My story: PDD-NOS/ADHD/SPD/Anxiety | ADHD Information

Hi,

I'm new to the boards.  I've jumped in on a couple of threads already, but I wanted to take the time to introduce myself and my son. 

My son's story sounds like so many others' on this board.  He's been having difficulties since he was about 15 months old, when I noticed that he wouldn't play with the other kids.  He'd want to be in my lap the entire time, or else he'd melt down.  We'd have a lot of one time only play dates, as my son was so irritable while he was with other children.

As he got a little older, in addition to his irritability, I also noticed that he wasn't acquiring language as he should.  Plus he was a picky eater, hyperactive, anxious.  Although my pediatrician kept assuring me that what I was seeing was normal, my instincts told me otherwise.  Finally, at 2 1/2, I had to self-refer to early intervention services.  My son barely qualified, but I had an old-timer, who is a mother herself to an adult child who had similar difficulties growing up, who got him into the program!

Our early intervention team guided me to advocate for my son to be enrolled in our town's special ed preschool.  My son had an amazing teacher.  She was a guidepost for our family.  She taught me how to change my son's behavior with reward systems, and through using truly reinforcing rewards, I've been able to get him to sit at the table throughout a meal, how to get up in the morning without waking up the entire house, how to stay close to me at the store, how to stay safe in the parking lot, how to minimize repetitive/silly questions. 

Meanwhile, at school, his teacher was working on getting him to increase his socialization with the other children, use words to id his feelings instead of melting down, redirect him from areas of intense preoccupation (numbers), increase social language. 

My son's teacher also gave me options if I was interested in pursuing a diagnosis.  At the time, I thought that if I had the answers, he would get better.    Now I can laugh at how naive that was!! 

My son made tremendous developmental leaps in special ed preschool.  This year he entered an inclusive Kindergarten classroom.  He has accommodations in the classroom - he can chew gum, he takes sensory breaks, he has access to a paraprofessional, he uses a weighted lap blanket at circle time.  He also gets speech and language and has access to an OT if needed.  He's doing well in Kindergarten. 

Home has been another story.  He has always been a kid who couldn't regulate - he's either 100% movement or zoned out on the TV.  Since school started, he's been 100% movement all the time - crashing and banging around the house, jumping all over the furniture, not able to sit still at dinner.  His volume has always been loud, and since school started it's been SUPER loud, no matter day or night.  He's always been a kid who woke up early, but he's been waking up extremely early.  He's never been nurturing towards his 3 year old brother, but now the younger brother can't even look at him because he lashes out at him.  They've been fighting non stop.  My husband and I pride ourselves on having a high threshold for our kids' behavior, but we have slid into a pattern of yelling and screaming at our kids.  We've become angry at them, miserable at home, and on alert all the time.  We've slid backwards fast. 

The straw the broke the camel's back, so to speak, was when I asked my son what I had to do to help him behave, and he told me that I should take out the timer and if he behaves for 5 minutes, he gets a reward.  Yay for him for being able to identify what he needed, but I realized that - right or wrong - I don't have the energy to pull out a technique from that long ago, go that far back in time.  

My son has difficulty with social interactions at the heart of his PDD-NOS diagnosis.  With the new behavior that I've been seeing at home, I became concerned that the behaviors I'm seeing at home would start to seep into the few relationships that he currently has.  I've been lurking on this board for months, every night coming on to gain strength by reading posts from Bethann and Logan'sMom.   Bethann's story, specifically, about her son's difficulties affecting the way the other children perceived him in Elementary school is part of my decision to medicate my son. 

This week, I brought my son to a child psychiatrist, who prescribed Risperdol.  The first day, Tuesday, my son was sleepy early in the evening.  After that, he was OK throughout the day - happy, busy, engaged.  Since Wednesday, I've watched my sons playing together - without fighting - for the very first time in their lives!!!!!  I've listened to my son tell his brother that brothers are even more special than best friends - and show him how to give a proper high five!!!!!  I've observed my son watching a good friend's silly behavior, laugh at it - but not engage in it!!!!!  I've heard details about a lesson at school for the very first time!!!!!  And he's showing interest in friends who aren't right there right now - on a trip to look at the holiday lights last night, he asked if we could make one of his friends' houses a part of the route!!!!!  He picked up his toys without any reminders or threats - for the first time ever!!!!!!  Plus my sons, who normally have 3 fights before they even set off to school in the morning, have only had 1 fight in 3 days!!!!!

After four years of exhaustion, embarrassment, frustration, bitterness over all the "perfect" children in my community, a 50 lb weight gain, and a lot of drinking on week nights (something I NEVER did, not even in college), I feel hopeful. 

 

How wonderful that you're finally getting some relief!  I'm not personally familiar with Risperdol but if you're seeing good results that's a great sign!  It means that even if it ends up not being the medication for him you're on the right track and there should be something out there for him. It's interesting because many parents take things for granted but the people on this board don't! When we only have one fight in three days we KNOW how great it is!  Good job mom being a great parent and getting your little one the help he needs.  I am sitting here almost crying as I read your post. We too have been having behavioral issues with my son, meltdowns etc. He is soically ackward. We having a meeting tonight to find out the results of his occupational, speach and language evaluations to see what they might be able to do to help him. He is in 2nd grade and behind on reading and writing. Seems to generally get math, but is sloppy and inconsistent, so his teacher doesn't see that as well. We currently have him on Adderrall XR and I don't think it is working, or at least not consistently. As soon as we get the evaluation results, I may ask his Dr. about trying the Risperdol your son is on. May I ask about the dose level. I am constantly worried about my son's future and we can't keep heading down the path we are currently on. Similar to you, there tends to be a lot of yelling at our house because we just get exhausted dealing with him, reminding him, tip toeing around his angry moods etc. I love my kids, but often don't enjoy being their parent as a result of all the energy Kyle takes. On the flip side, he can be the most loving sweet kid most of the time (80%), but that 20% completely overtakes the good times. Back to his evaluation that I mentioned above... the early results they shared with me indidated they also wanted to explore the possibility of aspergers. While I do see a few of those traits in Kyle (especially the ability to look someone in the eye)... Kyle is social (just not good at it) and has a lot of compassion for people and does not seem overly fixated on any one activity (other than maybe video games - which seems normal for a boy his age), so I have a hard time believing that one. I will let you know what I find out tonight. Thanks for listening to me vent and thanks so much for sharing your story... it gives me encouragement!

Kim

Hello,

When I read what your son's diagnosis' it brought back memories. My son was given pdd from his pediatrician to refer us to Boston childrens hospital when he was 2 to see why he wasn't talking yet, nothing, no words at all. Early intervention though he was autistic. Well he wasn't just speech delayed and sensory and very adhd. I am actually crying at my desk at work. I remember these days like they were yesterday.

My son is 12 now and his latest progress reports are A+'s. I am so proud. He does struggle socially, but a lot is due to his immaturity from adhd. But the girls sure do like him.

Susan, our prescribing doctor told my that my son's true personality was overshadowed by his adhd but when he has his meds that is the real him. So remember that, you are seeing your son's true personality - gotta love him!!

Kim, please let us know how you do with the meeting tonight. You are in my thoughts and prayers.

Thank you all for sharing. And thank you for the comment on how I helped your son. That also makes me cry for joy!!

Logan'sMom, thank you for the advice about medications/dosing.  It's a comfort to know from somone who's been there, that I'm traveling in the right direction!!  From what I understand, it can take several tries to find the right medication. 

Kim1,  your description of your son as "social (just not good at it)" describes my son to a tee!  He's taking 0.25 mg of Risperdol 3 times per day.  This summer, prior to medication, I started giving him Nordic Naturals fish oil chews (they're fruit flavored) and put him on a *mostly* gluten free/casein free diet.  The only thing that's made a significant impact is the medication, though.  My son's preschool teacher introduced me to the ATEC tool to track how an intervention is working.  Although it's on an autism website, it's useful for tracking any intervention on ANY child.  https://www.autism.com/ari/atec/atec-online.htm

Bethann, regarding speech and language, at 2 1/2 my son's pediatrician assured me that it was "normal" that his only words were Mama, Dada, appy-da (apple juice), datu (binky), Thomas, Percy, Toby, Douglas.  I'll never forget those eight words!!

Kim1, good luck with your son's evaluation.  There's so much collective experience on this board.  I like that it seems like there's always someone who can help a poster make sense of what's going on.  
 

 

Those names sound like the trains on thomas the tank engine, my son's favorite (shhhh still is but don't tell anyone - he is saving his trains and table,etc for his own son some day  )

My son had no words. His sister born 20 months after him said mama dada before him.

He didn't start to jargon until he was well over 3.

The social stuff, is very adhd typical. They are years behind the others.

These boards are a godsend. When you feel all alone and that no one else understands you, there are these fine people who do! 24/7!

OH, mamtothestars, your story sounds so much like mine. The difference was I didn't get such early intervention. My son had lead poisoning when he was a baby. Early Intervention tested him and said he was fine. He talked and walked on time but had major social issues. He was very easily frustrated and had may tantrums and meltdowns throughout the day. It was like walking on egg shells around him. You just never knew what was going to set him off. Neither his pre-school or Kindergarten teacher seemed very concerned. He was the youngest in his class and they just chalked it up to immaturity. I have to say he never had a melt down at school.

I switched peds and spoke to his 1st grade teacher after he had been school a couple of weeks. She said she would observe and make notes for me. After that I talked to the ped who agreed he needed to be evaluated. We went to a dev ped who diagnosed ADHD and a ld in lang arts. He recommended meds. I was leery to start but figured I could try it and stop if we didn't like it.

Well, it was night and day difference. We started on Ritalin. He was a new kid... able to play, follow directions, handle disappointments, cooperate. He still had meltdowns but only in the evening when he wasn't medicated. He improved in school. I remember crying in the peds office 6 mons later because I wished we had helped him years ago.

There have certainly been ups and downs since then, but that was the first time we we able to see our son shine through his difficulties. As time has gone on he has been diagnosed with many other things beside ADHD including SPD, LD in written communication, dev coordination disorder, PDD-NOS and anxiety.

He has come such a long way. He is now 11 and I can tell you that back when he was 5, I never thought I see this day come. Every time I think things aren't going well I think back and realize how far he has come.

I'm sure you will continue to see many great changes in tour child and family in the months to come. I'm so happy for you all.

The answer is YES you are on the right track to finding the right medication/dose! My son's doc told us that if we saw at least some positive results then that was a great sign! It means that medication (in one form or another) will help your son.  It will just be a matter of finding the right one/dose. 

It's always a good idea when you're dealing with stimulants to keep a journal of behaviors.  Document when the best/worst behaviors occur in relation to when the medication was given.  This will help the doc make adjustments and keep the "rebound" away.  When you've hit the "right" cocktail he should be happy and successful at home as well as at school. No kid is great all the time but with the right meds he can be much better and more consistant.

Overall this is wonderful news for you!  I've spent my share of time on the floor crying but I aslo know what it's like to finally get some relief!  It may be tough to get it all worked out but you're in the right track!  Please keep us posted!

Karleboys, great suggestion to use a timer to teach my son to play on his own.  I've had success over the past couple of days with asking him to "entertain himself" for a 15 minute interval in order to receive a reward. 

Logan'sMom, your comment totally resonated when you said I should let my son watch TV because his brain needs a break just like I do.  I was always one of those moms who said "My kids will NEVER watch TV."  I know we all say that, but I truly meant it.  He didn't watch tv...until my 2nd son was born...and I don't think he ever would have if it wasn't the single way I could get a break from his difficult behaviors.  (Incidentally, giving him showers has been the other way I could get a break, and I've got to say that based on the number and length of showers he's taken over the years, he might just be the cleanest kid in town.  Or at least the pruniest). 

Kim1, yes, my son goes to several play dates throughout the week, and has since he was 1 1/2 years old, in spite of the fact that back then he was miserable throughout.  I am present for all of them.  He's really practiced at playing with certain children, and has difficulty generalizing that when he's with other children who he doesn't see often.  It's not perfect, but he's getting practice and I feel that practice, practice, practice is important.  Back when my son was 1 1/2 and miserable, only one mom ever invited us back for a 2nd play date.  She does not judge my child, nor talk about him to her children.  (She has become my best friend.) 

BETHANN, my son is obsessed with clocks, numbers, and calendars.  I've spent the past two years not indulging these interests, on the advice of my son's preschool teacher.  Her theory was that if he didn't have his intense areas of interests to disappear into, he would become more social.  At that time, his behaviors pointed more towards the autism spectrum.  I want to take your advice into consideration, though, now that he's older and some of the behaviors that are more spectrumy have disappeared. 

Thanks to all for your support, suggestions, and personal stories.  It TRULY makes a difference for me to hear from others who can say that it gets easier.  I am so grateful to everyone.   

 

 

Ok then he is numbers guy! Stay with it, it could be his future, MIT here he comes!!  Work with his strengths and make them stronger. His self esteem will only get stronger!!  Woot-woot! Love it! I've always felt it was ok to indulge obsessions a little bit. My son loves to set timers. It helps him stay more focused when time is broken up into manageable increments. Getting to press all the buttons, and count down the minutes is just an added bonus!

Hi all,

My son's Ritalin dose was bumped up on Saturday.  He is taking Ritalin and Risperdol.  The difference is profound.  My son was calmer, more focused, and paid more attention to us.

My husband and I noted to each other that this was the first weekend in memory that we felt rejuvenated.  Usually we feel stressed, irritated, hoarse (from yelling), and beaten down.  Many weekends there is at least one point at which I am sitting in the middle of the floor crying tears of frustration and hopelessness over something that just happened with my kids. 

This weekend my son was not perfect.  There was not a magical turn around.  His attention span is still short (much shorter than other children's).  He is still impatient.  He still wants to be wtih mommy and daddy.  He still needs a great deal of social prompting.  He is still very active.  But the quality of our interactions are so much better.  Here's the difference: On Sundays while my husband and I read the paper, our son usually is whining for us to pick him up, sit with him, etc.  This Sunday, he sat down at the table and came up with the idea (all on his own!) to make a Valentine for his friend.  It is a friend who he has a meaningful relationship with. He drew pictures of things that his friend likes.  He made the card almost entirely by himself.  THEN he made another card for another friend.  It was a nice time for all of us at the table. 

Am I correct to think that if the quality of our interactions has improved dramatically that I am on track to finding the right medication/dose?  Or should I be tracking quantative things like attention span at each toy, how hyperactive he is?  How did you know when you found the right dose?  Thanks!

 

 

 

You know when you son is successful. does he go to school? Can you ask the teacher? He is still young in age so he will be even younger with social, etc.

Most adhd'ers are years behind their peers, usually 2-3. That is why many prefer playing with those younger. Then they are on the same playing field. Medication will help with his inattention, impulsive behaviors, etc. but it will not make him act his age, so to speak. They are babies, espcially at your son's age, when compared to those his age without adhd. It takes a LOT of patience raising our children. Don't be suprised that your son is ahead of his peers academically or in aother way, like building/designing, etc. That happens often.

My son like to hang with his parents as well. He did LOVE trains at your son's age although. And then he moved over to legos. He also always loved puzzles. This stuff kept him busy for hours. I remember his playing with his thomas trains and having the videos on and my son singing along with them. Of course his severe  speech delay didn't stop him.  He still has all those toys. He is saving them for his own children some day.

Maybe try finding something your son obsesses over. For my son it was trains and legos. He still loves both to this day.

Hang in there with the shadowing son. there will come a day that you wish he was home!

Hello-

Kyle did not have much consistent attention for any toys until about the age of 5-6... then he fell in love with playmobile and could play that for a long time. He is also into leggos now and loves to build airplanes and towers out of them. He also developed an interest in doing puzzles between the ages of 6-7 and now likes art and coloring, which he hated as a pre-schooler. He also loves to play Wii, PS2 and DSi games. Hopefully your son will surprise you too over the next couple of years. I know it is frustrating feeling like you need to entertain them all the time. Are there any kids in the neigborhood or from school you can schedule playdates with? We usually have them at our house so we can monitor Kyle's behaviour.

Good luck and hang in there!

Kim

Update:  My son's inability to entertain himself AT ALL boiled over for my husband and I during the December holiday vacation.  Eleven days with a child who wants 100% attention from adults all day long was more than just frustrating: it was sad.  Instead of being with children, exploring, and enjoying new toys, our 5 1/2 year old followed us around all day, whether we were cooking, cleaning, vegging in front of the tv, sleeping.  When asked to entertain himself, we watched him dart from toy to toy, never attending to anything for more than 1 minute (other than TV; he could watch TV all day).  It broke our heart.  At the follow up with the psychiatrist, we added Ritalin.  I know what Ritalin does in theory - stimulate the part of the brain that regulates executive functioning.  But I don't know if it's a practical application to use it to increase my son's ability to entertain himself.   Will it improve his ability to maintain joint attention with his peers? 

I'm at the point on the medication merry go round where everything is up in the air.  The child who sends me flying into a rage over his behavior is also the same child who is full of smiles and generous with hugs and affection.  He is a gentle, endearing little boy.  But he seems like such a *baby* next to his peers.  Am I asking him to behave in a way that his brain simply is not wired to do?  I worry that I'm setting him up to feel that he's a failure.  At the same time, I feel that if I don't try medication that I'll never know if I unlocked his potential. 

It's nice to be able to share these concerns with people who understand. 

 

If your son's inability to entertain himself is caused by the ADHD then hopefully what the Ritalin will do is slow him down enough to be able to focus on his own, by himself, without needing mom & dad to help.  If it's working properly then he should seem much calmer and won't need to bounce from one thing to another so much.  He should be able to focus on toys by himself much better.  My son still bounces from one toy to another more than most other kids but he's 100 times better than he used to be!

Most AHDH kids (especially mine!) have a hard time focusing at all but when they finally can focus, they over focus (hyperfocus).  Like your son with TV.  My son was the same before meds with TV.  It was one of the ONLY things that would calm him or slow him down.  Even if he was hyperfocusing it didn't matter because at the time he was soooooo bad that we all needed a little peace!  Don't be afraid to use the TV when you need it until you get the meds straightened out.  I'm not saying to depend on it all the time, but when you're trying to get the meds right use WHATEVER works!  And his brain needs the break just like you do!

Hi Mamatothestars,

I just wanted to mention that you may need to teach your son how to play on his own.  You could start by playing with him and then settting a timer that he needs to play by himself for so long.  Many times children with a dx of PDD-NOS don't know how to entertain themselves.

You may also want to check out the Oasis book by Barb Kirby.  It also has a website that deals with asperger's syndrome which is on the autism spectrum also.  There are many good suggestions which might help with your son.

Hi Kim1 and thanks for the update!  It's good that you're going to see and OT.  My son has sensory processing disorder and his OT has been a huge help!  I think talking to the doc about switching meds is a good idea too.  If the Adderall is working you should definitely see a difference.  If you're not seeing one then the dose is wroing or the med is wrong. Good luck!

Hi Everyone-

Sorry for the delay in my follow-up! I appreciate all your comments. We were told that Kyle is in the grey zone for having aspergers and would need to see a physchologist to determine for sure. Neither my husband or I believe he has aspergers though, so are not going to pursue that at this time. He does have a sensory processing disfuction (there might be another label for this - we are still waiting for our hardcopy of the report and I can't seem to find my notes!). We are going to work with an OTT for that and a language therapist for the social skill issues. Hopefully these two interventions will help. I also want to talk to his Dr. about trying a new medication. We can always go back to the Adderral if the other options don't work or cause more problems.

Thanks again!

Kim