I know there are many camps for special needs families. We are in maine and there are a couple here. The only one I know the name of that is national is a Christian program from Joni and friends. I am sure if you google special needs family camps you can find others in the northeast. Just a though if a camping experience would be of interest.http://www.joniandfriends.org/family-retreats/

Thanks ladies!

My DS is 11 with ID (last full scale IQ of 40), apraxia of speech, severe fine & gross motor delay. I started him on phonics programs, he was able to learn all of the letter sounds but as soon as we got to blending with more then 3 letters or 2 sounds he hit a wall. He actually learned his letter sounds from leap frog talking letter factory videos and flashcards. We tried the following Phonics programs and each one failed: Teach your child to read in 100 easy lessons, explode the code, hooked on phonics, rod and staff, click N Kids, and Reading Bear(this was most successful). Though it would seem from the above yourself and others would consider it a "failure or giving up" of sorts we have moved to the sight word program Edmark and he is finally learning some words, instead of getting nowhere like he was. I would take from your screen name you are from maine?? We are as well, do you have SN kids of your own? Would love to see any results you compile!

Thank you all so much for the feedback. I will certainley look into and research all of your suggestions. Sezuires could be possible as there was a time a few years ago we questioned if he was havig them as he was having alot of blank staring sessions?? Certainley worth considering. I was not familiar with PANDAS and am looking into it as well. I guess I never thought of pure tourettes but after reading the article some of that fits as well. It is quite hard watching them suffer. I always thought watching him struggle so much to learn academics, or to write letters, or to ride a bike, or to talk was so hard.....I would rather watch those things every day then to see him struggle and be upset within him self and to hurt emotionally.........oh the lessons we learn on this journey! Thank you dear mothers for your time!

OK ladies looking for thoughts.....DS 10 1/2 ( moderate Intellectual disabled, apraxia, fine & gross motor <1%, sensory issues.....much likea 4yr old) is displaying more repetitive behaviors and general unhappiness . I am at a loss for what to do and trying to figure out if they are just stims (though he is not autistic) or if they could be motor tics which I am not to familiar with. Previously he did visual stims like shaking items in front of eyes or little hops. He has started sticking out and biting the middle of his tounge , to the point where he has furrows in his tounge. He will get into periods where he does it every 30 seconds for an hour plus and other days very little. Also chewing the inside of his cheeks to the point of bleeding and chewing on his shirts to the point of destorying the cuffs biting holes through them. He has always had low oral tone and been somewhat oral but chewing behaviors and the associated oral motor z-vibe work had stopped many years ago. The tounge/cheek biting one almost seems to stress him out, it dosent seem to bring him joy but to cause him to get upset/stressed/anxious like he cant stop. He will not stop doing it with reminders, correction, or positive replacement, He will get so involved in doing this espically in the evening that he kind of breaks down & "loses it" we have to put him to bed for the night. Its like he has lost control of his system or his brain or something???????? He has also started jerking his head straight back to a 90 degree angle, so as to look up at the ceiling, its a pretty violent jerk and he will do like 2 or 3 in a row. I am trying to figure out if this could be what is called a motor tic as opposed to a stim. He will do it when he is happy, when he is sad, in the middle of a sentence, at home, in public at therapy all over. I have noticed no particular trigger or that it is during a particular emotion. It really stands out to all around him and I dont know what to do about it. It is a very "socialy akward" display and I feel like everyone is staring at him {well way more then they did anyway} I have never seen him do any thing like this that he even does mid sentence before. Any ideas??? I feel we have also seen more emotional.......falling apart, crying, whiney and defiant.......wont eat, not listening ect. behavior. Also he will wake up in the middle of the night in a mini rage of sorts will have torn all blankets off bed and will come to our room but then when we ask what he needs he storms back to his room jumps in bed and goes right to sleep....I hate to say it but like he is momentarily possesed..... I would appreciate any thought on any of this. Its like he turned 10 and his world went crazy, I just want him to be able to be happy again and not seem trapped by his body/mind. Is this Tics, Anxiety, OCD...... Can knew conditions/diagnnosis pop up at this age???Who would I take him to see for any of this? Thanks for reading

sbgrace thank you for your insight and it is all very concerning isnt it, espically when you just want an answer. I will have to think about the blood sugar things because now that you say it he is the same way with refusing to eat. He barely eats enough to keep a bird alive somedays....of course he would eat endless junk food if we allowed it. I think it could be anxiety because he dose have some other "anxious" behaviors though they are more physical then emotional. He goes through phases of repeadly rubbing his cheeck on his shoulder till it is all red and chapped..like 100's of times a day. He has also been chewing on the inside of his mouth and creating ulcers, and he also chews his fingernails down so low it is pretty bad, sometimes till they bleed. I beleive these are all possible signs of anxiety unless they are just sensory?? I dont think he is depressed, I would say he has nothing to be depressed about but it is hard to say what is going on in his head with his limited ability to communicate his feelings. geodob I did not think about the struggle for autonomy, I guess I shouldnt assume that because I have totally embraced taking care of him for the rest of his like that he has. Certainley food for thought. I think I would lean away from ODD but is certainley worth posing as an option. I will read more in its regaurd. Thank You Mom of a bunch, I am glad to hear I am not the only one...Well not glad you are facing it but glad to have others that have gone before me. My husband and I were discussing today that maybe it would be something that would require meds and how we both said we never wanted to do meds for anything (PArenting rule #1 Never say neer until you have been there LOL!) IF this behavior was to keep up it would have to certainley be a consideration because we are all so on edge when it happens and it iss robbing alot of joy from his life. I am glad to hear you got things straight with your daughter one of my biggest concerns wuld be finding that right specialist to work with. Lots of food for thought! Thank You for your insight

So my very happy Son has become not so happy. This has been developing for a year and I cant deny it anymore, that I am wondering if there is something really going on here. You can see his diagnosis in my Siggy but his primary is Intellectual Disability IQ of 40, Apraxia and SPD. He just turned 10. I am just trying to figure out what is going on with him as he has developed lots of strange angry new behavior in the last year 1) When he wakes up in the morning, he will show up in our room happily say hello and then storm off angry and stay that way for 30 mins. Whine and slat his body around. Disappear to his room and come out naked, ask to take a shower and then storm off saying he dosent want to take one. All of this is totally unprovoked, he just got out of bed nothing could have offeneded him yet 2) He will ask for a drink or a snack and then when you go to hand it to him he will in a whining voice repedaly say "I dont want it, I dont want it, I dont want it" 3)Randomly storming off to this room and throwing himself in his bed repeating in a whining voice "I tired, I tired, I tired: 4) If he gets offened, or told no, or put in time out he will sit there in another room and repeadtly say things like "I kill you, I burn you, I dont like you, I hurt my brother" . He dose have echolia, and I dont feel like he would actually do these things...he cannot even really grasp what they mean or the finality of the actions. On the flip side it seems very messed up to just allow this and ignore it???? When he says it, it is like he is saying his internal dialog outloud. He seems like he is losing it in these moments. I am just trying to figure out if this is part of ID, if there is a seperate mental health thing going on, if it is hromones??????? Anyone have similar experiences or ideas?????

So happy you have made such great progress, what a huge victory! My DS is 10 and I wanted to share a few thoughts many you may already know about or have tried . To answer your question at age 12 I would say functional life skills and reading skills would be most important, though I would still try to work on everything you can. READING: My son had the same problem as your daughter, he learned all letters sounds and then hit a wall with blending he was finally able to blend/learn a few word family words from watching leap frog videos but beyond that blending was a bust. We have started working on a sight word curriculum because of this. Some will say switching to sight words is like giving up but for us he has learned so many words this way in the last six months we cannot argue that this is how his brain works best. We purchased the EDMARK curriculum the regular program is very expensive by there is a software edition for homeschoolers that we got for $200 . Still not cheap but well worth it for the progress we have seen. We are also still doing a phonics program cocurrently on the computer called reading bear and Click N Kids. I would caution using two methods though as it may confuse some kids. You might also consider the book teaching reading to children with down syndrome , another program that teaches via sight words. If you would still like to pursue phonics the other programs you will see here that moms have had success with include I See Sam reading & Stevenson reading, Sound foundations MATH: I strongly recommend Teaching. Math to children with down syndrome. The activities in this book have helped many kids I know learn the math survival skills necessary WRITING We as so many have worked with the ideas Behind Handwriting without tears. Since starting this program last year my son can now at least trace his name in all caps. He has a horrible grip and the letters are not pretty but if he is only to gain one writing skill his name would be my goal. I would also consider teaching typing or learning the letters on the keyboard as an alternative as so much of the world is around typing now. Obviously like my son she can't spell but I am teaching him where the letters are so if we ever get there in the future the keyboard is a familiar setup. When he wants to look at a website I spell out the letters for him and he finds/types them. Every morning I have him type his name 3 times after 2 months he can now can spell the first 3 letters of his name himself. FUNCTIONAL SKILLS the book Steps to Independence was very helpful to me and follows some of the logic of ABA as well FINE MOTOR: this skill seems to be so hard to work on as it is so tiring for them. I just try to keep working on skills everyday and hope for as much progress as possible. Some great resources are the blog OTMAMA and the books teaching fine motor skills to children with down syndrome

Thank you all for the input the life skills route seems the most likely right now, I just dont want to let him down KWIM. Geodob great suggestions, thank you. I have to remember to work into his intrest as you suggested. one step- the interenship is a great idea!! I have a good idea of his learning style though I have not pursued the brain research much and probably should.

My DS just turned 9 he has had ST & OT since he was 2 he also had developmental therapy for 2 years till he aged out and PT for 4 years. Obviously we homeschool he has never gone to a school/preschool/program of any kind. I am hitting a wall on how to teach him, this will sound crazy but it seems like he cant learn, I mean I know he has obviously or he would not know anything. For example I could say the following sentence to him " The sun provides warmth and light" then immediatly ask him what does the sun provide and he cannot answer the question. It seems impossible to teach much to someone who cannot retain one sentence for one second. He hates when we do school, understandably and honestly so do I at this point. It is like torture. I feel like saying forget school work and just letting him live his life and have fun on the other hand I dont want to be underestimating his potential. Is a child with an IQ of 40 ever going to get/use/need half of what I am trying to force him to understand????????? His diagnosis is moderate MR, fine motor delays, apraxia, minor sensory. He was IQ tested again 1 year ago and scores are as follows Similarities 1, Vocab 2, Comprehensio 1, block deign 1, picture concepts 1, matrix reasoning 1, Digit Span 1, Letter-number sequence 1, coding 1, symbol search 1. Full Scale IQ 40. Currirulum we have tried: bearly reading, bear neccesities, developmental math, math for people with DS, Hooked on phonics, exploded the code, Math U See, Little hands to heaven, Rod & Staff Academic skills he has right now: He can rote count to 50 Recognize numbers1-11 Give the phonetic sound for all letters of alphabet We started reading and he only got as far as soundng out 3 letter words and very inconsistentley He has not been able to memorize any sight words Just started to realize the clock gives time He enjoys: acting crazy (running, jumping, rolling on the floor) jumping on the trampoline listening to music & dancing riding his toy 4 wheeler bowling swinging he will stand outside and litteraly talk to the sky for hours walking around stores I would love any insight into opinions on what is best for him??????? What should I expect??? What has been your experience???

For those of you with kids with considerable disabilities that will most likely not ever be fully independent, what do you think the most important academic skills are for them to learn?? I know self help skills of course, and in our house knowing the Lord & compassion/love, but academically...... Do they need to count to 1000, 100 or 12? Would you try to teach Addition and subtraction ect or just focus on money, time, counting? Do they need to be able to read everything, or would you focus on certain reading skills? What about Social Studies, History, Science ? How much value do you see in spending time on these subjects? I find myself questioning where I should be focused espically living in a state where we are required to teach sci,social studies,fineart,library skills, health ect?? for those with older children What has served your children the most of all the things you have taught them??

My DS age 8 had a moderate Intellectual disability (45 IQ). He is not reading but knows all phonetic letter sounds, first learning them connected to Capitals, and now has learned them connected to lower case. He is souding out the basic CVC words (sit/sat/dog ect.). Teaching him lowercase has brought something to my attention though. When identifying letters in lower case he mixes up b,d and p for each other. also n and h. and g and e. He is also just this year learning to recognize written numbers and is confusing 6 for 9 and 5 for 2. He recognizes correctly all other numbers from 0 to 12. He is not writing yet so nothing to go on there. His vision was checked at a specilaist because he could not do the in the Ped office check. and his vision was fine. What do you think possibel dyselxia or just part of his ID????

I just want to send some big ((HUGS)). My son is only 8 but I can already see completely what you are saying. Kids are just not interested in playing/talking with a child who doesn’t play/talk back, like my son and seemingly yours. I have told my husband I cannot blame the other kids though, because it would be hard to form a friendship with someone that is nervous and doesn’t respond when you come near them, and doesn’t participate in any of the things you do ie. What do you talk about? So I try not to look at the other kids as at fault or be angry with them. I also know what you mean about your DS friends being his "friends" only because the adults are friends. That is all of my DS "friends", but I will take that knowing that at least he is getting/observing some social situations and in his mind at least for now they are his friends. I don’t know if they think that way but he does. As for activities, sports or otherwise, I think the older they get the harder it is. Like you say the skill level they are at would put them in a much younger group, but how embarrassing is that for them. We decided my son is going to have to pursue individual sports, and not team sports. So things like swimming, bowling, golf, archery ect. Also the special Olympics of course have great programs. I ended up starting my own area Co-op with a friend and now we are just a small group with four families but it is perfect size for DS. I did a class the third week on disabilities and to explain to the other kids some of the ways DS might act/why/ and how to respond to him. For example he might not answer you when you ask him a question, but it’s not him ignoring you he just doesn’t know how to respond so you can either just keep talking to him or come find me and I will help you to understand him OR he might follow you to closely sometimes, he doesn’t know that makes people uncomfortable, so you can kindly ask him to give you a little space or if you want you can come find me. I taught them things like that and how to look beyond the disability and allowed them to ask any question they wanted. That seemed to make a diffrence, they kind of help him now like they would a little sibling patient, extra instruction, extra time in games, will hand over hand try to help him It really is wonderful! Have you tried looking for similarly disabled families within your area on your local homeschooling message boards ect?? Perhaps some social practice is in order if you can find someone with a slightly older son/daughter who you can use as a practice partner for social skills? I must admit that we are those "heavy into our faith" homeschoolers you refer to and we pretty much do hang around with likeminded people. I have found that there truly are so many differences in our lifestyle/view of things/activities/what we let our kids say,do,play with,talk about ect and just the view with which we come at life is so different it is very hard to form deep friendships with secular families just because there is so little in common KWIM. So your read on the people in your area is probably correct. I hope and am sure there must be some other secular homeschoolers in your area. Maybe you could also address that you are looking for that specifically on your state homeschooling board. I must say also that his friends being Adults might not be all that bad I mean you’re only a kid for 16ish years and an Adult a whole lot longer. Maybe he is just getting a jumpstart on real life. :auto: That is great he has done so well in karate, that is a big accomplishment :hurray: I hope you are able to find some people around you soon. Know you are not alone :grouphug:

Thank you all so much for your support!! You have all made so many great suggestions and just reading this makes me feel better like we dont have to conquer the world. I have always been very cautious to contact any Dept of education people because I just want to be "left alone" if you know what I mean. But I think it might be time to at least get some guidelines if only to put my mind at ease. Otakee- it is nice to hear from someone else who has homeschooled someone in the same low cognitive range, I have not found many people. It is so encouraging to hear about your daughters reading success, that is AMAZING. If my ds ever reads at a 4th grade level I will be over the moon excited for him. I will certainley check into the I see sam thanks for the suggestions!! Tam- thanks for the great ideas. I think simply moving to more hands on will help I think I just needed to hear from someone else that it made sense and was OK. Merry Gardens- how you explained how everyday activities could fit into the diffrent academic categories made so much sense and gave me hope because we do so many of those things but I never thought of them as "school". I think I need to get myself out of the public school/classroom mindset. Thanks again to all!!

I dont know what to do or what to change. My DS is 8, he is intellectually disabeled with a latest Full scale IQ of 43, he has verbal apraxia and delays labled signifigant in expressive and receptive language and fine motor skills.He also has some sensory issues which are more minor. He generally functions cognitivley/self help skills like a 3 year old. Having said that school is a depressing prospect for us both right now, neither of us enjoy it which is not what I pictured or wanted!! He has no intrest in learning much of anything sit down, he will focus for maybe 15mins and then zones out/looks around/is not focused. He can not answer comprehension questions only simple questions about concrete things like "What is that? or Where is the pig? I feel like I am torturing him, as he hates when I say time for schoolwork and is clearly not getting most of it. We live in Maine and are required to teach seven subjects and have a certified teacher portfolio review at the end of the year. The subjects are Language Arts, Math, Social Studies, Science, Health, PE, Fine Arts. I feel like trying to teach him health, social studies, science, fine arts is a waste of time when he cant grasp the basics and I am trying to teach him lessons in these "waste" subjects which stresses me out. In public school would a child of his IQ be learning about cultures around the world?? For curriculum We currently are using Reading: Hooked on phonics and bearly reading (We are working on CVC words he now recognizes all upper case letter and knows all the phonetic sounds and recognizes about 18 of the lowercase but he cant consistently sound anything out beyond words that end in /at/. He cant seem to retain any sight words. and most recently in learning lowercase letters he is confusing b,d,p and h,n,r is that normal?) Math: worksheets from PreK & K workbooks (working on recognizing written numbers, it has taken 6 months to recognize 4 written numbers. He can rote count to 50 but still is incosistent on one to one correspondence even on small numbers up to 10) Writing: HWOT (he cannot write anything on his own yet, he can only trace very simple shapes) Social Studies: Christian Light Education K Science:Abeka enjoying Gods world K Health Abeka K I guess I just need suggestions is it me or is the state expecting to much? Should he be learning faster or is this the expected rate for a child with his IQ? Do I keep forcing him to do lessons or am I doing more harm then good? I dont want him to hate learning or me? Any program ro curriculum suggestions. It seems all the curriculum moves way to fast Sorry to whine but it has been a rough couple of months!!!