It doesn’t feel complete... | ADHD Information
Our ds has been ... not improving much the last few weeks. I agree there should be some outside time and that holidays tend to aggrivate the already aggrivated. However, you guys, he just doesn't seem to be complete. We tell him to go put something up and he either 'doesn't hear us' or will start walking in the oposite direction of where he should be going. He is 6 and in first grade, by the way. Homework and how much he is actually understanding at this point is just up in the air. Either good that day or not. We get report cards this week and that will tell us a lot about whether or not we should be holding him back. He just seems together or not. Coherent or lost in space. He falls into play like our two year old. He will do things to get attention and I see it and I give it to him, I figure if he longs for it-he can have it. I love to love him. But dh is getting very frustrated in the sense that they're losing a bond (I understand so much with the woman who wrote 'losing bond with son'). It hurts and it's hard. I just feel like on the 'good' days that there is just so much potential with him. And then on his 'off' days, I feel like he is truly a special needs child. Not that special needs children don't have potential but I feel like on the good days- I feel like he's ahead of the game. Just to have the next day knock us back.
We live in a small/rural area. His dr seems very well but he's only a family dr. He keeps up with grades/side effects of meds/changes/improvements etc. but when I see you all on here writing that your child has ODD, OCD and whatever else I can't help but wonder if we are incomplete in our diagnosis. Some times it just seems worse off than just ADHD. He is VERY creative and VERY smart in the things he has ineterest in. But then other times, I look at him and our two year old son seems to have a better grasp on things than ds. I don't know. I thought I'd start here and ask where should I go next? What do I do next? Can the school test him, you know-do an assessment? I hate to admit how clueless I can be when it comes down to the diagnosis part of things.
ilovemyboys39449.580787037He sounds SO much like my daughter. If he is as inattentive as her, they really are "lost" some days. My daughter, who is now big (13) and in a fairly good place (all things considered) and we hope on an ok med regimen, looked at me once yesterday and agian this morning with tears in ehr eyes, "everything in my head is just so spinny". Breaks your heart. Now she's home from school and fine...........
That aside, you don't want him to continue to fall further and further behind. So absolutely school can test him. In writing, request an educational assessment. I'd ask for a psychological eval too, why not..........Write out your concerns, both at school and at home. The earlier LD's are discoverd the sooner he can get the right help. Just any old extra help wont help if he an LD, he'll need something specific to that LD. Or if he has no LD, then you know it's mainly his ADHD and whatever meds you are using may need to be adjusted. Is he on meds? Maybe the dose is too low?
We weren't happy last spring with daughters existing school diagnoses which was two years old. We took he r for private evaluation, paid out of pocket, requested IEP meeting and requested reimbusment from school. we got it! never hurts to ask and don't let your gaurd down. I have to constantly contact the school regarding one issue or another about once every two weeks. thinks usualy get resolved ie. some dificult confusing homework was simply re-written in smaller "chunks" and all was well. the social conflicts are harder emotionally for us, maybe in the big picture we are overreacting. I remember as a child swithcing "best freinds" quite often in elemetary school. Lastly, we're not all mothers in this forum- my daughter calls me "daddy". good luck and remember-- don't listen to anyone!OK, this is long winded, but i didn't mean for it to be. Just wanted to let you know that your son sounds EXACATLY like my 6yo dd. To a tee. Some days she is on fire and completely on top of things, other days she might ask me the same question 10x's before i snap, "i already told you! i'm not telling you again!" or she walks around in a semi haze. i wonder about her also, we are still waiting for the school to finish testing. i have high hopes. My daughter also has a Pragmatic speech delay, that puts her years behind her peers in verbal communication. she is getting a lot of group speech therapy in school, and this is helping.
What i really wanted to address was you thoughts on retention. i am not an expert, but i would really research the pros and cons of retention. it has been my understanding that, although allowing the child to have an addl year to mature, it might not help the underlying causes. i got this from an atricle by Robert Brooks, Ph.D. ( I have no idea who he is but i think he says my point better)
A major reason cited for the use of retention is that the child is immature and lagging significantly behind his or her peers academically and/or socially. A proposed remedy is for the child to repeat the same grade and be exposed for a second year to the same curriculum, thereby providing the child with an opportunity to mature and experience success (albeit with classmates who are at least a year younger). As we shall see, this rationale contains a major flaw, namely, the assumption that these children simply need an extra year to “catch up” with their peer group. Many of these youngsters require intensive interventions to address their learning and social difficulties that will not be solved by repeating the same material in the same way once or even twice or three times.
personally my daughters grades are bad right now,she has a c in reading, is failing math, spelling and writing. I would like to add that she has an A+ in PE, music, and art 
. she is also socially more imature then her peers. i would rather her pass, and get the extra support in the areas she needs to help bring her up to grade level, then have her struggle in the same areas.
WOW, that was an impressive comment
Mommyforjj,
I am sorry if that seemed ike an attack. But, please remember that many lurkers read our posts. Reading your comments can scare them away from meds. I cannot begin to tell you how may people have used those deaths as a sword against medicating for adhd. That is why I suggest that a parent become as well informed as possible. There is a lot of garbage printed as fact on the web. One needs to go to sites such as Chadd, etc. for accurate info.
You guys, this has all been very helpful. I would like to start by saying that I am so thankful for you who know exactly what I'm feeling/going through. It IS very hard. Lots of guilt and second guessing which leaves me exhausted and feeling beat up some days! But knowing I am NOT alone means that there is a good reason for it all. Second, I have researched Adderall, there are side effects which seem 'risky', but look at some of the other things in your medicine cabinets and it does seem scary! I do, also, watch what he eats. We don't stock junk food, so to speak, in our household. I can't tolerate the effects we seem to get from them. Diabetes runs very high in my family and I'm doing my best to teach my children good/healthy eating habits. But those 'special days', we do have a hay day with the 'fun' stuff!
Moving on, DS is 6 and in First grade. That is fairly young. He will not be seven until July 5th, which will put him at barely seven years old and in second grade. One of my greatest fears is that we started him too early. However, we had him screened for Kindergarten and DS scored 'above average' in his language skills and was 'average' on everything else. Prior to this diagnosis, we thought he was 'ready' for kindergarten even at such a young age. Then once kindergarten came and went and our majorly bright red flags were waving, his teacher and principal INSISTED we move him on. Now, here we are. He's struggling. So, if we hold him back-the only negative effect it would have on him could be social. Sorry, but as much as I want that to be easy for him, an education is number one in my book. He's friendly enough that he'll make new friends. It would be hard on him, but I see us recovering much more quickly in that are rather than him struggle in his academics until the day he (hopefully) graduates. Know what I mean? However, if he is only struggling because there is in fact an LD, then of course the solution would be to seek help for him and keep him where he is. I appreciate all of you taking time to give advise me. I had no idea where to even begin and I truly wondered "Does anyone truly understand the heart-ache this is causing?" so thank you.
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I don't know what your financial situation is, but if you could afford a complete neuropsych work-up on your own from an outside professional, it would be much more thorough than what you'll get from the school. Most school districts are stretched for cash and resources, so you might get the minimum from them. Also, having an eval from a professional not affiliated with the school district will help you down the road, should you find yourselves at odds with the school about the best way for them to help your child. You should consider finding a psych doctor for your son instead of his regular ped. A regular Dr. won't have the training nor experience with the various meds that a psych Dr. will. A psych may be able to recognize that your son needs a different kind of med instead of just an increase or decrease. There are different things for impulsivity vs. focus, for instance. You want to make sure that the remedy you're using isn't actually exacerbating his "fogginess." It's such a complicated road, but you're starting early and have every reason to expect that you will find a livable, comfortable solution for you all.retention is tricky and I feel should be SERIOUSLY considered. My daughter repeated Kindergarten, it was one of my better decisions in those days. It gets a bad rap, but I'm telling you, she is STILL behind in maturity. My daughter got NOTHING out of her first year of Kindergarten, every child is not ready to move on, mine was one of them. Sometimes it takes that first year just to tease out where the extra help is needed. Why move them on if they're already feeling lost? So what if they graduate high school at 19 instead of 18. BTW she is now 13 and in 7th grade, the repeating of Kindergarten is one thing I've never regretted and as I'm sure you all know, there's lots of decisions I've made that I'd love to have a "do over" for, that is not one of them.my daughter's birthday is Aug 22 so she is really not THAT much olderagewise than her classmates. She is still younger maturity wise, even repeating a year.Diane V, I too held my son back in kindergarten. The schools didn't give me much grief because he had attended private school for his first year of K but gotAuditory/Speech Therapy from the public schools. They knew he wasn't ready for 1st grade. In addition, he was so small he couldn't reach any of the water fountains and practically had to climb up on the toilets.
His birthday was on July 29 so that he would have been the youngest in his class and the smallest and he had ADHD. Socially he never had any problems, he had many friends of all ages but school was always a struggle. I never regretted holding him back but I think when he got older his friends would question him about it.kids who struggle academically will tend to eventually struggle socially, as school becomes difficult for them. BUT, vice versa applies, if they are miserable socially it will affect academics. Always keep your eye on the "big picture" ot "the whole pie". We tend to hyperfocus ourselves on what we think should be important, it's all important and you always need balance. My daughter SO needs as much academic support we can get. The past few years, however, I have shortened her summer tutor as she has been attending a 4H overnight camp. This is such a HUGE social leap for her, I felt it as important. She gets to be away from us for a week at a time, she has duties at the camp, she has to be responsible for her stuff, and she spends a whole week with girls her age. You'll know what feels right and you'll never know how it would've gone if you'd made the other choice, do what feels right at this time. He will make friends whether he is in second grade or another year in first, either way he will have friends, they'll just be younger. And with a July birthday, not much younger. I would love to say that I would never put a price tag on the help my child needed to have, but it's the unfortunate truth that we have to. We are middle class but we have three kids and just daily living...It's tough. Just adds more guilt to this whole mess!
But I do think I will start with the school evaluation and see what we can get accomplished there...It's a start. Things (communication) with his school have gotten better. DS is adorable and has a heart of gold and an explosively wonderful personality, so his school staff does like him...with the exception of those who are completely intolerant (who shouldn't be in a profession with children period). In that case, not so much. But anyway, I just want this year to be little less guilt on me, a little easier and more fun for him, and a little more patience on my part. Getting a start on a REAL evaluation can only help.
When you say 'pricey', in a range what is 'pricey'? Just curious.
BTW, he has only been on Adderall. We started out at 5mg and went up to 10mg. He was diagnosed in March of 2007.may be worth just changing to new med for starters. Or while you're waiting for these evals, that stuff takes MONTHS. Get a psychiatrist appointment for now and ask your doctor about trying something different while you wait for that consult. Keep data from both med experiences and bring to psych. sorry missed the first post, I just priced one, 00.00. I couldnt pay that either. I also dont need it, she's had many evals. Private is "best", but try not to be too paranoid about the schools. They do have to work under budget restraints and guidelines, but there's ways to get what you need. Start by requesting the evaluation, go see a child psychiatrist (in your insurance network) and take this step by step. Dont' feel guilty, you're doing a great job, do what works for you. Try not to get too caught up in others good or bad experiences, everyone shares these, but take out of each piece of advice what applies to you. I've got school to pay for all our evaluations. We did hire an advocate this year who recommended I repeat all testing privately, but after I pushed her and asked what was so bad about what we had, we instead pushed school to do more. They tried tog et out of it, but I held firm an they're going to do it. You're not anywhere near this point yet. Just formally request the evauations for now. You're doing everything right. Diane V39450.5357175926When you say it takes MONTHS, did you mean the evaluation or med? If evaluations, then what is it that they do exactly? I'm sorry if I'm overloading you with questions. I still haven't learned that nothing works quickly in this area!
I will probably start with the school and we'll just build from there. In the meantime, I can be get some steps for me and dh to follow!
you're not, its a LOT of information.
I meant the evaluations. You have to start by formally requesting them. Then once you sign the consent to test they are required to test within 45 school days. They will drag their feet on all of this, it's what they do. IMO, type a letter (ASAP) reuqesting the evaluations. Address it to the special ed department and cc the teacher, the principal and the SPED director for your town. You can call the school and just ask for these peoples names if you dont know them and you probably dont. Hand deliver the letter (if you're nice you'll have copies for the people you cc'd). Ask the secretary to date stamp your letter please and give you a copy of the dated letter. Go buy a notebook, three hole punch every scrap of communication form the school, emails, progress reports, report cards, and this letter. If you do not hear from them within a week, call (or email if you can email the SPED coordinator) and ask. Email is best, you can print it and add to your notebook.....sign the consent and keep a copy....in your notebook ....following me! Document, document....everything. even phone calls, follow up with an email thakning the for their time discussing "_______". Print and save it, or save it to an electronic file........................this may be overkill, but if not in a few years you may be very happy you started this way.....................
I was reading through all the comments and decided I would also add something
I understand what you are dealing with and its HARD. I have an 8 year old boy who was diagnosed at 3. Since then he has been on 3 different types of attention meds, aswell as Risperdal for his aggression. I had him at a very young age and never thought to further my knowledge about this whole ADD/ADHD problem. Here is what I have been doing, that is very new to me. Number one thing is I joined this forum which I have learned lots from. Another thing, I started looking into every aspect of ADHD on the internet, gathering as much info as possible. I am beginning to question many of these doctors who diagnose, and prescribe meds for these kids without much theory except for what the parent presents to them. Us, as Mothers of these types of kids need to understand the importance of many factors involved. NUMBER ONE, the amount of money these doctors are putting in their pockets for every bottle they prescribe. You dont get many of them that will say, Hey whats his diet like? They wont question the big factor because it wont gain them money. We need their doctors, and most of us will always need meds..My son for sure! BUT there are other ways of also helping them just by changes at home. Feeding Organic and cutting out all types of pre-packaged, artifical, and junk from their diets actually does help. Last night I read about Sunny D...It said to pour 1/2 cup of sugar, and tell your child to open up, because thats exactly what they are putting into their bodies when they have a bottle of Sunny D. Thats just one product example. Another is the link between the herbicides, and pesticides they are injecting into everything we eat, from fruit, to vegs, to meat and poultry. There is actually a link to that causing adhd symptoms aswell.
It did take me 5 years to finally wake up and say there has to be more. My child is suffering in life, while his doctor is making a lot of money, so I took it upon myself to research and make some changes myself. Counseling is my next step for him.
Last comment, I also read about Adderal XR, that was the first medicine to ever be prescribed to my son. In Canada, it has been banned because of sudden deaths, strokes, and seizures caused by this medicine, and it all happened to kids, from one day to another. The worst part is it happened in the US, but the only place to do anything about it was Canada. My son right now is on Vynase, which I have researched and seems to be good, and Risperdal, which is HORRIBLE and plan on ending very quickly since the treatment of this medicine isnt even ADHD. Us as parents take a big role in all this and a lot comes from what they put into their fragile bodies.
Keep the hope sweetie, you are not alone, and never will be. We are all having a horrible time dealing, and yes I am constantly impatient and screaming, and I hate it. Thats why I am also going to begin Therapy to help myself in this area too.
Good Luck, and remember to PRAY!!!
we had the school do an eval and we also hired our own psychologist through our medical plan. i recommend doing both. and feel free to change psychologists if you don't find one that clicks.
i also want to add that by going through the school, they're required to do a full-scale update every 3 years, and DS9 just had his 3-yr update. it was interesting to see the improvement!!! it really does get better.
don't forget that a big part of a parent's frustration is the steep learning curves in learning about the impairment (if there is one) and the school's and medical field's systems, let alone your child's issues.
gettingclear39450.5985416667Last comment, I also read about Adderal XR, that was the first medicine to ever be prescribed to my son. In Canada, it has been banned because of sudden deaths, strokes, and seizures caused by this medicine, and it all happened to kids, from one day to another. The worst part is it happened in the US, but the only place to do anything about it was Canada. My son right now is on Vynase, which I have researched and seems to be good, and Risperdal, which is HORRIBLE and plan on ending very quickly since the treatment of this medicine isnt even ADHD. Us as parents take a big role in all this and a lot comes from what they put into their fragile bodies.
Please go back and read some more. Adderal was halted pending an investigation[which proved that the heart related deaths were due to pre existing conditions.] The investigation has been completed. Nowhere has it been documented that any death by stroke or seisure was caused by the adhd medicine. Please remember that not everything you read on the web about adhd is fact. Do your homework and some real research.
WOW, that was an impressive comment. Number one, I never stated anything aganist this medicine or said that I am off putting in my head everything I read. This is the information I read this morning for the very first time, and since I am no longer giving my child this medicine I didnt think to further my reasearch. I was just merely stating a point I read! THATS ALL!!
What happened to this forum being for support to others, and not so much an attack?
Maybe next time you can educate a point further to someone who reads something, passed on information and so on. That attitude will probably not gain your ADHD problem with much good.
Anyway, Take Care!!
I agree with BPQW that you may need to look outside of the school system for testing. Having worked with the school system before, I just felt as though they were only doind what they had to do and get it over with. We opted for a pediatric psychiatrist route and I have never regretted it. They will be able to fully evaluate your child and get you headed in the right direction.
Good luck
I do also agree with BPQW, private is the best route. However, it is expensive and can certainly be done in conjunction wiht the school evals. Never hurts to have more than one done.
As far as meds go, I would certainly try something else. Has Adderall been his only choice? You know, my daughter got up today and was GREAT. Even she said, my head is fine today . Boy some days it is like she is unmedicated. Strange, but the days she's on, it's wonderful. I give up trying to figure it all out. We go along and if it seems there's an issue that doesnt resolve itself after a few weeks, then I think......ok....meds?, hormones? school too hard?
He is on meds. We have him on Aderall XR 10mg. Our dr opted out of raising his dose because he has no side effects, yet, and at that time- ds seemed to be doing fairly well.
He is so lost and it did break my heart, Diane, when you repeated what your daughter said. I don't want him to feel all jumbled up! I know he does, because he makes ME feel that way. I have not been very good at maintaining my own self control (yelling, impatient...). It's embarassing to admit that. He is only six and those on the 'outside' don't get it, but it is so hard!! Everyday battles that go on every day.
I guess I'll get with dh and we'll write out our concerns and an evaluation request and go from there. We'll know a lot more, too, (and probably get more support) once we get his report card on the 8th. It's so nice to get direction from you all, thank you so much~Amber
An evaluation at school that includes a psychological part can help your doctor in his own diagnosis. The doctor's can't observe him like the school can. In some ways the school can help with a correct diagnosis. If his grades are slipping he can use the extra help and the earlier he is given the help the better. I can't hardly wait for this Friday to get here, and not because of the weekend! But because it's report card time! I'm anxious because I am ready to figure out where he is academically. I'm keeping my fingers crossed, it's always nice to see that they're doing better than expected. However, I feel prepared if he's not doing well, in my first steps to figure out why exactly!