Intro, feeling hopeless and frustrated

[sarcaztic10]

I am ready to intro here and get the support of people who can understand our struggles. 

A bit about me first. I have 2 boys L will be 7 in January and S was just born in July. My home board is CAL and 3T/IF and now I am on PAL and July 16. 

H and I just recently made the step to make an appointment to get L evaluated for ADD/ADHD. He shows almost all of the symptoms of ADHD and has for a little while. It has become increasingly apparent since he started 1st grade. His teacher is also at the point where she believes its time to refer him. 

H and I are just so sad that L is struggling. We just got a call from the principal at his school. His teacher brought him down because she was fed up with him being so distracted and not being able to focus on anything. L has his good days and bad days as far as his attention goes and lately has been having more and more bad days. We first started making the connection to ADHD at the beginning of the year but we wanted to give it a bit of time to see if it was just him adjusting to no longer being an only child. At this point we are past the 'its a phase' time and into the 'this is who he is' and we need help.

H and I are especially frustrated that our Dr is booked solid and we cant get in for an evaluation until the second week in January. It is so hard to see him struggle, and I want to fix things for him but I cant at any time soon. I can see L get so frustrated when doing things because he just cant focus and then I see it in his eyes when he just gives up. I want him to succeed in life and now I am just so fearful that he will not get to dream big and instead will be crippled by this. 

[chickypoo2468]

Welcome, and breathe. January isn't far away and in the world of specialists that's actually very fast. I know it's frustrating to play the waiting game, but it's a part of the SN world.

ETA I hope that doesn't sound like I was being short. ADHD isn't my area but I wanted to say hi.

[sarcaztic10]

Dec 8, 2016 14:59:28 GMT -5 chickypoo2468 said:

Welcome, and breathe. January isn't far away and in the world of specialists that's actually very fast. I know it's frustrating to play the waiting game, but it's a part of the SN world.

ETA I hope that doesn't sound like I was being short. ADHD isn't my area but I wanted to say hi.

I didn't take it that way. In reality I know its actually a pretty short time but it feels like forever when he is struggling. I am very type A, lets make lists, and get stuff done ASAP type person and waiting patiently has never been my strong suit. One would think I would have gotten better at it dealing with IF and all those waiting games but I am still impatient! 

Thank you for the welcome! 

[cam]

Welcome. While you are waiting on the medical eval, you could write the school to request an eval through them to pave the way for an IEP or 504 if it is determined one of those would be helpful, which sounds like it would be if the teacher has taken him to the principal for being too distracted. Hugs! I know it isn't easy to sit and wait, but try to focus on what you can do during that time. Also, as someone with ADHD, it is definitely not something that can't be worked with to achieve great dreams.

[mirandah]

I'm sorry you're in a bad place. Waiting is awful. No kidding- we have been on a wait list for social skills at a clinic near us for almost a year. I still get updates. You find ways to get what you need by other means- your school should be able to provide a 504 eval at the very least. Get that request out in writing asap. There are federally prescribed time frames they need to adhere to. See wrightslaw.com. I requested Learning disability testing in September and it just got finished last week. As for a behavior intervention plan (BIP) and functional behavior assessment.

My son was diagnosed ADHD in first grade and is doing pretty well now (he also has ASD which is a primary disability). Medications have worked wonders. An amazing psychiatrist has been my lifeline. That's another loooong waitlist; we got lucky because he was a client of a certain therapy group for autism he had priority. Just keep asking and looking!

[Deleted]

It is my understanding that the school can start an IEP without the medical component as they do some testing themselves. I just ended up having the medical component first because it was over the summer before Kindergarten started, and it did help a little.

Waiting is so hard. I can't tell you how many times I have waited, sometimes for life saving surgeries where every minute felt like a year. But it will get there eventually and I think you are doing the right thing and it will help him.

As far as outcomes I know 2 adults with ADHD. One is very successful career wise and has a family and kids. The other one less successful career wise but still has jobs and her own business- does better with jobs with her hands, in a long term relationship. Both successful and happy adults. I think it really varies with the person, and makes things harder. But still possible to achieve their dreams. Both have bachelor degrees and one a masters. 

[mrsbuttinski]

Dec 8, 2016 14:35:39 GMT -5 sarcaztic10 said:

I am ready to intro here and get the support of people who can understand our struggles. 

Welcome to the best board nobody ever wants to join.

H and I just recently made the step to make an appointment to get L evaluated for ADD/ADHD. He shows almost all of the symptoms of ADHD and has for a little while. It has become increasingly apparent since he started 1st grade. His teacher is also at the point where she believes its time to refer him. 

Age 6 was when ADHD- the impulsivity and poor self regulation became incompatible with school at our house, too. 

H and I are just so sad that L is struggling. We just got a call from the principal at his school. His teacher brought him down because she was fed up with him being so distracted and not being able to focus on anything. L has his good days and bad days as far as his attention goes and lately has been having more and more bad days. We first started making the connection to ADHD at the beginning of the year but we wanted to give it a bit of time to see if it was just him adjusting to no longer being an only child. At this point we are past the 'its a phase' time and into the 'this is who he is' and we need help.


I'm sorry you are in that unhappy place as a parent. Better days are ahead. Promise.


You need to start the process of an evaluation at school today. Write a letter- not a phone call or email-  to the principal or head of special services requesting a multifactored evaluation in all areas of suspected disability. The book "From Emotions to Advocacy" has templates. The school will have up to 60 instructional days to complete this and either not qualify him or offer a 504 or IEP depending on what he needs. This will be the "second" opinion to whatever medical workup you do. Physicians tend to make meds available, but they're only 1 leg of the 3-legged intervention for ADHD. We chose to put behavior mods and rethink his school setting before adding medication and saw some real improvements though not as great as when appropriately medicated.

H and I are especially frustrated that our Dr is booked solid and we cant get in for an evaluation until the second week in January. It is so hard to see him struggle, and I want to fix things for him but I cant at any time soon. I can see L get so frustrated when doing things because he just cant focus and then I see it in his eyes when he just gives up. I want him to succeed in life and now I am just so fearful that he will not get to dream big and instead will be crippled by this. 

Do you already have a psychiatrist? That's the specialist for dxing behavioral conditions like ADHD. Sure, a PCP can dispense and screen, but they are not the best choice. Psychoactive meds are best in the hands of specialists, especially for younger kids who can't fully articulate improvements and side effects from them. It is also appropriate to have a psychologist do an evaluation if you can't find a child psychiatrist. Even though they can't prescribe, they tend to be a good partner for managing meds. 

[sarcaztic10]

Thank you for the warm welcome everyone!

@sarahwithanh, we are talking to the school and his teachers about getting an evaluation through them and trying to be advocates for him. It doesn't help that I requested that his teacher get him evaluated about 3 months ago but that didn't happen. H has a meeting with the teacher and will be talking to the school on Monday and will be requesting that he be evaluated again. This time we will be more forceful with them though.

mrsbuttinski, thank you for all of your advice!! We have an appointment with L's PCP in January and will be requesting a referral at that time. I just assumed we would need a referral to a child psychiatrist/therapist, is that not the case? I definitely want him to be in the best hands possible.

[Deleted]

Dec 9, 2016 10:38:32 GMT -5 sarcaztic10 said:

Thank you for the warm welcome everyone!

@sarahwithanh, we are talking to the school and his teachers about getting an evaluation through them and trying to be advocates for him. It doesn't help that I requested that his teacher get him evaluated about 3 months ago but that didn't happen. H has a meeting with the teacher and will be talking to the school on Monday and will be requesting that he be evaluated again. This time we will be more forceful with them though.

mrsbuttinski, thank you for all of your advice!! We have an appointment with L's PCP in January and will be requesting a referral at that time. I just assumed we would need a referral to a child psychiatrist/therapist, is that not the case? I definitely want him to be in the best hands possible.

Are you in public or private school? In public school I would write that letter. They have 10 days to respond. 3 months is not legal and would not fly. If you are in private school and they are dragging your heels of course push them harder but there is not the same legal requirements. The services from our privateK and public are worlds apart. Public is offering hearing services and speech free of charge. Private we pay out the wazoo and nothing is offered.

[seadragon2013]

I'm sorry that your family is in waiting-for-an-eval limbo. There really are better days ahead. It's an ongoing struggle to adjust to a diagnosis, but I know that for us, once we had an IEP and DS started receiving services for ASD, a weight lifted off my chest and I felt like I could breathe again.

I have several colleagues in my field (evolutionary ecology) with PhDs who have been very open about their ADHD diagnoses. My brother and a close high school friend both received diagnoses in college and are currently thriving professionally. Getting your DS help now is such a great thing and is only going to help him be the best he can be. ADHD does not define a person's potential.

[sarcaztic10]

Dec 9, 2016 12:10:23 GMT -5 @clarypax said:

Dec 9, 2016 10:38:32 GMT -5 sarcaztic10 said:

Thank you for the warm welcome everyone!

@sarahwithanh, we are talking to the school and his teachers about getting an evaluation through them and trying to be advocates for him. It doesn't help that I requested that his teacher get him evaluated about 3 months ago but that didn't happen. H has a meeting with the teacher and will be talking to the school on Monday and will be requesting that he be evaluated again. This time we will be more forceful with them though.

mrsbuttinski, thank you for all of your advice!! We have an appointment with L's PCP in January and will be requesting a referral at that time. I just assumed we would need a referral to a child psychiatrist/therapist, is that not the case? I definitely want him to be in the best hands possible.

Are you in public or private school? In public school I would write that letter. They have 10 days to respond. 3 months is not legal and would not fly. If you are in private school and they are dragging your heels of course push them harder but there is not the same legal requirements. The services from our privateK and public are worlds apart. Public is offering hearing services and speech free of charge. Private we pay out the wazoo and nothing is offered.

So, I sent a formal letter (via email) to the principal and vice principal and asked again that he be referred for evaluation stating that I had previously asked but nothing was done and the principal sent me an email back just now saying they are referring him to the school psychologist that does the evaluations. I will just stay on top of them until they do it but it's a step in the right direction!

[spooko]

So it really depends on your insurance and the specialist in question whether you'd need a referral or not. We've never used one for DS.

In the meantime since you're feeling down about the prospect of ADHD, check out "Superparenting for ADD" by Edward Hallowell. Our library even had it. It's a remarkably positive look at ADHD and may help your frame of mind.

[Deleted]

Check into your state guidelines. Our's is 60 days to evaluate. Good for you for putting it in writing as verbal requests don't count. They had to respond by 10 days in my state. All parent meeting had to have 10 day notice which we waived to do it sooner. The first meeting was like a pre IEP meeting where they talked sbout what they would test. I would look for that soonish. At that meeting I submitted medical info. Then I had to meet with the social worker and nurse. Then we had the final IEP meeting where they discussed their findings.

[mrsbuttinski]

Dec 9, 2016 12:10:23 GMT -5 @clarypax said:

Dec 9, 2016 10:38:32 GMT -5 sarcaztic10 said:

Thank you for the warm welcome everyone!

@sarahwithanh , we are talking to the school and his teachers about getting an evaluation through them and trying to be advocates for him. It doesn't help that I requested that his teacher get him evaluated about 3 months ago but that didn't happen. H has a meeting with the teacher and will be talking to the school on Monday and will be requesting that he be evaluated again. This time we will be more forceful with them though.

mrsbuttinski , thank you for all of your advice!! We have an appointment with L's PCP in January and will be requesting a referral at that time. I just assumed we would need a referral to a child psychiatrist/therapist, is that not the case? I definitely want him to be in the best hands possible.

Are you in public or private school? In public school I would write that letter. They have 10 days to respond. 3 months is not legal and would not fly.


A request not made via an official letter doesn't count as a request. It's crappy that they'd blow you off, but legally they can. A teacher would not be the appropriate person to contact- normally it would be a principal, CSE leader or head of special services. I always hand delivered mine and got the name of the individual who took it. But US Mail return receipt is a good option, too.


If you are in private school and they are dragging your heels of course push them harder but there is not the same legal requirements.


If you are in a private (parochial or indie) school, the procedure and laws are exactly the same for an evaluation. You write to the LEA via the public school head of special services. Even if he attends private school, he is entitled to a FME at no expense to you. Your private school doesn't have to accept an IEP created by the district, but sometimes they will do a dual enrollment under which your DC can visit the local school for which they are districted for some services. DS did a dual enrollment for MGW social skills at the local public; at the time the public school SLP was one of a handful who was trained around this- there were no private SLT providers available doing social skills. 


The services from our privateK and public are worlds apart. Public is offering hearing services and speech free of charge. Private we pay out the wazoo and nothing is offered.

This really depends. In my county the local IU also offers some basic services at indie and parochial schools. DS's old elementary is right next door to the RC parish education center;the kids walk over for some services like OT,but the SLP goes to them one day a week.

[bubbalicious]

For younger kids, I also like a developemental pedi for adhd. Not a hill to die on but handy to access other services if needed. Behavioral mods are a preffered treatment modality. So definitely get in the door of a psychologist asap.

Start looking at your benefits for all the already mentioned providers. Also look at your benefits for a neuropsych evaluation. You may want to consider after you have settled on various providers and have a dx.

Lastly ADHD will test your type A. Just a warning to allow yourself some flexibility with your little one. Type A the school stuff...that is where your superpower is best used.

[akafred]

Hi! Somehow I missed this post; I thought I had read it and it was about ASD. Sorry.

DD (7.5 in 2nd) has ADHD combined type. She also has SPD and anxiety, both of which exacerbate ADHD because their symptoms overlap tremendously. Her case is bad enough that it has been an obvious concern at least since she was 3, and we started the evaluation and treatment roller coaster at 4. Because she was so young, we had a hard time getting anywhere with professionals. They like to look at ADHD as a "school age problem."

Anyway, my daughter attends a private Montessori school, so I can't help much with the school issues. I would recommend that you seek out a psych professional to do the evaluation instead of relying on your PCP. In a perfect system I would suggest a psychologist who has access to a psychiatrist, like a joined practice or a private psychologist but who has a working understanding with a psychiatrist (check with the psychiatrist first also). After a few attempts, DD was finally dx'd by a psychologist, but his psychiatrist friend was full; no new patients. Actually we are in a unique (hopefully) situation here; at the time we were looking for meds a few months after she was dx, there was not a single psychiatrist in our decent sized city or surrounding area who was A) accepting new patients, and B) accepting DD's insurance, which is Medicaid -- she was adopted from the state. So we have been seeing a neurologist for meds. I recently learned my DD's brother sees a psychiatrist who is willing to see DD so we may switch to her. They got in because she is his older sister's psychiatrist also. Nice.

Anyway, a couple more things to think about. Yes, as spooko said, any book by Hallowell is a great idea. He himself has ADHD. He treats the condition very positively and treats your role as parent with great respect. You may find that a lot of books, some professionals, and society in general treat parents of kids with ADHD as causative. Not Hallowell. Another great set of books is "The Whole Brain Child", which teaches some simple brain science. My daughter's elementary teacher also teaches the kids brain science, and it has been empowering to both of us to understand what is going on in her amygdala and prefrontal cortex, etc. The more I learn about that stuff, the more I really feel like I understand DD better. There are also a lot of practical tips to help your child strengthen their prefrontal cortex, the area of the brain that is responsible for higher order thinking, logic and reasoning, and executive functions. It is still developing well into our 20's, but for kids with ADHD it tends to be underdeveloped. And then the authors of WBC also wrote a book specific to discipline called "No Drama Discipline" with more great suggestions.

There are some conditions that can mimic ADHD that you may want to familiarize yourself with. A big one is anxiety. For many kids, anxiety comes out as lack of focus, short attention span, defiance, opposition, etc. Sensory processing disorder can be comorbid with ADHD or anxiety. Oppositional defiant disorder - not one I would want to accept in a school setting as there are ramifications but it is fairly common with ADHD. Specific learning disabilities such as dyslexia, dyscalculia, etc- some children avoid these activities with behavior that mimics ADHD. There's another one I forget the name of (really long!!!) that is an emotional regulation problem.

I'd like to assure you that your journey is almost done...but it may just be beginning. If you trial meds, it may be a trial and error until you find the right one: And then you may find it stops working or has adverse side effects in time or with a dosage adjustment. In our case, ADHD meds (stimulants) caused a huge uptick in anxiety (which was worse than unmediated by far), so she is now on a nonstimulant that is doing little for ADHD but is helping her emotional regulation and anxiety tremendously. I'm not quite ready to go multi-pharma. Anyway, best of luck and I hope your journey is as smooth as possible.

[mrsbuttinski]

I also like Hallowell's books for reassurance that this is a manageable condition and one that has some positives.

I also like "It's So Much Work to Be Your Friend" as probably the single best book for understanding how ADHD impacts relations with friends, teachers and family.

[numbbears]

I just wanted to say welcome and that wait lists suck no mater what the time frame is for them.

[Deleted]

Dec 9, 2016 20:24:17 GMT -5 mrsbuttinski said:

Dec 9, 2016 12:10:23 GMT -5 @clarypax said:

Are you in public or private school? In public school I would write that letter. They have 10 days to respond. 3 months is not legal and would not fly.


A request not made via an official letter doesn't count as a request. It's crappy that they'd blow you off, but legally they can. A teacher would not be the appropriate person to contact- normally it would be a principal, CSE leader or head of special services. I always hand delivered mine and got the name of the individual who took it. But US Mail return receipt is a good option, too.


If you are in private school and they are dragging your heels of course push them harder but there is not the same legal requirements.


If you are in a private (parochial or indie) school, the procedure and laws are exactly the same for an evaluation. You write to the LEA via the public school head of special services. Even if he attends private school, he is entitled to a FME at no expense to you. Your private school doesn't have to accept an IEP created by the district, but sometimes they will do a dual enrollment under which your DC can visit the local school for which they are districted for some services. DS did a dual enrollment for MGW social skills at the local public; at the time the public school SLP was one of a handful who was trained around this- there were no private SLT providers available doing social skills. 


The services from our privateK and public are worlds apart. Public is offering hearing services and speech free of charge. Private we pay out the wazoo and nothing is offered.

This really depends. In my county the local IU also offers some basic services at indie and parochial schools. DS's old elementary is right next door to the RC parish education center;the kids walk over for some services like OT,but the SLP goes to them one day a week.

Thanks for the correction.  You are right of course.  I do see the public school go in and offer speech to the private school kids.  I think its mostly that I am just bitter that he wasn't in EI, so they said oh well we can't do anything until K, so he had a year that he maybe could have been getting services and wasn't. 

It would be nice if even in the private school that he goes to for aftercare that they can't take a 10 min meeting and show the teachers how to work the hearing aids or educate them on hearing aids and hearing loss, since I have gotten some uneducated comments.  We could have maybe done speech there through a private practice but we had no insurance at the time.  So mostly just my frustration coming through.  I guess in hindsight I should have had him do speech through EI, but the hearing loss at that time was fixed, which fixed the speech, so I thought he didn't need it.  But if I had known I could have had him in EI so there would be no gap between EI and school age.  Although with him being on the edge maybe they would have said he didn't qualify anyway. 

[mrsbuttinski]

That situation sucked all around @clarypax,