDD-NOS and Mixed Receptive-Expressive language Disorder - diagnosed with MRELD a couple weeks ago and PDD-NOS yesterday. His main red flags were (are) an inability to understand language, both written and verbal. He also has excessive interests, which is why I took him to be evaluated for the PDD, but they said that they aren't excessive *enough* to be Asperger's.

 

What would I have done differently with him? I'm not sure. I have been fighting to get him evaluated for several years. I knew something was up (particularly with the language - honestly I think that is his main problem), but I had to fight with my husband and then different doctors/specialists just to find out where I needed to GO to get him evaluated.:banghead: The biggest help I found in trying to figure that out was the book, The Mislabeled Child. That helped me see that what he was dealing with was a language problem.

 

The curriculum that works best for him is something with not only all learning modalities represented, but ultimately something that EXPLAINS. For example. He does not learn well from books (particularly if they are on grade level - he's about 2-3 years behind on reading level). However, audiobooks don't work either because it's just a reading of the same words. And the LANGUAGE AS A WHOLE is the problem, not the reading ability. So a teacher presenting the material in the text is best. However, I cannot do that with everything, so video-based curriculum works best for him, provided it's not grade level (except for math - he's fine with math).

 

12yo ds - PDD-NOS. He was diagnosed when he was 4. I didn't really have any red flags - just thought he was creative and different. We found out something was off when I took him to a speech eval since he wasn't talking really at age 2. The SLP noticed that he was not playing with toys properly. That led to being seen at the developmental clinic, and oh, funny thing, it WASN'T normal for him to echo every word we said and not point things out in his environment. He also had visual stims.

 

Now, at age 12, he's perfectly normal. Yesterday the developmental ped that saw my 13yo suggested we have him re-evaluated because 15-20% of kids who are diagnosed on the autistic spectrum before age 4 will then go off the spectrum (or move to a different spot on it) AFTER age 4.

 

I also suspect he has ADD - he's just "out there" sometimes. It's not TOO terribly bad, but it can be frustrating for us both. It's hard to tell if he's just being lazy or what.

 

10yo dd - I highly suspect dyslexia. We have a date to have her tested. Her main red flag is that she couldn't spell a lick until we started using AAS (which, funny thing...it's an O-G based curriculum, and O-G is THE method to teach dyslexics to read/spell). She cannot tell time very well with an analog clock. She has trouble still with her right and left. She cannot alphabetize well.

 

8yo ds - I am almost positive he has ADHD. The flags started showing up before age 2, to be honest. He was just "different." I remember googling about the effects of moms taking Zoloft while they were pregnant, to see if they had now found that it had caused problems in the brains of the babies. (I couldn't find anything on it.) But he's always been immature for his age. Even at 8 he seems more like 6 or so. He is very emotional - cries at the drop of a hat. He cannot eat a meal without getting up at least once to either just walk around the house or move to my desk chair (which is right next to his chair at the table). He is super messy and loses things all the time. He cannot follow oral/written instructions. He gets super distracted. He interrupts. He cannot wait in line.

 

I also suspect that he has dyslexia (it and ADHD often go hand in hand). He still is a very struggling reader, even though I have been working with him since age 5. He also has a tendency to mix up his b's and p's.

 

How do I juggle with multiple kids and multiple issues?????????????? Your guess is as good as mine.:glare: I honestly am going nuts.

[RamonaQ]

sorry-I started feeling this was just to much personal info so this is an edited down version.

 

Ds is dyslexic. Yes, we did diagnosis, but not immediately. It has been helpful in that it pointed some helpful new directions, along with helping me understand how to plan for the future, and set appropriate expectations.

 

ould I have done things differently?

I wish I would have started getting the ball rolling early. I KNEW, in my heart of hearts, that ds was dyslexic by the end of 2nd grade. However, I listened to others with the "wait and see" attitude. Not necessarily getting a diagnosis earlier, but instead starting to use more OG approaches in 3rd grade-- instead of waiting until end of 4th. I also wished I had investigated and used more curriculum designed for dyslexic kids as this has really made a big difference for us.

 

What's your advice to others with non typical children who haven't gotten a formal diagnosis yet and are still trying to put the pieces to the puzzle together?

Listen to your gut. YOU know! And that, most likely, you are already doing what is best for your kid. That was such a great message I received from the neuropsych. team-- homeschooling our son was the best thing for him since we could meet his individual needs and his confidence did not suffer.

 

Also, find support. One of my best friends reminded me, as I was feeling weepy and burnt out, that in ps ds would likely have a team of teachers helping to figure out what he needed. In hs, it is pretty much me. That really, really helped me, and was another part of the reason for a diagnosis, along with hiring a tutor. And using an expensive curriculum.

Juggling multiple kids:

My dd is a typical. book/reading-based learner. So I only have one that has special needs. Last year I worked REALLY hard with ds-- getting him set up with technology, re-mediating phonics issues, helping him work through a math textbook and writing his own work. I really did the bare minimum with dd. However, this year that focus has paid off. Ds is working FAR more independently.

 

I have also moved the kids so that they are NOT working in the same area-- so ds is alone and I am not tempted to rush in and help him the second he seems to struggle. This year I am putting the emphasis to my daughter.

So maybe that is it-- some years one child versus the other(s) will receive extra attention, and it may be to the slight detriment of the other, but that the next year you can focus on the other child(ren). Last year I had a lot of guilt about this, but this year, I feel really good about how my dd is getting good, quality focus from me, and ds is really rising to become more independent. I have to remind myself constantly that this is a long, many year, journey.

Edited October 2, 2010 by RamonaQ

[Guest ampd4196]

Hi! I am new to this and I hope I do nothing to offend anyone. I have no clue what all the abbreviations are so bare with me please.

 

My Daughter age 11 was just diagnosed with severe Dyslexia. she is the 5th grade and under a 2nd grade reading level. I noticed when she was in kindergarten that she was not retaining the Alphabet. so we held her back because of her birthday being a little early. the next year nothing changed. She started Special Ed in 1st grade. Over the last 5 years not much has changed in her ability to retain, comprehend, or decode. Finally after 5 years of waiting for a change I tool her to a professional. Thank Goodness!! I kept telling them there is something completely missing here! She has more common sense than most adults and very talented in sports. So I was totally confused by what could be wrong. I originally thought Dyslexia was just seeing things backwards and spelling backwards. After Finally reading about and understanding that it has to with Retention, Comprehension, and Decoding a light bulb seared my brain. I knew immediately she was Dyslexic. I just wasn't sure how severe.

 

I wish I would have trusted my mom gut feeling a couple years back and got her tested then. Now I am having an IEP done professionally for her that should last through the rest of her years in school. Now I am having trouble understanding what I can do for her. I need a program for her at home and was looking at the Barton System. I would love any suggestions. LIke I said I am new here. So if there is a post somewhere else I'm sorry.

 

I am glad I got her tested and am now able to understand where the gap is with her learning. I am also very proud and feel very lucky to have a dyslexic genius.

 

thanks

[Mama2Many4]

Would you share when, what, and how your DC was diagnosed with?

 

My Oldest son was diagnosed with High Functioning Autism/Aspergers when he was 3 years old.

 

What flags were their prior?

 

From the time he was about 5 months old I knew something was different about him. He never played with toys right. He would spin the wheels on a toy car or truck for hours, never actually pushing or playing with the truck. He would at the age of 1 line things up. Crayons, toys, markers, cups. Everything would always be lined up into a convoy. There was the parroting at one point where he would repeat whatever anyone said, not knowing what he was even saying. He flaps his arms, walked on his tip toes and runs very awkward. Many more things I noticed but too many to list.

 

In addition if you knew then what you know now, what would you have done differently?

 

I always suspected that he had Autism, or at least something like that. I don't know that there is anything I could have done different. I did my best then and probably would do the same again.

 

 

What's your advice to others with non typical children who haven't gotten a formal diagnosis yet and are still trying to put the pieces to the puzzle together?

 

My advice would be to trust your gut. If you feel deeply inside that something is "off", go with that. I went through 3 peds before one finally took me seriously and sent the papers to the center for him to be evaluated. Keep on it, don't let up.

 

What curriculum has/is working for each of them?

 

Well, we are currently doing second grade with him, and so far the curriculum listed is going well. He really is into science, tolerates math, and is pretty bored with history. I'm sure we'll continue to tweak as we go on. I do incorporate lots of hands on, such as letter tiles to spell words for spelling, lapbooks for history and things like that.

 

Any advice for juggling multiple children with special challenges?

 

I only have the one, but I give big hugs to those that do.

[rieshy]

Would you share when, what, and how your DC was diagnosed with?

Our 6th and 7th children were born with a rare genetic disorder of metabolism. They have a Fatty Acid Oxidation Disorder but the exact one is not know- it is thought to be one near LCHAD that has not been isolated and named yet.

 

What flags were their prior?

My 6th child was unable to nurse at birth. He could latch on but not suck properly. He had difficulty maintaining body temp. He didn't gain weight and the label failure to thrive was discussed. He had to be fed extremely often, and small amounts. He was very, very, low energy and reached milestones slower than his siblings (but as his siblings all reached their milestones extraordinarily early this concern was poo-poohed)

 

After he weaned from night feedings at about 22 months he started waking up very early, too dizzy to walk straight.

 

In addition if you knew then what you know now, what would you have done differently?

I would say listen to your gut feelings. I knew something was not right but couldn't put my finger on it. He was slowly dying before my eyes but a regular trip to the pediatrician never showed anything- though she did begin to incorrectly suspect autism, because when his blood sugars start to drop some of his behaviors mimic autistic characteristics.

What's your advice to others with non typical children who haven't gotten a formal diagnosis yet and are still trying to put the pieces to the puzzle together?

Keep dated and written, coherent records of your observations including sleep/eat/activity. Be careful of presenting a doctor with your opinion of the correct diagnosis. You want your doctor to be brainstorming- not limiting their thinking.

 

Any advice for juggling multiple children with special challenges?

My greatest difficulty is dealing/teaching even though I'm chronically lacking adequate sleep. Also recurring and unplanned hospital stays can throw a wrench in our home school. One thing that has helped is that I keep an emergency schedule of school and chores to be done in the event that I'm in the hospital with one of my affected children.

[tonygirl]

I have 5 children 4 boys 1 girl and one on the way.

My ds is 10 yrs has brain damage, ADHD, Autism

My dd is almost 9 yr, ADHD, Dyslexia, dyscalclia, Dygraphia, Fine motor issues, traits of PDD (NOS)

My ds is 6 yrs Autism

My ds is almost 4 congenital nystagmus (very bad vision) Autism

My ds 16 months speech and language delay

Everyone of them have SID

My newest dd has glocoma from a cateract she was born with but man is she bright:lol:

[Quiver0f10]

My 11 yo Ds was diagnosed with dyslexia, ADHD (I don't agree with this diagnosis) poor working memory, gross and fine motor delays and a generalized seizure disorder as well as absence seizures.

 

As a baby I don't really remember any red flags. I guess the first indication that something wasn't right was with his articulation. We figured he just needed to mature and waited to evaluate. Knowing what I know now, I would have had him evaluated and receiving speech earlier. We started speech with him at 5 after a diagnosis of apraxia.

 

When he was 7 we moved to Arkansas and he was evaluated again and they said he didn't have apraxia but was simply needed articulation work. He has been in speech consistently since 5 and he has made improvements but he is still not where other 11 year olds are.

 

When he was 5 I started teaching him to read and we tried a few different approaches and I assumed he needed time. By the time he was 7 he still couldn't sound out C/V/C words. Everyone said boys are slower to read and that he would get it one day. I regret listening to this advice. Knowing what I know now, I'd have had him evaluated sooner and started a dyslexia program sooner.

 

We have been using Barton Reading and Spelling with him and it has been such a blessing! He is now reading and can sound out 3-4 syllable words. He isn't proficient and will probably always been a slow reader but with work he can do it. He also did 10 months of VT. Some people feel VT is a waste of time but I felt it helped him learn to read.

 

He has been receiving OT for 3.6 years and PT for a year and has made progress but he is still very behind in both gross and fine motor skills.

 

My biggest area of struggle is with his memory issues. We do a lot of review and that does help, but I wonder what else I should/could be doing?

 

It was 3-4 years ago when he started having seizures and was diagnosed with a generalized seizure disorder. He would have grand mal seizures during his sleep. He was put on lamictal. During a neuro-psych eval last year the doctor suggested that he might be having absence seizures as well. The neuro has upped his dose of lamictal a few times over the last year or two but I think that is in relation to his growth/weight gain.

 

He is having another neuro-psych eval in November because the doctor wasn't comfortable continuing the eval in process until we got his seizures under control. I hope to have a clearer picture of his issues and strengths so I can best help him.

Edited October 10, 2010 by Quiver0f10