What did getting an ASD diagnosis change for you and your child? (and does this sound like an ASD?)

[APToddlerMama]

I'm sorry to be hijacking the entire SN board lately with a bunch of questions but you all are so helpful, so here I go again....

Two part question... First does this sound like autism spectrum to you?

DS is 4.5 and has global delays, both motor and speech. His sleep sucks and always has. He has numerous intolerances and his ASD like behavior has dramatically improved since implementing dietary changes. He has had about four obsessions in his short life, each lasting about a year or longer which literally could occupy 100% of his day if we allowed them to. He locks onto an idea quickly and then becomes highly upset when it changes. For instance, if he drinks water out of a blue cup three days in a row for breakfast and the fourth days the cup is green, he may start sobbing. I might get the blue cup back out and give it to him and he might cry for 20 more minutes about "why did you give me the green cup???" even though the problem has been fixed. Or I might give pull a piece of paper out of a notebook for him to use and then the next time when I give him the entire notebook he might flip out that it has to be ripped out of the notebook. He has a very rigid set of standards for how he wants almost everything and a very hard time dealing with it if it isn't "right.". He cannot seem to figure out exchanges where it's my turn, then your turn. Games with turns seem to go over his head entirely. He has a high level of anxiety and hesitation around surprising things. Today his SLP pulled out a tennis ball with a hole cut in as a mouth. She was not doing much with it but even five minutes into feeding it pennies as part of a game, he was still flinching and standing back from it. He tends to like to converse with adults but not so much with peers, especially other little boys. He shuts down in highly stimulating environments and doesn't seem to hear others. He remembers totally obscure things and brings them up to us months later.

On the other hand, he is extremely extroverted and loves to strike up conversations with adults. He can ask very appropriate questions and have real "conversations.". He can have great eye contact, is affectionate, etc. He has a good sense of humor and likes to tease people by saying things he knows are not true. I think this is what is throwing people off. I'm getting pissed really by some of the professionals working with him telling me it's okay for him to engage in one obsession for ten hours a day, that it's normal for a kid to cry and tantrum for 1.5 hours because he wanted a piece of paper a certain way even after getting a new piece of paper almost immediately, etc. in my heart, I feel he is on the spectrum.

Which brings me to the second question.... What did getting a diagnosis change for your child and for you? Both good and bad... I've been on the fence about having someone new take a look at him because I wanted to give him time to grow and develop before pinning a diagnosis on him since he's been getting services anyhow, but I think the time has come to go ahead and know for sure.

Your thoughts are appreciated .

[livinglife]

Hi APToddlermama, yes, to me, he sounds like he's somewhere on the spectrum.  I'm sorry.  I suspect that his symptoms will fade with nutritional and dietary interventions as well as the right behavioral plans in place.  There is every hope of that.  I have been where you are with my now 10 year old and there is every hope for improvement and recovery. 

He sounds like my son who has atypical autism which is the soon to be eliminated PDD-NOS diagnosis.  What a diagnosis will do for you is to have supports and an IEP in place to make a smooth transition to Kindergarten.  It will give teachers greater understanding about where your son's behaviors come from, ie, rather then him being stubborn or misbehaving or inflexible or ignoring directions, he is symptomatic and behavioral plans, routine and constancy (as well as your wonderful dietary and nutritional supports) will improve his behavior enormously.  It raises consciousness so you don't have to convince teachers that your child isn't willfully misbehaving and reduces his (and your) anxiety because he has a better chance of doing well when adults know how to work with him. 

I am concerned that your son is over his head at his preschool if the teachers and school director are not willing to work flexibly with you to meet his needs.  Are they willing to speak with or consult with your child's speech therapist?  When you say you hope it will get better, are you hoping that your son adapts or has the school put supports in place to help his adjustment?

Some supports my son's preschool used for him were, to match him to another boy and set up play scenarios, with just the other child (like giving him a buddy).  Lines for lunch, or washing hands or bathroom were staggered, the teachers taking 5 children at a time.  (it is very hard to stand in line with many children when you have sensory issues) and since the children's cubbies which held their belongings were also crammed together (another sensory issue) they would also stagger going out to cubbies.  They also placed their hand on his shoulder when they spoke to him to ensure he directed his attention to them when they were speaking.  It takes some organization and a willingness to look at their routines but the school could reduce his anxiety enormously.  I guess we were very lucky to have good people around us.  If you don't have the right people, don't be afraid to "fire" them.  Your son deserves the chance to succeed and will, in the right environment!

Edited by livinglife - 9/21/12 at 3:19pm

[APToddlerMama]

Thank you livinglife! Welcome to MDC three months late by the way. I'm happy you're here . To answer your question about school, our SLP is very nice but part of the problem. She thinks everything he does is typical even though it is not and she also has a "sink or swim" attitude about school which is against my personal parenting beliefs and I know it would be unsuccessful with him anyhow. On the other hand, his OT has suggested numerous strategies and supports for school, though I think the teachers have their hands full and I doubt their capacity to implement any changes for him. I'm 80% certain this isn't going to work out and have spent hours this week on the phone looking for other options. He has an IEP in place but I didn't want him in EC in our school district (not at all impressed) so I put him in a private preschool where actually a friend of mine sent her daughter who is on the spectrum yeas ago. She did well there but had different teachers. So to answer your questions, yes, I hope he adapts though I know that isn't going to magically happen so I am trying to work with school to make that happen. I am getting the distinct feeling though that they're not really listening to me or the OT and just have too many other things to juggle in the classroom.

Several other things came to mind that I wanted to add to my "does this sound spectrum-ish to you" list.... Recalling totally random facts. Tonight: "mom, remember at Emma's house they had those sheets with suns?"...okay yeah I do recall that now that you mention it but that was 10 months ago and we haven't ever discussed this except for maybe that day. Also bringing up things like "why dont fish have noses?" and then becoming very very upset, crying, asking repeatedly for several minutes at a time and then multiple days or even weeks in a row. Being very picky and selective about things being in their place...ie putting a toy boat on the corner or the coffee table day after day after day and if anyone moves it, puts it back there. I find random objects, picture frames, things he doesn't actually play with moved to the same location time and time again. They "have" to be there. Just very recently started telling us when he's hungry or thirsty and does this infrequently. Same thing with getting hurt. An incredible ability to do spot on impersonations of other people.

As a side note, our OT mentioned OCD and anxiety. I have a strong mental health background and no doubt see why she is thinking this, but aren't a lot of the behaviors that appear obsessive compulsive part of ASDs? Or co-morbid at least? If having OCD explains some of this, that still does not rule out ASD, correct?

[livinglife]

Hi APToddlerMama, Thank you for the welcome.  I've been around here under different names a couple of times, about 8 and 9 years ago when my son was a baby and toddler.  I would always forget the name I used so had to re-register!  I have always loved coming here for good information and I recently picked up some information on another thread, a dietary supplement that I had never used, or realized it's potential to help, and it was just what I needed to know.  Both my children are on it now and it has been incredibly helpful for them!!

Sigh...about teasing out a diagnosis, I would stop talking to your OT/SLP about what they think his diagnosis is.  They are seeing symptoms but even they know that they are not qualified to diagnosis your child.  Neither am I. 

So many people tried to tell me what they thought was going on for my son.  It used to bug me.....so MUCH!!  Mostly, because I knew that they were wrong.  My hunch was it was always more, more then ADHD....I just KNEW he spent most of his life confused about what was expected of him.  His school psychologist who gave him his first two neurospychs refused to diagnosis him because he was "two young and his picture too complicated".  One outside evaluator said it could be ADHD or NLD or both and also refused to diagnosis anything specific.  I didn't even submit this evaluation because I knew it was so off base. (my son has had inattention but due to confusion about what he's supposed to do and why!)  I didn't get a diagnosis until my son was eight, three weeks shy of his 9th birthday.  And, only because I took him to the foremost neuropsychologist in the state.  She made it clear that the PDD-NOS diagnosis over rides any other.  Now, some professionals disagree with this take and say that multiple diagnosis can exist simultaneously.  Now, people can argue this point....but I happen to agree with her take.  When someone has a spectrum diagnosis their anxiety stems from confusion, lack of constancy and routine, and should be addressed with behavioral supports not medication.  If medication is used it shouldn't be used first.  (and I wouldn't choose to use it at all if I could help my child without it....my belief system, yes, not everyone's, but is why I search so hard for other options)

I am not making my child out to be special or any more complicated then anyone else's child.  I'm afraid that many children look a bit spectrumy for a long time but are too funny, or too social, or too smart so they adapt enough, and red flags don't go up sooner and then if the flags go up it already looks like so many other things you need someone highly skilled to tease out what they see and even good professionals miss it.

That is why, it is worrisome that the DSM will change soon to eliminate PDD-NOS because it fits so many children who have social and pragmatic difficulties but are smart enough to compensate for their issues, until, it is too hard to do so any more.  Just because they are at the higher end of the spectrum doesn't mean their issues do not impact them severely.  We, as parents though, will have to fight harder to get their needs met, because autism mandated insurance reimbursement will no longer apply.  Sucks....but I'm hijacking this with my current frustration.

About your son's anxiety and OCD like behavior, again, sounds like my son.  His anxiety was due to confusion.  Things were not routine enough for him, not consistent enough for him and the amount of his anxiety diminished (and is now gone) when his school and we as his parents worked to provide him consistent expectations.  (we called it good words and good deeds....we laid out everything that was expected of him and we rewarded everything he did that we expected him to do with a monetary amount.  When he was six it was pennies, older dimes....anything he did not do we didn't punish him we just did not reward him. )  His school used an IF/THEN approach....if you do three pages of work, then you can take a 10 minute computer break.  OCD like behavior is probably a way your son is using to cope with his anxiety and need for routine.  My child didn't show this much....but, he did have large melt downs, to the degree that he would scream at me at least once a day, at the end of the day at home, and later, at older ages, he would hide under the table at school.

Yes, anxiety and OCD can be co-morbid with spectrum disorders.  It is highly likely that you can treat these symptoms just purely with behavioral interventions and with changing his environment to make it more predictable.  If you cannot reduce his anxiety this way you'll cross that bridge when you get there.

And, I'll add my plug for dietary changes, homeopathic medicine (specifically isopathy and the CEASE method of autism treatment) and nutritional supports.  We are almost two years into using these as supports and my son no longer uses incentive plans....he has an allowance for doing his homework.  He is no longer anxious, is in the classroom all day, no longer needs incentives like the if/then approach to do his school work during school and has better memory, organizational skills, emotional control, social skills, etc etc.  I am AMAZED.

I hope that this helps.  I would suggest you research the best evaluator in your state and use them.  Firm up the diagnosis.  Encourage them to use the atypical autism diagnosis if they are unsure if autism applies, even if they prefer a wait and see approach, because the benefit to your child is support and services.  He can always "out grow" the diagnosis and have it no longer apply when or if it no longer does.  Having a diagnosis will firm up in the school's mind what has to be done for him and make sure that proper supports are in place.  It also in some locations allows a home based therapist to work with you to set up behavioral plans so you don't have to do it all yourself.  If I could go back in time, I would have forced the issue, and gotten a firm diagnosis sooner.  Not only did it pave the way at school for my son, but it firmed up in my mind, my resolve to make any and all necessary changes in our diet and health choices to assist him. 

Sorry this is SOOOO long!!

[Linda on the move]

It gave us clarity. It gave us a better way to talk about what was going on.

A full neuro psychological evaluation comes up with FAR more information that "yes, your kiddo is on the spectrum" or "no, your kid is just a little quirky, nothing with a label."  Its all that other information that was really helpful in figuring out better ways to meet my DD's complex needs.

This stuff isn't cut and dry, and while I see lots of flags in your post, plenty to warrant an eval, I'm not qualified to diagnosis. My experience is that between things that can be co-morbid or things that can mimic symptoms, a real diagnosis is complex and requires specific testing and input about what the child is like in a wide variety of situations. My DD has a friend at school who seems very like her and I assumed that she had a similar diagnosis. But she doesn't. Her mom and I talk about it one time and confided our children's actual diagnoses, and they have different things going on with them and sometimes do better with different approaches, even though to an observer familiar with this kind of stuff, they look similar.

Some of the "professionals" telling you he's OK aren't qualified to diagnosis.  They at out of their depth and shouldn't be saying anything one way or the other. They don't have any better idea whether or not your kid is on the spectrum than I did about my DD's friend.
 

May be your child isn't on that autism spectrum. May be he has non verbal learning disability. May be he has some sensory issues combined with OCD. May be he has a food sensitivity. May be he is on the spectrum. Wouldn't it be easy to help him find his happiness if you had a better idea what is going on for him?

I, personally, don't think the reason to get an eval is to rubber stamp what you think your child has because of what you've read on the internet. I think the a better reason is to get the insight and expertise of a professional, to learn more about your child.

You asked how it has effected my child, and by that I'm assuming you mean how my child views her self. My DD is much happier with herself knowing her diagnosis. She always knew she was different from other people, but now she knows that she is completely normal for someone with Asperger's.  That was a wonderful relief to her. My being OK with her being diagnosed paved the way for her to be OK with who she is.

If you kid is on the spectrum, not getting an official diagnosis isn't going to change that. Part of what the diagnosis does is open up help and emotional support to your child. It lets them know that there are other people like them, some of whom have gone on to do quite remarkable things. It makes them less isolated. It lets them know that it really OK that they are they way they are.

For a person who is on the spectrum but never gets a diagnosis, they will receive messages through out their lives that they are just wrong. They way the think is wrong, what they enjoy is wrong, everything about them is just off. That's not a way for a person to have a happy life.

One caveat -- getting an eval is a bit like getting a picture taken. My DD is now 15 and has had couple. We will do one more before college to help understand what sort of accommodations would be most helpful to her. I don't mean to imply by what I've said that getting an eval will tell you everything. There is only so much that can be figured out about a kid at one age. None the less, I suspect you would learn a lot about your child by getting a full evaluation.

Good luck
 

[mamarhu]

Just another perspective here, not really meant as advice or suggestion...

YoungSon is now 16, quirky as can be, but would probably no longer qualify for any diagnosis at all. Ten years, ago, he was evaluated (and a few times in between) and variously dx'ed with PDD-NOS, anxiety, SPD, dyslexia, apraxia, selective mutism, attachment issues, PTSD, and mild retardation (IQ 72). None of these things apply now, but I cannot truly say he is "cured", has outgrown it, was never correctly diagnosed, or what.

His symptoms were much like both the kids described above. Major meltdowns, crippling anxiety, really didn't function or learn at school. We tried various IEP accommodations, but I ended up mostly homeschooling, until last year, when he started at the public high school. He now attends with no accommodations and is thriving. He had all sorts of eating and sensory issues. Dietary (DFCF) changes had no impact whatsoever (after a minor choking incident at 8, he put himself on a clear liquid diet, nothing but water, apple juice and homemade, strained chicken broth, for about 9 months). We briefly tried medications, with no positive results, even for the anxiety, which sounds like it would be the most "treatable" of his symptoms.

No therapeutic or formal behavioral interventions really had any impact. We tried all sorts of things, but they either caused so much anxiety that we had to quit, had no visible benefit after several months, or conflicted too directly with my parenting values and instincts.
 

To answer the original question, the diagnoses gave me some understanding and perhaps patience with YoungSon. But on a more concrete level, it was pretty meaningless.

[APToddlerMama]

Originally Posted by livinglife 

About your son's anxiety and OCD like behavior, again, sounds like my son.  His anxiety was due to confusion.  Things were not routine enough for him, not consistent enough for him and the amount of his anxiety diminished (and is now gone) when his school and we as his parents worked to provide him consistent expectations.  (we called it good words and good deeds....we laid out everything that was expected of him and we rewarded everything he did that we expected him to do with a monetary amount.  When he was six it was pennies, older dimes....anything he did not do we didn't punish him we just did not reward him. )  His school used an IF/THEN approach....if you do three pages of work, then you can take a 10 minute computer break.  OCD like behavior is probably a way your son is using to cope with his anxiety and need for routine.  My child didn't show this much....but, he did have large melt downs, to the degree that he would scream at me at least once a day, at the end of the day at home, and later, at older ages, he would hide under the table at school.

Yes, anxiety and OCD can be co-morbid with spectrum disorders.  It is highly likely that you can treat these symptoms just purely with behavioral interventions and with changing his environment to make it more predictable.  If you cannot reduce his anxiety this way you'll cross that bridge when you get there.

And, I'll add my plug for dietary changes, homeopathic medicine (specifically isopathy and the CEASE method of autism treatment) and nutritional supports.  We are almost two years into using these as supports and my son no longer uses incentive plans....he has an allowance for doing his homework.  He is no longer anxious, is in the classroom all day, no longer needs incentives like the if/then approach to do his school work during school and has better memory, organizational skills, emotional control, social skills, etc etc.  I am AMAZED.

Thank you so much livinglife.  I really truly appreciate all of your help.  Can you tell me more about how you set things up to make them more consistent and routine for your son?  I feel like we already are doing this and it isn't helping but maybe I'm missing something.  There is just a huge piece of this that seems mood related.  He's melting down and tantruming again at absolutely everything...things that don't make sense and are completely irrational like "I don't want lemons to be yellow!" and "I don't want the boy in that book to be wearing long sleeves!" and then crying and crying and crying. 

So how did you find someone who did isopathy and CEASE?  I'm intrigued and definitely want to exhaust all possible options for him before looking at pharma but he's so miserable again.

Originally Posted by Linda on the move 

It gave us clarity. It gave us a better way to talk about what was going on.

You asked how it has effected my child, and by that I'm assuming you mean how my child views her self. My DD is much happier with herself knowing her diagnosis. She always knew she was different from other people, but now she knows that she is completely normal for someone with Asperger's.  That was a wonderful relief to her. My being OK with her being diagnosed paved the way for her to be OK with who she is.

If you kid is on the spectrum, not getting an official diagnosis isn't going to change that. Part of what the diagnosis does is open up help and emotional support to your child. It lets them know that there are other people like them, some of whom have gone on to do quite remarkable things. It makes them less isolated. It lets them know that it really OK that they are they way they are.

For a person who is on the spectrum but never gets a diagnosis, they will receive messages through out their lives that they are just wrong. They way the think is wrong, what they enjoy is wrong, everything about them is just off. That's not a way for a person to have a happy life.
 

Very helpful Linda.  I really appreciate it.  All of that makes sense and I actually scheduled a neuropsych eval for him.  With the question of how it changed things for your child, I guess it was open ended, but that helps.  I was also wondering how it changed how others viewed her....as in did teachers expect more or less?  Were they more sensitive?  Did it help them figure out how to better work with her? 

Originally Posted by mamarhu 

Just another perspective here, not really meant as advice or suggestion...

YoungSon is now 16, quirky as can be, but would probably no longer qualify for any diagnosis at all. Ten years, ago, he was evaluated (and a few times in between) and variously dx'ed with PDD-NOS, anxiety, SPD, dyslexia, apraxia, selective mutism, attachment issues, PTSD, and mild retardation (IQ 72). None of these things apply now, but I cannot truly say he is "cured", has outgrown it, was never correctly diagnosed, or what.

His symptoms were much like both the kids described above. Major meltdowns, crippling anxiety, really didn't function or learn at school. We tried various IEP accommodations, but I ended up mostly homeschooling, until last year, when he started at the public high school. He now attends with no accommodations and is thriving. He had all sorts of eating and sensory issues. Dietary (DFCF) changes had no impact whatsoever (after a minor choking incident at 8, he put himself on a clear liquid diet, nothing but water, apple juice and homemade, strained chicken broth, for about 9 months). We briefly tried medications, with no positive results, even for the anxiety, which sounds like it would be the most "treatable" of his symptoms.

No therapeutic or formal behavioral interventions really had any impact. We tried all sorts of things, but they either caused so much anxiety that we had to quit, had no visible benefit after several months, or conflicted too directly with my parenting values and instincts.
 

To answer the original question, the diagnoses gave me some understanding and perhaps patience with YoungSon. But on a more concrete level, it was pretty meaningless.

Wow.  Thank you mamarhu.  That is really interesting that he is doing so well now and gives me some hope.  Did you watch things slowly get better or did it happen suddenly?  How did you handle his meltdowns?

As a side note for everyone....who have you/do you share your child's diagnosis with?  I will be shocked if we don't leave the neuropsych evaluation with a diagnosis but I feel a bit torn over who to share with and who not to.  One of the biggest reasons I feel I need a diagnosis for him now is so that his teachers will better understand him and how to help him, so that is a given that we'd need to share with them.  I also feel like his behavior could be better explained to lots of people, friends, family, etc., though on the other hand, I sort of feel like it is private and he should be the one to choose to share with the "non-essential" people as he grows older.  I am not a private person at all and am comfortable sharing about myself and my instinct would be to share about him too, but I just don't know if this is the wrong thing to do. I also think people do not really understand autism, anxiety, etc., and there is such a huge stigma attached to all of these.   Any help with how you decided to proceed with this aspect with your children and how you came to that conclusion would be very helpful. 

[livinglife]

Hi!  I can let you know what we did to create routines and break things down for our son.  It was a huge amount of work and it is a bit heartbreaking to think back at how we had to create such basic behavioral plans because it illustrated just how confused he was much of the time and how much of his reactions that I thought were defiant or overly emotional were his way of saying make things more clear.  It was such a relief for me to start doing our "good words and good deeds charts" because it helped our relationship feel close and positive again and I could encourage him in very concrete supportive ways to learn how to handle himself.

So..... I had an incentive plan where he earned "benny's pennies", a penny for every good deed and good word outlined in his chart, and no punishments just no penny if he didn't fulfill his expectations.  I would remind him if he were straying from his expectations and told him he didn't have to be perfect...if he responded to the warning he was back on track and he earned his good deed.

Morning:

-brush teeth

-use potty

-get dressed

-eat breakfast

-leave for school

-do all this without reminders

-do all this without "muss and fuss" (which was our word for frustration, emotional outbursts etc)

after school

-greet mother and sister with smile and hello (instead of grumpiness and irritation)

-leave the classroom easily and without reminders

-leave the playground after playtime without "muss and fuss"

-eat dinner

(o.k. you get my drift)

Now, to explain why this works....kids on the spectrum often have very poor executive functioning skills that manifest in different ways....poor organization, poor memory, also poor emotional control is an aspect of executive functioning skill.  Most young children have developing executive functioning skills and use their parents as a way to test out their skill and use their parents satisfaction in them and a job well done as an adequate reward for their effort.  If you don't recognize facial expressions or hear your mom's joy in your good job because you don't read tone of voice, like many kids on the spectrum, having an external reward that they can understand is really important....since the usual incentives people use are not available to the child.  Very explicit verbal praise directed at what they just did that was right is also wonderful.  "when you said thank you to me right now you made me feel so glad".

My son LOVES money, saving it, thinking about how to spend it, what it feels like etc.  We used money.  He would save up for a desired toy.  You could use what ever motivates your child....bed time stories, dinners out, points for a trip to the zoo....marbles.  What ever works for him.  NEVER take away what they earn once it is earned.  Never make a big deal about not earning something.  I would remind him lightly about his good words and good deeds chart during the day.  It would get him back on track.  I also would review it every night before bed to help him remember it but also review all the ways he did good and earned over the day.

That's what we did, and I would change it as he mastered things and needed more attention in other places.  Sometimes I focused on speaking kindly or doing homework.  I would make it as explicit and break it down into as many steps as necessary to make it explicit and that way there is no "confusion" and there are many steps to reward and many places he can turn it around if he is loosing control.  Also at your child's age people often use picture representations of what's expected and put them in order.  You can use your camera of him doing the things that will be on the list or draw them that way you get him invested.  You hang it up so he can look at it during the day and you can point to it....what's the expectation now or next....

Hope that this helps.  This comes easily to me because I do this professionally but if you want support with this a behaviorally trained child therapist with understanding of spectrum behavior can help you.  It made a great difference in my household. 

[livinglife]

About finding a CEASE practitioner, I started out looking for a way to detoxify my child from the heavy metals in vaccinations (some mercury in flu shot and aluminum in most) without using chelation which intuitively felt too invasive for him to go through.  I had already used homeopathy for at least 10 years and was very comfortable with using it so when I plugged "homeopathic detox" into google, CEASE came up.  You can find info on Tinus Smitts' website.  Before doing CEASE for my child I had already read some of his work and knew he was very highly regarded in Europe (he died two years ago) and I had used some of his unique remedy preparations already.  His work is really interesting and profound in it's application.  My son's special needs teacher, who had no knowledge of homeopathy, could see how my son was changing before her eyes, and wanted to know what was happening.

It took about 6 months to see change hold over time, and a full year went by before I'd say I felt comfortable that we had turned a corner, but, he went from hiding under his desk at school and needing a full time aide, to being a fully participating member of his classroom who needs little to no aide support.  We gave him homeopathic preparations of all the vaccines he took in dilutions of 30c to 10m and also gave him a strep nosode in 30c to 10m because of a reoccurring tic.  At times we repeated the process of clearing a vaccine if there was more benefit and he was still improving. 

My CEASE practitioner works out of Cambridge Ma.  I bet you could find her on-line just by googling CEASE and Cambridge Ma.  She may have a good recommendation for you of someone who lives and works closer to you.  She is a lovely lady and would certainly respond to an e-mail or phone call asking for information.
 

[APToddlerMama]

Livinglife you are the best . I cannot thank you enough. Did you work with a therapist on this? What sort of philosophy or technique did he/she suggest? I've been looking at ABa, floor time, etc and places that offer these services but was starting to get sick to my stomach worrying that some of the behavior plans that might be suggested may go against my personal parenting beliefs (AP mainly.).

Your penny idea sounds like it might work and the explanation of why it works was very helpful. It is funny because I used to work with kids with special needs before having my own and have worked in child welfare etc, and provided respite care for foster children. Literally the ONE thing I did not feel qualified or drawn to dealing with was autism spectrum disorders. You have to fill out these checklists of what things you'll accept and I've done respite for kids with Downs Syndrome, bipolar disorder, kids who have sexually abused younger kids, kids with fetal alcohol syndrome, born drug positive... I can't explain why I've never felt like dealing with ASDs was within my capacity but I haven't and now here I am nearly certain this is what I'm dealing with. Ugh. Sorry for the vent. I am just feeling so depressed and overwhelmed today with how much I need to learn and do, from insurance to biomedical to just understanding things like you just outlined for me. I really appreciate it because I need to get up to speed on everything quickly.

I will look into CEASE. We only did prevnar and no other vaccines so maybe it won't be as useful for us but it's worth a try right? By the way...what supplement did you just add for your kids? Curious if it was the L-carnitine someone had suggested in another thread. I bought some but have so many supplements going I'm worried about throwing another into the mix quite yet.

Thank you thank you thank you again .

[livinglife]

Hey APToddlerMama -  I recognize your earnest desire to learn as much as possible.  I see myself in you and I sincerely believe you will find the right things that help your child.  Keep asking good questions of others and the "universe" will find a way to support you and give you the information and help you need. 

I don't know the "right" way to help your child, I only know what worked for us.  I sorted through information, read everything I could find that resonated as true, and became the "queen of google" in the process.  I then acted on my hunches and followed them where they led.  When I got really serious about his health two years ago, a switch went off and I knew I'd never look back.  I didn't care if he never ate like any of his other friends, if we were restricted in his diet....I just wanted to help him unfold in the healthiest way possible to he could express who he is.  I felt he was "hidden" in his symptoms.  And, I told his friend's parents what I was doing so that he could got over their homes, but, that they would also know the reason for his improvement.  I wasn't going to "hide" either.  If everything came together for him, I was "outed" as an alternative momma, and he was more "out" in the world. 

I learned from those experienced to be trusting of my instincts.  I always knew that foods were triggers, that his digestion and elimination were not functioning optimally, that the vaccines he got needed detoxing and that he had difficulty on top of that metabolizing certain foods and eliminating toxins from his body.  When I say I always knew I just "KNEW"....in the way that moms will often "know" when their child is about to wake up and they wake up first just in time to hear the cry.

I am certain that you have instincts about the right things to try, the right direction to take.  I don't want to tell you to use CEASE over something else.  If you do try it and it doesn't work I'd hate for you to be disillusioned.  You have to know if you feel pulled in this direction.  I had such a STRONG hunch about this being right for my child.  You have to decide where and how you feel that pull to do something. 

If you do think it's interesting when you look it up on-line speak to someone about it.  There is likely much that can be done even if he had only one vaccine.  Children who carry heavy metals from the environment or passed from mother to child can be helped.  Vaccine imprints from mother to child can be cleared.....

I didn't work with a therapist to do a behavioral plan for Ben.  His special education teacher would look at his chart and help me get more specific and explicit when I asked for help, but, we mostly did it on our own.  He has had private OT and private social skills groups when it's been necessary over the years, but, doing his behavioral charts were easy for me as I had done them for other children over the years.  It was also something we could communicate about and I became his biggest cheerleader.  I liked doing it with him.

Looking ahead, there may be many days of sadness and confusion for you.  It may take many tries to get a clear diagnosis from an evaluation and you will have to learn to live with the confusion and sadness.  It made me pull into myself for a time and then I decided to just get on with the business of life.  I try not to sit in sadness.  But, it is possible to look ahead and know that with time and good efforts on your part that he will feel secure and happy with his life.  I tried to hold a space in my minds eye for seeing a healthy happy developing child in front of me who likes school and his friends. 

Yes, you may have felt at one time that your child was the kind of child you would never feel able to help!  Well, in the big waiting room in the sky he picked you and you picked each other.  He trusts you to figure this out.  Don't be afraid to trust yourself too.  In the long run, I think that's the crux of it mama....learning to trust yourself to make good decisions for him!

Hugs to you and the best of health to him!

[livinglife]

Oh....it was L-Carnatine that I added to their supplements with co-enzyme q 10.  I don't know who made that suggestion for motor control and planning with fatigue but it's been a god send for my daughter!  I've been using aceytl-l-carnitine for my son and his memory and retention have improved.

I LOVE love love this forum for learning new things!

[APToddlerMama]

Thank you again livinglife.  I appreciate the emotional support.  It really is a rollercoaster.  I do so firmly believe there is a dietary component for at least part of this because I have seen my son completely look like he was on the spectrum (and have a psychologist tell me so but didn't want to diagnose because he wasn't even 2), and then have an "overdiagnosing" developmental pediatrician evaluate him three months after the dietary changes and say no he was not on the spectrum.  And now, here we are and things have gotten progressively worse despite staying on the diet and I'm just not sure why.  He had 2 plus years where he was making great progress and his behavior was manageable, and now nothing has changed but he's headed downhill so quickly.  His anxiety right now is absolutely through the roof as well over every little thing.

It is a lot to sort through but I know we'll get there.  I just don't know when and that is the hard part. 

[livinglife]

It's not the destination it's the trip that matters....yes?  Diet alone worked for a time, now he's telling you that you're still on the trip.  You're confused because you don't know what else to try.  No one is ever 100 percent certain before they take the 1st step that they're going in the right direction.  Just begin the journey.....I will take a risk and sound a little metaphysical or religious depending on your orientation but.... ask for help...pray on it, ask for a dream or a sign....ask your son to "help you".  You're not alone making your decisions.  I know how much responsibility it feels like and alternatively feel like you are burdened with shoulders that aren't broad enough.  But, I don't think we are alone.  If you don't think so either then use your "help".

I'd love to know how things unfold.  I hope for you that you find more that helps him.

I also want to point out that something did change recently...your son began thinking about his entry to school and then began school.  And, he regressed as a result.  You may have been holding him together and keeping his behavior and his life more in order and clear for him then you realize and the loss of you as the touchstone for his behavior and clarity has made him flounder, maybe exposed him showing just how much he needs adult support to cope.  It shows how important you are and have been but also how much structure he likely needs right now.

If you want to stay in touch through private message your welcome to.  I hope that you find a good evaluator and that his preschool is able to support his needs! 

Blessings...
 

[APToddlerMama]

Thank you livinglife. You're so right. I had a plan last time I was faced with this and I need to go back to that plan...systematically trying things until I figure out what works to make this better for him. I will send you a pm and update you as things unfold. Thanks for the offer .