Help/Advice

[Invisiblemama22]

I'm so frustrated. I know this is an uphill battle but it feels more like climbing a mudslide. For 2 1/2 years I've been trying to help my son and I'm told to wait its too early or I sign paperwork and just wait. I need to understand my son in order to parent him in a way that he understands. I feel like I am failing him. We don't want to yell at him. I don't know what I'm doing.

[STEM_Dad]

Well, it's obvious that you're starting off right...you love your son, he matters to you, and doing what's right for him matters to you. So, you're reaching out for help, and that's a great step in the right direction.

Children with ADHD can be difficult to parent. They can be frustrating, whether they know that they are, or not. Hyperactive-Impulsive children can be challenging to parent in one direction, Inattentive children in another direction, and those with the Combined Presentation across the board.

If you don't mind sharing, what seems to be the struggle? Is it with your son's behavior? Is it with his school needs? It's it both, and maybe other things besides?

I have raised a daughter who as a teenager pushed every boundary, who o believe has the Hyperactive-Impulsive presentation. I have raised a son who has almost exactly the same Inattentive presentation struggles that I deal with.

I have another young son who has mild symptoms both ways, but has strong emotional traits of an ADHD child. (And another young daughter who seems mostly neurotypical, but maybe a little Inattentive. None are diagnosed, only I am.) So, I've seen a lot that ADHD can bring on.

And there are a lot of other parents is children with ADHD, with lots of experience between them.

What answers are you looking for?

[Invisiblemama22 in reply to STEM_Dad]

Its his behavior at home and at school. He has been labeled as developmentally delayed since the age of 3, he is now 5. We now see this is because he just can't focus. We are constantly repeating the same things to him and its very frustrating. At school he doesn't stop talking, constantly interrupts and does not stay on task. I have way more patience than my husband but lately even I have been very short with our son. I don't understand why he doesn't understand and I don't know how to say things or explain things so he understands. I'm so worried about him going to kindergarten next year and being so behind.

[STEM_Dad in reply to Invisiblemama22]

Since he's not even in kindergarten yet, is very hard to get an evaluation so young.

ADHD can indeed cause developmental delays, or can be combined with other neurodivergent conditions.

-----

First thing to know: people with ADHD mainly have a sense of time as "Now" and "Not now". (We don't fully overcome that... I'm 48, and it's still something that I have to be aware of with my own ADHD.)

ADHD researcher Dr. Russell Barkley is known for saying that people with ADHD need to have accomodations in their environment. I think this goes especially for young children.

For example: for a preschool age child, having a well-organized play environment can make it easier for them to know what's available for them as appropriate things to play with. When it's time to put something away, pick up one thing and ask your son "where does this go".

(If he's almost five, consider that he might talk like a child of at least give, but behave more like a three year old... that's how the social development delay might show up in a child with ADHD. That would require having patience with the child as if he is three, and not about to be five. Even though he may be intellectually advanced, his self-regulation will always be lagging.)

Some children (not even just kids with ADHD) may be reactive to various stimuli that we parents take for granted. My oldest daughter and a boy who was in Cub Scouts with my son both reacted severely to the same food additive (her by having an upset stomach, him by being triggered into a Hyperactive-Impulsive overdrive).

-----

There are special programs available, as another parent replied about. There are also ADHD coaches and coaching programs.

I have friends who adopted three boys as infants, and each one had a combination of ADHD and autism (and other conditions). I've witnessed their family deal with a lot over the years, and they did it all with love, patience (though sometimes they ran out of patience), determination, and integrity. (Oh, and a lot of prayer...I knew them from church, after all.) The first two of their boys are now adults, living in their own. The third is in high school.

There's way more information available now than when my older kids and my friends' kids were little (books, articles, videos, podcasts).

Two websites that you might find a lot of good information about are CHADD.org and additudemag.com which both focus on ADHD (with a lot of information for parents).

A generally good starter book is "Driven to Distraction", by Drs. Hallowell and Ratey. But it's more of an overview, and the tips shared in it may or may not help at this stage for your son. I do like that the authors include mentions of the impact on the family. (I may be confusing elements of that book with their later books... It's been over a year since I read it.)

For shorter videos to learn about ADHD (from the point of view of someone who has ADHD), check out Jessica McCabe's HowToADHD YouTube channel. (Special note: She credits her mom as the person who advocated for her and helped her get diagnosed.)

For videos from an expert in childhood ADHD, look got Dr. Thomas E. Brown, PhD. He provides information and advice, and good science.

(I advise avoiding videos by Dr. Daniel Amen. A lot of his claims are questioned by the majority of ADHD doctors and researchers. While he makes interesting points about diet, he seems to add a lot of conjecture to the information he shares.)

[Invisiblemama22 in reply to STEM_Dad]

He is 5 he has a late birthday, thats why hes not in Kindergarten. He has been in school since he was 3. I just want to understand him. But until I can find what is really going on with him that wont happen. His Dr did diagnose him with ADHD but will not treat him with medicine, which I am unsure about, until 6. She recommended a Behavioral Therapist, which I'm having trouble finding one close and takes his insurance as well as refer alls for OT, PT, and Speech. He has an IEP he is suppose to be getting services at school but the only thing they are really giving him is a small class size. Every road I go down is a dead end.

[Hidden in reply to Invisiblemama22]

That is a shame that your child’s doctor doesn’t want to try medication. Your son is 5 and even in the UK which is super conservative in medicating children with ADHD - 5 is the cut off point when a private doctor can prescribe (NHS waits until 6 years old).

Do you think there is something else going for your child? For example some kids with ADHD also have sensory integration disorder etc. It is worth to have an OT assessment to look at this and also motor coordination etc.

[momwithsonADHD]

I complete understand how you are feeling, I am in education and knew pretty early on my son had ADHD. I worked really hard with his primary care doctor to get the diagnoses but her knowledge around medication, parenting options and school support was very limited. The school kept holding off on assessments to young not enough supports tried etc. After my sons 5 suspension from 1st grade, I reached out to the UC David Mind Institute (Cali) and Stanford Child ADHD clinic to find support. Both took 6 to 8 months the hear back from them. Stanford was first and we started the process with them (Virtual), we didn't get into the clinic but they evaluated him and helped me navigate medication and other counseling supports they helped our primary care doctor with medication recommendations. This was all paid out of pocket because our insurance wouldn't cover and we are not medical. We are hoping to write off on taxes will see. Long story we played with medication and found the right cocktail for now. Working now with school for special education assessments. (2nd grade and 3 days of suspension and multiple calls for pick up from school). I also found an ADHD camp for my sons to attend in the summer once again very $$$ and paid out of pocket but check out Quest camps they have them through out US as well as other ADHD camps he loved it, he felt successful and happy and made some strong growth. Just a suggestion. I am loving the CHADD parenting courses and I looked for a few podcasts on ADHD and parenting these have helped. Including Raising Lions book for behavioral support. Keep fighting you know your child best and you are the best advocate for him.

[Invisiblemama22 in reply to momwithsonADHD]

What are CHADD parenting courses?

[missbonafide]

hiiii I totally empathize! My son is 6yo in 1st grade and we’ve been on this journey since he was 4 yo.

Even though your son is still in preschool it sounds like so he’s not school age yet but if he is having a hard time in preschool he should have an IEP. Does he?

If he does I highly recommend OT as part of his services if he doesn’t already get OT.

It’s key that he can work w an OT that is aware of sensory integration techniques. That should help him.

Another tip is if you are having a hard time getting a developmental pediatrician or ADHD provider/specialist you CAN visit a pediatric neurologist and they will help you w a diagnosis via questionnaire that both you and school would fill out. Then they’ll score it. If it scores high enough they will do diagnosis and can write a letter stating what accommodations they would recommend.

Once he’s in kindergarten if he is still having a hard time I would recommend a NeuroPsych evaluation to confirm and get clarity about everything.

Just know you aren’t alone.

[Invisiblemama22 in reply to missbonafide]

He has an IEP. I have referrals from his Dr that hr needs OT, PT, and Speech but the school has to do their own evaluation. We filled out paperwork for an ADHD clinic That said they would give us an answer in 2 weeks its been two months. Most places don't take his insurance.

[missbonafide]

your insurance should have a website where u can search for providers in network- look for pediatric neurologist

They usually have shorter wait time.

As for school as long as your request for Evaluation was sent in writing they must respond to the request within a certain # of days. Where I live they need to reply within 10 days. And once they give you the consent form and you sign it they need to be done w assessment within 60 days. It’s all special Ed law.

[Invisiblemama22 in reply to missbonafide]

Unfortunately his insurance does not work that way, I literally have to call every office and have them check if they take his insurance. His scho claims that they are still evauluating him for speech, this has been over a month now. The other referrals its been a couple weeks.