Who else here has a child who is functionally 2+ years below their actual age level?

[rafiki]

.

[Mergath]

My dd is quite a bit younger, but she was drastically behind from two months old until a little after two years, and I had a lot of trouble accepting it. We'd go to the playground, and because of her motor and speech delays, kids several months younger than her would point at her and say, "Aww, look at the baby!" It was hard. I cried a lot. Everyone who asked her age and interacted with her would start lecturing me on how she needed to be evaluated, even though, of course, we already knew about her genetic disorder.

 

My dd has always been on the small side, too, and when I would let people assume she was younger, than I was plagued with guilt and felt like I was ashamed of her or something.

 

I don't know that there's an easy answer. My dd has caught up in some areas and is still behind in others. Most 18 month olds can run better than my dd, and because of her muscle tone, she is virtually unintelligible to everyone but me, my dh, and a close family friend. Even now, I have strangers come up to me and ask, "Is something wrong with her?" Some days it makes me sad, other days I don't think about it.

 

I try to accept that she may never be "normal," but it's hard. We have a lot of hsing requirements here in MN, and if the local school district ever gives me a hard time about her progress when she's older, I plan to just say, "Here's her diagnosis, here's the number for our family doctor, our developmental pediatrician, and our geneticist. If you have any questions about why she's behind, feel free to call them."

[ravinlunachick]

I'm no help at all with the homeschooling aspects, as my son attends public school. However, he is 2 years behind his chronological age when it comes to many tests and evaluations. His expressive speech is still below the 12 months level, and he'll be 5 in January. He is also a little on the small side, and that does make it easier.

 

I did struggle mightily for a long time, and we even quit hanging out with some friends of ours who had a daughter just a few months older than my son, because it tore me up emotionally to be around her. I'd go over there, perfectly happy and content, and it seemed like all she did was shine a big ol' million watt spotlight on my son's deficits. :(

 

Just before he was diagnosed with ASD, I came to see that he just was who he was, and all the labels in the world weren't going to change that. I suddenly saw it the same way as I would if he were deaf or diabetic; we would simply adjust and accept those, so we could do the same for his struggles (autism and apraxia with SPD).

[VinNY]

Mine! SHe is 10 years old and working at the end of a 2nd grade level. She struggles with abstract thought, she is language impaired and dyspraxic. I have an IEP with my school district and receive services. For me, I had to report and dreaded it. Well I had outside evaluations done, then used the PS evaluations. It helped I had older homeschooled and private schooled kids doing well. Once you have an IEP, it is very freeing. It entitles you to modify lessons and testing. I was able to get services through the PS. Depends where you live, but sometimes private is better than PS and sometimes PS is comparable. In my case it is comparable. I also get the help of a special ed teacher. This teacher in particular helped me cope the best with my need to "fix" my dtr. She herself has a 34 year old son with severe delays.

 

My dtr is making slow progress and is happy. I try not to compare but.... I spent the weekend with another family. She had a 10 year old daughter. I forgot what a typical 10 year old girl sounded and acted like. So that was tough coming home to my dtr again...but I am her world and she needs to see that I love her for her! I taught a 2nd grade religion class yesterday, and was amazed by all the 7 year olds reading beautifully, I forgot what that was all about,too (even though all my older children were early readers). But I came home, and worked with my dtr and praised her reading and helped her spell was and want and you for the millionth time:).

[littleWMN]

Me. My 5.5 year old dd is on a 2.5-3 year old level. She's not homeschooled but I deal with all the same emotions. She has a chromosome disorder and will not outgrow it. It's hard.

[chiguirre]

I feel like I should give in and talk with the district, but we've been trying to keep them out of our business.

 

WWYD?

 

 

 

Both of mine are at least 2 years behind. For my oldest, it's no issue at all. His language is so impaired that his special needs are obvious. He goes to private school so I don't have to try to teach him academics or wonder if his delays are my fault.

 

Ds2 is a different story. He's 10 and works at about a 2nd grade level on the 3Rs. His general knowledge is pretty good, so most people don't realize how severe his delays are unless they see his written work. BUT, his test results to qualify for school district services were abysmal. They reported an IQ of 50, which gives me a free pass as far as expectations go. I can't imagine the ISD questioning his level of achievement with that in his record. Of course, I can't send him to school either, because they would set their expectations based on that score.

 

I'm stressing over this year's testing because I'm worried they'll come back and say his IQ is really 80 (which is more in line with my actual experience, but would mess up his chances of qualifying for disability services as an adult). We'll see what happens. In any case, there's no use worrying about it. We have to keep on chugging and hope that he'll have the basic skills he needs to keep a job as an adult. If not, I hope he'll score low enough on the testing to qualify for assistance. I wish I had a better grip on his prognosis. In many ways, ds1 is far less stressful to parent than ds2 because we know what to expect long term.

 

Finally, I have my nt, bright dd. Since I haven't messed up her academics or social skills, I must not be that bad at this hs gig. ;)

[ElizabethAnne]

I too have a ten-year-old who is more than two years behind grade-level.

 

I pretty much lurk here, and I've never really introduced myself. I have empathy, but not many answers, as I am struggling too.

 

My ten-year-old son was oxygen-deprived during a severe illness at birth. To talk to him, you wouldn't realize he has issues. Just a little shy. But put him in an academic setting or anyplace where there are heightened expectations and directions to follow (organized sports, for example), and his deficits become immediately clear.

 

When he met all his early milestones (smiling, crawling, walking, etc.) we thought all was well. But the late talking was our first cue that something was wrong... From there, memory issues surfaced, and schooling has been a challenge since day one.

 

He should be in fifth grade. He operates around a mid-second grade level in the three R's. After being labeled "severely dyslexic" for several years, we finally had testing done this summer at a clinic for those with brain injuries. They were able to confirm for us, after a full day of intensive testing, that this is not dyslexia (or dyscalculia), but a brain injury which has resulted in the following:

 

• extremely deficient working memory
  
• visual processing problems
  
• ADHD
  
• executive decision-making problems
  
• and much more
  

 

 

His IQ is borderline "impaired," although his reading scores are "higher than expected," due presumably to the intensivity with which we and his reading tutor have been working with him. His math scores are abysmal, and his memory is incredibly poor. He has a digit span of 3.5. Ouch.

 

To date, in addition to homeschooling, we have done outside reading tutoring, using the Orton-Gillingham method, and we've done some software at home such as Brainware Safari and Memory Challenge. We own Audiblox, but haven't put it to good use yet. We have not gone down the meds route yet, but we are looking into that soon. I am currently investigating what more we should be doing for him. I am a little lost on what to do next. Someone mentioned a naturopath and biofeedback and possible supplements. I should check that out.

 

I don't have answers for you, but I share your concerns regarding a child who appears to his parents to have so much potential, but is so behind where he or she "should" be age-wise. It's hard! In our case, he won't outgrow this (it's a brain injury) but I am still hopeful that with neuroplasticity of brain cells, new connections can be made and some of this can be overcome. I pray that is the case. Now that he's ten years old, I feel like it's getting harder to just say "he'll get it, eventually..." The deficits seem magnified now, and I think that while he clearly progresses each year, his rate of academic growth is so slow that the disparity between his "expected" grade and his "actual" grade is growing larger.

 

All I can say is, I'm here struggling with this too! At least we can know we're in this boat together, even if I'm not a wealth of resources at this point.

 

Elizabeth

[Dobela]

Me. My 5.5 year old dd is on a 2.5-3 year old level. She's not homeschooled but I deal with all the same emotions. She has a chromosome disorder and will not outgrow it. It's hard.

My son is academically 2 years behind. Some days I just cry. As my daughter continues evals we are learning that she most likely will always be behind as well. I can deal with it just fine day to day, but when I start looking at the long term, it can really depress me. It is just hard.

 

My brother will be 40 next year. He is high functioning autistic they say, but he isn't able to support himself. My mom really struggles with it all still. It is just a different struggle than when he was in school.

[freeindeed]

My dd3 is adopted from China. She is visually impaired. She has a condition known as Peter's Anomaly, which can be genetic & a stand-alone problem, or it can be part of a broader range of problems including mental retardation, or it can be caused by fetal alcohol syndrome. Since she was almost 2 when we adopted her & of course we have no idea about her birth circumstances or biological mother's habits, we just don't know exactly what our little one may have. She is about 2 years behind in development. She can walk now, but she doesn't talk much yet. She knows a few words, but she mostly sings songs. She LOVES music, and she can memorize a song after only hearing it a couple of times. We have some suspicion that she may have a form of autism, but then again it's hard to tell if that's the case or if her delays are due to her vision impairment and the fact that she was institutionalized and severely neglected in her orphanage. I do have a hard time dealing with it some days. It's a lonely feeling b/c I don't have any IRL friends with special needs children.

[Kile529]

I have a special needs ds 7 who is also significantly behind. We're still working on preschool...and it's just not sticking. My ds was diagnosed failure to thrive at 13months. He couldnt gain any weight. We went for a few years of testing and then a trip to the Mayo Clinic for 3 weeks of testing. I was yelled at by the genetisist that I was ignoring his developmental (speech at that time) delay...while I was trying to just get him to survive. They sent us home saying something was definitely wrong, but they didn't know what it was. Took some time off and just found out this week that his adrenal & pituitary glands are barely functioning. It took going to a homeopathic chiropractor to run a hormone test. So....we've been in your shoes for the past 6 years. Ive cried...a LOT. He's the size of a 5 year old...acts like one too. I'm hopeful the new supplements will work. I was also given supplements for memory, speech, etc. Maybe it's worth a shot finding a good & reputable homeopathic dr. In your area? DS has been able to do 4-step directions a couple times in the last week....we've been working on 3-step for the past 2 years and he just wasn't remembering 3steps! DS is on Iodine and Nuclezyme for his speech and memory from Biotics Research...(and 5 others). I hope this helps....I'm definitely very very new to the homeopathic side...and still love the modern medicine side too. While I have trusted God it has been such a difficult road. For the first time in 6 years....I have a glimmer of hope. Never knew there were supplements to help with speech and memory.....wow.

[dtsmamtj]

You are not alone - I too can relate.:grouphug:

 

T

[Misty]

I do! My 8yr old is at least two years behind across the board (academically, socially, emotionally). She has a lot of learning issues and she really needs that vision therapy that I've been dreaming of for the past year or so.

[butterflymommy]

I have a 6 year old who is academically and emotionally/ socially/ linguistically delayed a good 2 years. My main conflict is whether I should be pushing her or letting her develop at her own pace. She seems to do decently with math, for instance, she can count to maybe 15 and understand what addition means, but she acts like a toddler when it comes to trying to get her to hold a pencil, sit still, and so on. She really can't write or read at all, even tracing is hard for her.

 

My oldest was also severely linguistically delayed but he did catch up, however he never had any real academic delays. He could read fluently before he could talk and still reads voraciously. I often wonder if we should have kept our daughter in special ed, maybe she would be better off? I honestly don't know!

[tlshive]

I can really relate to all of you and wish you were closer for playdates. Our dd7 was adopted at 11 months and was delayed from the beginning. We were dreamy eyed parents and didn't realize it was anything serious right away. She continues to be about 2-3 years behind on most levels. Sometimes I really think there is more in her little brain that her body won't allow to come out. We have done special services through the public school. She received services for two years in preschool and then she was in kindergarten for two years. During that time, we had some great specialists and therapists and some pretty irresponsible ones as well. She was extremely overwhelmed in school with all the transitions, the close quarters with other students, being treated like she was so much younger, and teachers who really were at a loss at how to teach and discipline her. We wanted this to work and I didn't think I could homeschool her, but the more I had to explain to the multiple staff members that she encountered on a daily basis, her world, the way she learns best, that gum might be helpful, that she gets aggressive in tight quarters, etc. I realized that maybe home would be a better place. She would come home from school completely worn out and didn't have the words to express what was going on so she would melt down. Anyway, all that to say, we pulled her out last January and she is a much more peaceful child. She is making strides. I don't know what the future holds, but I am seeing her speech develop into more clear sentences and she read her first little book this week. (I am Sam.)

 

My one advice would be to never make excuses for your child. Don't justify their behavior to those around you because of their delays - you know best and you are their best advocate. Be their voice! I have many regrets of things I've said in front of her, or things I should have said to others in defense for her and I feel like she picks up on those things and so do those around her. She was painted as the bad kid for such a long time and I need to change that and be her biggest fan no matter where she falls on the developmental scale.... It continues to be a struggle. We battle a lot, but I have missed opportunities to protect her, to defend her and to speak on her behalf and I don't want to make that mistake again.

[happycc]

has always been 2 years behind. He had seizures as a baby.

He takes three kinds of medication. He was diagnosed bipolar, tourettes, pddnos etc.

He is currently in high school mainstreamed with a bunch of sophomores.

 

Last year was tough. He tried to hang himself saying no one likes him etc.

 

He hates school. He hates to read.

 

We homeschooled until he was 10yrs old. He struggled in school. He takes everything very literally. Very little was known about PDD-NOS and the teachers know very little as they get older know ever less or don;t seem to care either. I have tried desperately to get him services through the school district but they never gave him any. He has always scored relatively well on Star testing but it was the day to day stuff such as organization, social stuff, time management and his emotional self that made it difficult. I was so surprised he finished 8th grade.

 

Homeschooling him was hard. He didnt want to feel different. Homeschooling made him feel different on top of being behind two year in everything.

 

He cried easily and was very emotional. He had rages. He would run into the bathroom and call me crying and telling me to come pick him up asap.

 

Anyways he says he likes high school better than elementary/middle school.

More people, more friends. Most of the kids he hangs out are on the spectrum too. At this point he would rather be in school than be homeschooled.

 

The worst part of it all is that my son is HUGE. SInce he was 10-11 yrs he was tall for his age and big and burly and always looking older than he really was and then you added in academic and emotionally immature two yrs delay..it was a mess.

 

I am just glad that today my son is alive. He did get his drivers license. He is still in high school and he goes to church. He has dated a lot already (against my wishes), got dumped a lot but has not kissed a girl yet.

 

The only thing that motivated this child from 6th grade to freshman year has been football. But he was just diagnosed with congenital cervical stenosis and spinal biffida oculta and was told never to play contact sports again.

 

My heart continues to break for him. I cannot tell you how many times I have cried and been depressed. He will be 20yrs old by the time he graduates from high school.

 

 

He is bright but slow and has to work hard for everything.

[mommyrooch]

:grouphug: You are not alone. My dd is 10 and right at a second grade level in the 3R's. It seems like there are several of us here in that boat.

 

My daughter has always struggled. She dreams of being a Vet someday and it breaks my heart to think that she may not get there. Don't get me wrong. I am NOT and will NEVER give up on her. I will help her reach her dreams in any way I can. It just really makes me sad when I start thinking that no matter what we do or how hard we try, she still may never get there. That's a tough pill for any parent to swallow. We all want the best for our kids.

 

Only time will tell for my dd. In the mean time, I will continue being her strongest supporter and her biggest fan. I will do everything in my power to help her. The rest is in God's hands.

 

:grouphug:

[IsabelC]

Yes, it is tough. I think we all start out assuming our children will be gifted, or at least average. Finding out that your child has any kind of disability or developmental delay has a big impact, most of us actually go through a process of mourning as we grieve for the normal child we haven't got, before we can move on and be truly thankful and delighted with the child we do have.

And yes, as parents, we're used to taking everything about our kids personally!

I think that as he gets older, it will get both easier and more difficult. More difficult because you'll have people trying to interfere and more hoops to jump through. But easier because you'll have more experience, both of facilitating his learning and of dealing with the authorities. And I do think it's very much worth the effort that you're putting in to ensure he is allowed to progress at his own pace.

Have you discussed with anyone how your district requirements work for children with developmental delays? Surely they won't be expecting him to be 'on grade level' given that you have evidence of his learning difficulties? Since he is thriving with 'alternative methods', it's important to avoid having him forced to follow some arbitrary standard set by somebody else, if at all possible.

 

Do they ever catch up? Maybe. Your ds might end up at the same level as his peers, but a couple of years later. Or he might not quite be able to get there. But whatever the case, your loving involvement in all aspects of his education is going to give him the chance to reach his full potential.

 

My son was diagnosed with Aspergers, but I'm not sure that really fits him exactly. His biggest disability is in social development, where he is functioning years below his age. His academic skills are quite splintered, with some areas where he is behind, and other areas where he's average or even above average. Unfortunately he is very tall and usually taken to be 2-3 years older than he is, often resulting in zero tolerance for his poor social skills where strangers are concerned.

I still find it hard at times to deal with having a child who doesn't develop 'normally', particularly when others claim (or insinuate) that his lack of social development is caused by me not sending him to school! 95% of the time I'm happy to be with him, thankful he is healthy and in awe of what he does and how he thinks. But I still sometimes get frustrated at things he can't do, or react over-sensitively to things I hear of and see other children doing. (Eg somebody I know posted that her child "is having a sleepover with one of her friends, because that's what 8yos do" and I spent half of the next week crying because my 8yo has never had a friend, and isn't likely to be invited for a sleepover.)

 

You just have to keep being strong as his advocate. Making sure that he isn't expected to do more that he is capable of, of course, but also ensuring that he is never written off as less capable than he is. That is a big reason my son isn't in school: because I'm almost sure they would assume he can't do much, and not push him. (I don't mean push him as in exert harsh pressure, but pushing him as in expressing confidence that he can learn, and trying different strategies until something works.)

Edited October 3, 2011 by Hotdrink

[gracyomalley]

Hang in there! I am lucky, my SN kid, although he does have severe Language based LDs and a few years ago his anxiety and social differences certainly fit "spectrum" diagnosis, he also is blessed with some real gifts which keep us going when he still can't spell "when".... (so I'd say about 4 years behind in those areas...)

 

I have to remember that that's not going away...but I do see him blossoming in other areas. Some would say I have "hothoused" him. He is an 11 year old "official" 5th grader, and that makes him 6 monthes older than kids he compares himselves to. He has homeschooled since 1st grade...so he never sat in a classroom and saw how easy it all was for others. I have allowed him to pour time and money into building up his gifts, while spending a great deal to help with tutoring for his difficulties. He often practices his violin 2 hours, and doesn't do his writing...but that's what feeds him, and we all need to know who we are, so we can deal with our difficulties. He realizes now that he isn't as good at some things as other kids, but he also sees the things he CAN do, now...

 

I cried a lot after he spent a whole season playing little league without talking to the other kids, and couldn't take swim lessons with other kids because it was too overwhelming...and am sad that now, at 11 when he's "ready" to be out there socially, its too late to really do some of those things.

 

My middle brother struggled through high school with LDs. He still struggles. He is unemployed, married to a manipulative, addicted wife who leaves him at home to take care of the 2 kids while she hangs out with her other, often male, friends. He doesn't see what she is like, and drove her all over the state to get treatments for imaginary diseases, driving up medical bills that now have them so deep in debt, that he'll never get out. He has lost jobs not because he didn't do what he was told, show up, etc, but because he missed some critical aspect. He can't deal well with consequences, seems to repeat the same "mistakes" over and over....and he's 41. My parents still struggle with how to help, and what is his responsibility to deal with. He was one of those "low average IQ with non-specific LDs" kids...He looks and acts basically normal, but socially, is about at an early 20s level....and that doesn't make him do well with complex, difficult decisions!!! He is loving and loyal, actually a relatively good parent, and would do great in a more traditional society (perfect assembly line worker, bring home paycheck, etc...) with a different "life partner"....but his choices, and his low self-esteem led him to where he is.

 

We all hope for our kids to be "fixed". In my family, where practically everyone is gifted (brother above is adopted), even my son's LD feels like a glaring deficiency....his cousin was visiting this weekend (who is 8 and reading Harry Potter for fun), and trying to explain to the cousin why ds was doing 2nd grade spelling was difficult...and interestingly enough, cousin had never noticed ds's struggles...

 

I can only say that each person is so very different, and we all have great potential to be our best....my brother would be in a very different place if somehow as a child he had come to know his strengths and build on them, instead of just fighting with his weaknesses!!! Even if that strength is just being good at loving his family and following directions. I wish we were better at making a place for each person in our world!

 

Not everyone is meant to be great at academics. Even children with severe disabilities can be happy and loved...and they give us all a huge gift. Homeschooling allows us to look at the whole person, but it also allows us to get tunnel vision and feel that we are in control. We are NOT!!!!

 

Erin

[mchel210]

Mine is working at 11yo level but he is 15. It is hard. I realized ...just recently...I cant have him work alone. I have to sit and just go over the assignments and HW and he does very well! I cant give him an assignment and expect it to be finished. My parents keep telling me to keep being strong are realize he can graduate and take a few years off before college and hopefully mature. That way he will be more on level.

 

Yesterday I quizzed him on History and he did awesome! He memorized everything and gave it all back orally. He can remember everything it is just writing it down! That is our biggest struggle.

[Guest lemonheadsfan37]

Do not despair on those hard days. i want to share my message of hope. For many years my only child girl was "at least 2 years behind her peers" (words of many teachers). This last 18 months, we have seen miracle-levels of positive change. My husband and i are slowly becoming quite astounded. Here's our story-

Our now 16 year old girl seemed normal as a baby and toddler, but her speech was slow to develop so we arranged part-time kindergarden at age 3, and paid for sessions with a private speech therapist. i was first called in for a school meeting by concerned class teacher in first grade. Teacher said she was a lovely, well-behaved girl, but seemed younger than her peers with a slow learning pace in all areas and uncoordinated in the gym. We continued to provide an enriched environment with lots of learning experiences, tons of normal love n attention, stable home environment and lots of after-school help with homework. I continued to work only part-time to spend more quality time with my girl. We hoped for the best.

At age 7, school called in an educational psychologist to assess her. Wechler Test IQ scores were 84 and 73. no composite score possible coz large discrepancy between the 2 scores. EP arranged pull-out classes of extra remedial help at school. The UK is more backward than USA, so no one suggested OT and we were shamefully ignorant (with hindsight).

Over the next 6 years- nothing really changed. Same little girl. same school remedial help. same home environment, same teachers reports. We worried lots and i often cried in private. i watched friends' kids learn stuff incidentally. My girl needed a lot of explicit instruction to learn everything- daily living stuff, not just school stuff. Ensuring her safety seemed like a full-time job. When she entered senior school at age 12, she didn't have the quick wise-talk of most of her peers, and was bullied by other girls. She is a very attractive-looking girl which may have partly been a factor in the bullying. Her pastoral-care teacher called her a sweet girl who was quite vulnerable. After a physical beating towards the end of her first senior school year, we opted for home-schooling. Academically it was better since she could learn at her own pace. But she became a little isolated socially. Constant review of academic material and slow progress frustrated me till I lost patience. I wanted the role of just mum back- not full-time teacher/mum. I felt like a failure as a parent. We couldn't afford private school, so tried internet high school and it has been fantastic. I found suggestions of alternative remedial help on internet and opted for 18 months of daily - and i mean daily- interventions. All concurrently. "10 Gems for the Brain" movement program designed to inhibit retained primary reflexes. Balametrics vestibular training from Learning Breakthrough. Fish oil and lecithin dietary supplements. I was privately hopeful. My husband was skeptical but supportive. We noticed changes after around 8 months. Kept going for a further 10 months. The changes crept up. Continued - and continued. Her speech became more articulate. Her vocabulary expanded. Her handwriting began to look normal. She could play sports without embarrassing herself. Her working memory sharpened. She began managing her homework without needing help. She became more organized and "together" generally. My husband lost his scepticism. Our girl began to feel "more clear-headed" herself, so motivated herself to do the activities without nagging.

Brainskills phonological awareness training (free) and Ruth Miskin's Fresh Start synthetic phonics program have greatly improved her reading/spelling. Reflex Math and Help Math are helping her catch up with math.

The situation now- she is reading and writing at grade level and mastering normal curriculum material fast. Leaps and bounds fast. In short- this tranformed girl is now really able to learn. She seems much more mature in discussions and is making friends these days. She seems comfortable rather than clumsy in her own body. She is fast seeming "normal" (for want of a better word). I am sorry I do not know many technical terms. My head swims when I see jargon like auditory processing disorder, cognitive deficits etc. I wish she had been properly assessed and helped when she was at elementary school. So much of her struggle could have been mitigated. It makes me sad. I don't know the specific labels although I know my girl had many problems. But these changes are definately real and noticeable. For the first time in years I am daring to feel positive about the future..maybe perhaps exam passes? She talks of a career as a police officer or a kindergarden teacher and I'm starting to believe possible. The changes have crept up gradually but are genuinely astounding. Next we will do Interactive Metronome Home and Ideachain. This summer, we'll try audiblox and probably TLP. I will do weekend work shifts to save the money.

My advice to other parents. Don't waste too much time helping conventionally with "normal" schoolwork. Time spent trying alternative methods to address underlying ability-to-learn issues is time well-spent. I just wish I'd discovered forums like this one years ago. Sorry for the long post. Hope it offers some comfort. I spent years feeling that I was alone. Being too ashamed to talk to grandparents who asked about our girl's school report. Blaming myself. I laughed with my brother when he joked about my girl wearing velcro-fastening sneakers and being unable to ride a bicycle. Inside I cried. I knew there were other parents out there with even more serious problems, but that only consoled a little. We live in a less than enlightened world where being different often means suffering prejudice. My girl's classmates used to say "oh no. Please miss. We don't want her in our netball team". Thoughtless taunts hurt my girl's self esteem badly. Thankfully, society is changing for the better in this regard. Dig deep inside for needed courage and keep holding onto your little family.

[Gingerbread Mama]

I have a special needs ds 7 who is also significantly behind. We're still working on preschool...and it's just not sticking. My ds was diagnosed failure to thrive at 13months. He couldnt gain any weight. We went for a few years of testing and then a trip to the Mayo Clinic for 3 weeks of testing. I was yelled at by the genetisist that I was ignoring his developmental (speech at that time) delay...while I was trying to just get him to survive. They sent us home saying something was definitely wrong, but they didn't know what it was. Took some time off and just found out this week that his adrenal & pituitary glands are barely functioning. It took going to a homeopathic chiropractor to run a hormone test. So....we've been in your shoes for the past 6 years. Ive cried...a LOT. He's the size of a 5 year old...acts like one too. I'm hopeful the new supplements will work. I was also given supplements for memory, speech, etc. Maybe it's worth a shot finding a good & reputable homeopathic dr. In your area? DS has been able to do 4-step directions a couple times in the last week....we've been working on 3-step for the past 2 years and he just wasn't remembering 3steps! DS is on Iodine and Nuclezyme for his speech and memory from Biotics Research...(and 5 others). I hope this helps....I'm definitely very very new to the homeopathic side...and still love the modern medicine side too. While I have trusted God it has been such a difficult road. For the first time in 6 years....I have a glimmer of hope. Never knew there were supplements to help with speech and memory.....wow.

 

This is interesting. It could have been written about my DS8... So I wonder where I start with trying to find a homeopathic chiropractor? Or is the chiropractor part even necessary (I didn't see that the above child was having adjustments, but it just might not have been mentioned.) I *can* find a homeopathic dr within an hours drive of here - about as good as it's going to get, distance wise. I am assuming our insurance will be useless with homeopathics :glare:, is it terribly expensive?

[PrincessAriel]

nt

[AmyontheFarm]

When my son was in the special needs preschool program at the local Regional Children's Center, we had a councilor assigned to help us as parents emotionally accept our son's diagnosis. It was standard practice.

 

I told the woman that because we didn't have a clear diagnosis that I felt like I was standing in a dark room with a baseball bat trying to fight off a tiger. If I could just "see" the diagnosis then I could fight.

 

Now, my son is 11. The dark room was a tiny light we know that he has global delays that affect him cognitively and physically, and I've come to terms that I will never have the room fully light up. Just like my son has to use his other senses to survive in life, I have to close my eyes and just listen carefully to the tiger's steps and trust God to let me know when to swing and when not to swing.

 

It is tiring at times, but I loving coming here, because here I feel normal! :001_smile:

[LostSurprise]

My 7 year old has the abilities of a 4-5 year old. In some ways it was harder before we got the diagnosis because it seemed I was the only one who saw the deficits. Teachers, friends, put me off a lot. Now, its hard because there's no clear path to help him improve.

 

He is smaller then his age group due to a special diet. I'm usually glad for that. He often gets taken for 4 or 5. He has severe epilepsy.

Edited April 10, 2012 by LostSurprise

[mommy5]

My soon to be "4th grader" is still working at a kindergarten level. He is autistic -- low/mod functioning based on cognitive testing ... it has been hard. I know it is not "my fault" as a teacher or anything like that but as his mom it has been a struggle. We are working on reading skills and basic math skills. ETA: It seems like a lot of us have said that our child is smaller than their age ... mine is too ... we've taken him to several doctors for low weight gain issues (and height issues) ... he looks like he is about 3-4 yrs younger than he is. Just thought that was interesting... I also agree that it was much harder for me before we got the diagnosis. Now that I know a little bit more of what we are dealing with (both academically, physically and behaviorally) we can and are getting help for him.

Edited April 10, 2012 by mommy5

[wy_kid_wrangler04]

I realize this was an old thread that has been resurrected but since then we have found out how similar our sons are :grouphug: One thing I notice is my son is VERY tall for his age but very very thin. (you can count every single bone in his back, ribs, neck and shoulders-- even the super super tiny ones) Dh and I are tall as well though (he 6'3" and I am 5'10") It is really, really hard with ds being about 2-3 years behind but being the height of a child 2-3 years older than he. He is taller than some 11 year olds we know and he is only 7 but functionally 4-5. It is really hard because of all the stares and assumptions we get. Then when people find out we homeschool I really feel the need to explain. In our area homeschooling is looked at as a huge detriment socially then to see my son without understanding him--- well, lets just say its not a good thing :001_huh:

[IsabelC]

One thing I notice is my son is VERY tall for his age but very very thin. (you can count every single bone in his back, ribs, neck and shoulders-- even the super super tiny ones) Dh and I are tall as well though (he 6'3" and I am 5'10") It is really, really hard with ds being about 2-3 years behind but being the height of a child 2-3 years older than he. He is taller than some 11 year olds we know and he is only 7 but functionally 4-5. It is really hard because of all the stares and assumptions we get. Then when people find out we homeschool I really feel the need to explain. In our area homeschooling is looked at as a huge detriment socially then to see my son without understanding him--- well, lets just say its not a good thing :001_huh:

 

:grouphug: I hear you. We are in exactly that kind of situation with our son.

[beck]

Since this thread's been resurrected I'll chime in too. Both of my younger sons are 2 years behind in some areas.

 

My 8 yr old came to us severely developmentally delayed at just about 3 yrs old. Though he's made tremendous progress he is still only just beginning to read (& has been an emerging reader for the last 2 yrs) and is 6-12 months behind in math. Since beginning homeschooling at the beginning of this year though his anxiety, OCD, and attachment related behaviors have gotten soooo much better though. His maturity and other skills are fairly typical, but I suspect that academic learning will always be a challenge for him.

 

My 6 year old was recently diagnosed with Fetal Alcohol Syndrome. When he came to us at 4, speech and some emotional/behavioral things were really his only issues, but as he's gotten older the gap between him and same aged peers has gotten wider. It does help that he's small for his age, but I hate thinking about how the gap between him & peers will continue to get wider as he grows. Right now looking 5 and acting 3-4 isn't a huge deal. When he's 16 (even if he looks a little younger) and acts 8 it will be much less fun.

 

It's awfully hard when all of my gifted friends talk about the wonderful things that their gifted children are learning/doing/reading. With my older set of kids I would have been right there with them, but teaching my younger boys is so completely different. I hate when they try to offer me advice on how I can get my boys reading more....grrr. I try to remember that they mean well.

[kayben]

I rarely post here, but this thread has actually helped me so much. If nothing else, I realize there are so many others out there who are experiencing similar struggles. I have just recently come to peace (sort of) that Cassie is not going to "catch up" every year I try to push her instead of peacefully recognizing she is not going to jump 3 or 4 grade levels and reach her peers. She will be 10 in Aug. I kept her back in K and so she is a 3rd grader (public school wanted her in with her peers which would have her is 4th) This is our 4th year in K math. She cannot answer "what is 2 +3 without significant patience and discussion. Here is how it goes typically... "Cassie.... honey.... if you have 2 apples and then I give you 3 more ... how many will you have?" ... No.. hold up 2 fingers.. now here is my hand with three more. Let's put them together.... you get the idea... ugh! Year after year after year! She can actually read on grade level. Socially she is annoying to all around her. She is in everyones personal space, eats with her hands, smells everything...etc. We have no diagnosis for her academic troubles or her social graces. She is also small.. she weighs 42lbs at almost 10 years old. And as another poster commented, she has never been invited to a sleepover. Her sisters, both older and younger are invited to parties on a regular basis.. not Cassie. So so sad. And unfortunately her siblings are not her best supporters. WE are working on this. She was severely failure to thrive. 11 lbs at 8 months. Has multi cystic dysplastic kidney disease (had one removed at 2 years old) Has a fatty oxidation disorder called SCAD, and has recently been diagnosed with Pectus Carinatum. All of these things are supposedly unrelated, have nothing to do with her weight or her learning. And the pectus carinatum just seems like a cruel joke as it is just a cosmetic problem of a severely protruding breastbone. just what she needs!

Anyway. Thank you for this thread. I am not alone, and neither is she. Wish we could all meet at the park!! I will pray for you all. And your sweet children. They are a gift from God. They do not have to be academically gifted in any way to reach others for the kingdom. So maybe our focus can be teaching them of Christ's love and how to unashamedly tell others about it. He uses all things for good. God bless you all.!

[akalori]

I'm in this club too. DS9 has dyslexia and ADD inattentive type. His working memory and processing speed are very low. He has been about 2 yrs behind in math and reading, and further behind in writing. He also has gross motor and fine motor issues. However he did make great strides this year. He is having some private testing done at the end of May. I'm eager to get unbiased evaluation of his skills. It would be great if he is finally closing the gap a bit rather than falling even further behind his peers. I'm very proud of his efforts, empathy for others, and overall behavior. But I worry about his future and self esteem.

[faithfulmama]

I'm here with you all. My DS7 has ADD inattentive, dyslexia, sensory issues, expressive language delays, memory issues ? still working on the whole picture, and is about 2 years behind his peers in most areas. As my 4 year old is maturing and developing, it is becoming more obvious to me how behind my older son is. Really I think I've just begun to accept it in the last 6 months, even though it has probably been clear to others for some time.

 

Like the previous poster, we are having more testing done in may, and have just begun speech and ot. I'm hoping that with the extra help we can start to close the gap, but it is a lingering fear that it will continue to widen, or just maintain, and his brother and close cousins who have been his lifelong playmates will outgrow him.

 

I haven't posted much on this board, but this group has been a huge source of support to me, and probably the sole reason that I have been able to see and come to terms with my sons differences. In fact, it may have been this very thread on the first go round that caught my eye here! So thanks to all of you for sharing your experiences!

[rafiki]

.

[Gisele Marie]

I so appreciate the honesty in this group! It IS hard and there are days I battle fear as to what the future holds. We are learning after a decade of therapies and doctors that even if our daughter never functions on grade level- we want to enjoy her and the privilege of learning together!

 

Thank you everyone for posting. I wish I had found this forum 10 years ago!!

 

Gisele

[Celia]

So happy to have found this board. I was having one of those evening of crying fits, while worrying over my son's future. I'm so sorry others have to go through the same difficulties, but its a relief not to be alone!

[freeindeed]

I, too, am thankful for this board and this thread. We are currently in the midst of various tests, procedures, etc. to get a complete diagnosis on our youngest. It is truly helpful to know I'm not alone.:grouphug:

[hsbaby]

Despite being old, this thread came at the perfect time. My dd is 15 and functions socially and academically at a second grade level. In early elementary she was only a year or two behind. As she has gotten older, the gap continues to increase. I have finally realized that pushing academics with her is pointless. I think she has reached the peak of her capabilities. Next year I will put more focus on life skills. You can only do second grade math for so many years before realizing that they are just not capable of the work. It has been a hard reality check for me. I often struggle knowing she will never live independently. I feel bad for her and, honestly, for me and my husband. It's going to be a long, hard road for everyone:(

[funnygirl]

Hugs to you hsbaby, and to all of us as we deal with the daily challenges and heartbreak of parenting children with special needs.

[Gisele Marie]

My girlie, also adopted, is 14 and is about 6 grades behind. 68/70 IQ, dyslexia, auditory processing delays etc. When she was younger her delays were more severe and over time many of the issues improved- but there have been a few issues that remain unchanged for the most part. I would encourage you to keep networking! Thru networking we learned about hippo therapy, a wonderful OT and speech therapist. Recently we took our daughter to the Brain Balance in our area. We saw wonderful changes- in certain areas. Each therapy seems to remove a layer here and there!

You are not alone!

Gisele

[hsbaby]

Hugs to you hsbaby, and to all of us as we deal with the daily challenges and heartbreak of parenting children with special needs.

 

Thank you! I wish I had people closer to me that could relate! And absolutely, :grouphug: to everyone here that has a child with special needs. Every day is both q blessing and a challenge with these special kiddos!