Post # 16
I am a mother to a 5 year old boy with severe, non-verbal autism and ADHD. He is on several medications just to keep him level enough to get through the day. His hyperactivity has been more difficult than the nonverbal autism as he’s gotten older, as it keeps him from being able to focus on things he’s trying to learn. He has sleep issues and his latest trick is wanting to strip from the waist down constantly. He’s also not yet fully potty trained. He knows what to do on the potty, but will not initiate using it. He also has severe GI issues like many kids on the spectrum.
I split time with my ex husband 50/50, week on and week off. This would be hard for any child, but especially one with ASD as they frequently require a lot of structure – it’s what makes sense to them.
I echo what some others have said. No matter where you child is on the spectrum, it is not easy. I cry and sob and scream at the sky on a regular basis. My suggestions would be 1) to find an autism parent support group in your area, as well as join some support groups on Facebook if you’re on there, 2) if he’s not seeing a developmental pediatrician, get one – and if he is but it’s not providing you with helpful approaches, get a new one; I had to leave my local dev ped and go to UVA because I did not feel we were getting enough guidance; 3) consider going to a child psychiatrist; this is something that has been suggested to me but it doesn’t make sense to me for a child who cannot talk or communicate in any effective way – but I think it would be helpful for your son; 4) have any doctors consider he might have ODD as well? Perhaps not severe, but it could help explain some of his behaviors like lying, bucking authority, etc. 5) If he doesn’t get ABA therapy, look into it – I don’t know if you have him in public school with an IEP, it sounds like he’s high functioning enough to certainly be in public placement, but that doesn’t mean he’s getting the supports he needs. At a minumum perhaps you can get in-home ABA therapy for him to work through some of the household chore-type issues you’re having 6) I know it is hard to connect, my son is actually a very happy and affectionate child but he’s so severe he doesn’t understand that he’s different. Perhaps your son has some awareness of this and it makes things harder for him, but he doesn’t know how to express that to you. The lack of physical contact, inability to play with toys properly/be imaginative, all of that is completely typical of a child on the spectrum. My son has never wanted toys unless he’s going to chew on something or spin a wheel. He also only cares about screentime. It is the way their brains process sensory input. We cannot understand it, but they also can’t understand how we experience things either. That doesn’t make it any less frustrating, I know.
I don’t know what state you are in or if you’re even in the US, but I do know that in the US every state is different in terms of program availability and other supports. You might see if there is a local parent advocacy group, folks who help parents find resources and walk them through the processes as they can be extremely confusing.
You can feel free to DM me if there is anything particular you ever want to talk through. Support from other autism parents has been a big deal for me, and I think it’s important to continue helping each other. This is a lifelong journey.
Post # 17
You have not ruined your son. You are working to find the right help for him and once you find it, you will be able to understand him more and help him to overcome some of these obstacles.
Post # 18
I suggest counseling for yourself. You sound beyond stressed which is normal when you have a kid who is more challenging. Find somebody to talk with.
My my daughter has adhd and it took a year of trying new meds every month to find one that worked well with her. Then more work on dosing.
But she’s impulsive and never followed directions well… she also had a brief bout of klepto due to the impulse issues, I thought she was normal until I had another kid who didn’t have the same issues.
But, getting the right meds and a 504 have helped a ton and it seems more doable now.
Post # 19
It’s not too late to get help and it can get better. See the behavioral pediatrician and arrange for testing so that you have diagnoses to work with. Explore other medication options. Ask for therapist recommendations for your son and for yourself–you need support, too.
Request an evaluation from the school as the first step toward an IEP. Parents in your support group may have tips for how to navigate your particular school administration, what services and support may be available through the school district, which teachers may be most helpful and which to avoid. Building a solid team with doctors/therapist/school support for your son plus support for you can make your lives so much better, Bee. You can do this. Hugs.
Post # 20
Lots of comments came in while I was typing my last response. In my opinion you need a different doctor. My son tried stimulants and was fine while they were in his system but when they wore of it was like he was crawling out of his skin. With kids like this you should try different medications to see if anything helps, and adjust dosing if you find something. A good doctor will only adjust or try one thing at a time. And whoever told you that you can’t diagnose autism because of the ADHD doesn’t know what they are talking about. They are often comorbid disorders. Yes, it can be hard to tell if a certain behavior is caused by the autism or the ADHD, but that doesn’t mean you can’t diagnose a child with both. There are very specific diagnostic criteria for autism that separate it from ADHD.
Post # 21
I don’t have children but I work with children and have a lot experience with children with Autism and Processing Disorders. First thing: Take a Deep Breath.
My suggestions for you are for you to reach out to your local resources. Even though you are the parent, you are not expected to know everything. If you don’t know what your resources are, reach out to your local DHS office. They will help you. Here we have programs that help with skill building for children specifically like your son. I would also suggest that you get both you and he into therapy. If you are losing your temper with him, that can have lasting effects. I don’t say that to scold you or say that you are a bad mother, but studies have shown that this does have an impact on children. Counseling for you will help you work through your feelings on your son’s issues.
As for the manipulative behaviors, a phrase that may be helpful for you is: Kids do well if they can. Based on your posts, your son has some need that isn’t being met and he doesn’t have the ability to tell you what those needs are, so he’s developed behaviors to get them met. From an outside perspective that looks manipulative but that’s not actually his intention. I HIGHLY recommend you look into Collaborative Problem Solving. Working with him to figure out what the real issues are, tiny bit by tiny bit may work really well for both of you!
I hope this helps. Keep your head up.
Post # 22
Bee I think you really need to get your son a proper psychological evaluation. Right now you are trying to parent him blind the best you can, but without an understanding of his condition/strengths and weaknesses cognitively. You say that he seems to be doing things just to piss you off, but it is very likely that he just sees the world in a completely different way to you and genuinely doesn’t understand what you want from him or why you want it. I think after he has been properly evaluated you can also explore the option of family therapy or parenting classes for children with his specific difficulties (or diagnoses).
Post # 23
I’m kind of shocked/relieved to be reading your post this morning as I am literally sitting here in the waiting room of the specialty pediatric hospital while my 15 year old is undergoing an all day neuropsychological evaluation. I know something is up with my daughter (besides her known epilepsy)- she has a neurologist, a therapist, a psychiatrist- but we needed further testing. She has not qualified for an IEP in the past (just barely above the threshold), but I am hopeful this will help her qualify. I don’t know if my daughter is on the spectrum- I just don’t know, but it would explain a lot. I think to myself, despite all the therapists and doctors- how can my 15 year old have gotten to this point and I haven’t gotten to the bottom of it? I feel like I have failed her and she is so close to adult hood I am scared for her future and what she will be able to accomplish. I really hope you are able to get more testing for your son and subsequently more help and resources. I don’t have any answers- just wanted to say I really know how you feel.
Post # 24
Not sure where you are located but have you heard of Brain Balance? It is a child developmental center that works with the different neurological systems and helps stimulate left brain / right brain development. They do brain and sensory exercises and games and I know it is a bit pricey, but from what I have seen gives great results to struggling children. I think you just need to find the right program for him to stimulate his interests!
Post # 25
No experience with your concerns, but there was a blog post on HelloBee about executive age and ADHD last month that you may find interesting.
Post # 26
Take away the tv and video games for a year. Tell him it’s because of his behavior. You can trust him to tell the truth or do his chores because all his attention is on screens. You might be surprised at what develops.
If he can lie he’s pretty high functioning. Don’t feel guilty about doing this. His disorder, such as it is, does not exempt him from being truthful or helpful.
Post # 27
You can’t punish or discipline a special needs child into compliance. Their brains just do not work the same way as a neurotypical child’s. The parents, with help from experts, need to figure out how to raise the child constructively.
OP, you need a team of doctors and psychologists (for you, your husband, and your child) to give your child a fighting chance going forward. If you PM me your city, I can help you find resources.
Also, follow “Diary of a Mom” on Facebook. She also has a website that has a wealth of online resources listed.
p.s. your child needs an IEP; he is entitled by law to the resources it will make available to him.
Post # 28
You do not sound like bad mom at all, not even remotely. You DO sound like a frustrated mom who has no idea how to handle your son’s difficult behaviors. You sound very overwhelmed and it’s not hard to see why, or why you would lose your temper and struggle to bond with your son. A couple of things:
1. Both an MD and a therapist who specializes in adhd/autism should be sought immediately. Keep trying till you find the best fit because you need reinforcements and specialists are a great resource to have
2. As overwhlemed as you are, your son is probably feeling the same way…he probably doesn’t know why or how his behaviors are so challenging either. And he knows or at least senses your distance as well…very scary for a child. Most of all he needs your patience and understanding; when in doubt this is your best route. Try your best to remember this, I imagine it seems impossible sometimes.
And of course Mama be kind to yourself. Parenthood is so damn hard but it’s impossible to get perfect so give yourself more grace. And of course, you need to be mentally and emotionally well todo the best you can do so take care of yourself first and foremost
Post # 29
keep your head up. You’re a great mom! You sought out professional help for his behavioral/health issues and are trying to raise your son to be a good person and not lie.
It seems you need more professional help. Just remember to take care of yourself. You’re doing the best you can with the tools you have. That’s all we can do!
Post # 30
snowdrops : Is he at private or public school? You shouldn’t need his physician to make a recommendation to start the IEP process, just chat with his teacher and explain some of your concerns and state you’d like to have him evaluated.
Alternatively, if it’s not affecting his performance at school as much, you could look up Speech Language Pathologists in your area (hospitals and private practice). They can work on pragmatics, executive functioning, following directions, and let you know what is normal 10 year old behavior and what is not. They also refer to child psychiatrists. I think it’s time to branch away from his pediatrician, it doesn’t seem like you’re getting the help you need there. Take him to specialists.
I think it’s important to shift away from the ‘i’m a bad mom’ mentality. You need support. And education. From people who are specialists and who know how to help children who are not neurotypical. It’s not too late to get help at all! If the people you are currently seeking help from are not helping go somewhere else. Keep advocating for your child until they figure it out.