My son has PPD NOS/ My husband refuses to accept it? How do I explain this to him and other people that don't want to admit his diagnosis?

Becky - posted on 10/01/2010 ( 6 moms have responded )

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My son Ethan is getting ready to turn 3. At 18 months he started loosing language skills and wasn't hitting developmental milestones. He became a basically non- eating person just picking at things occassionally and taking bottles of lactose free milk for nourishment. The biggest red flag was the temper tantrums that would last hours on end and usually end up with him banging his head or slapping himself. He also became a child who is extremely high energy and has major difficulties with sleep. He soothes himself by organizing trains and balls and watching things roll back and forth with his head on the floor beside them. After talking with the pediatrician several times, I was told that he was just strong willed and he would be fine, I just needed to beef up on my parenting skills. Two weeks after the pediatrician told me that I had to take him back in for a small cold. The doctor was talking to us and Ethan threw himself down in the floor and started one of his temper tantrums and was hitting his head on the floor all for no obvious reason. At that time the doctor saw what we had tried to tell him before and referred us to a First Steps program that provided evaluations and therapy services to children under 3 in Kentucky. While Ethan seems to have all the major characteristics of Autism, he is missing the piece where he lacks social engagement. He is very social with everyone and loves to make people laugh. He also has lightswitch characteristics which make him seem very normal to most people who only see him for a few minutes. Public places, uuuggghhh, why don't they make a sign that says could you all please dim the lights and talk quietly this environment overwhelms my son! So you guessed it, public places are out! I just find it too overwhelming to him and to me for that matter, I hate having to try to explain that I am not a bad parent that lets her son throw fits everywhere, he just can't help it. He also has the repetitive words thing down path. Trains are the only thing that he seems to find comfort in right now and certain PBS shows like Kipper the Dog, Thomas the Train, and Caillou.

So let me Fast Forwad to now! Ethan is getting ready to turn 3 and will be released from the first steps program to the school system preschool program!! So he has been getting individual therapy 4 times a week up til now. The thereapy has helped him tremendously and the fits are getting better and language skills are getting much better!!! The group got together and with the help of the licensensed psychologist and over 200 visits, they came up with the diagnosis of PPD-NOS. MY problem you ask? My husband (who is bi-polar) refuses to accept that my son has any issues other than some mild development delays. He believes in the iron fist of parenting with lots of yelling and spanking. And in feedig he wants me to force him to eat! Yeah good luck with that one! I DO NOT AGREE WITH HIM!!! I handle situations with Ethan with rigid schedules and redirection instead of fits, but every day inevitably a 2-3 hour fit (possibly 2-3 fits) will happen and it is overwhelming for my husband. He either screams at Ethan (which won't help) or he leaves to go out with his friends. Either senario is frustrating since I am not getting much support from my spouse. HE knows Ethan has issues but he doesn't want to think of him as having a special need. He thinks he'll just grow out of it. My parents watch Ethan a couple times a week for me to go to work and so they are completely on board and agree with the recent diagnosis, so I do have some support there. My mom even has most of his therapy appointments at her house because it's easier without my husband there. However, other family members think like my husband, they only see Ethan for an hour or two every couple of months for a family function and just think he is a brat or a terrible two year old.

So how can I get them to understand 4 licensed professionals worked with Ethan for a year and a half to come to this diagnosis. They saw and evaluated his progress weekly and know him very well. How can I win them over to my team? I do not want their sympathy, I just want them to understand that my son has a special uniqueness about him. I want them to stop saying that I need to Parent my child better so he will stop throwing fits, eat better, go to bed, sleep through the night, and play with other children.

It's nice to know I am not alone but I desperately need advice and help. I work 50hrs per week and handle everything at home along with Ethan's ongoing therapy, play time and high pitch temper tantrums that last for hours. I only am able to get about 4 hours sleep a night so I am exhausted and have few places to turn. I just need to know if anyone has any suggestions for me?

Any help is greatly appreciated.
Thanks,
Becky

MOST HELPFUL POSTS

Elzette - posted on 10/04/2010

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Wow reading your post it was as if i was reliving my last few years with my son Ethan. He is 7 now but also started with tantrums severe at 18 months. It also took a massive tantrum in the Dr's rooms for the Dr to get it and understand what i have been talking about. Eventrually at age 5 he was diagnosed also with ASD PDD-Nos. In the beginning also had problems with my husband but seing what makes a difference in how we handel things it has changed. The positive thing for us is that we immigrated to another country so no family members are close to us. The in law's also feels that he will just grow out of his "problems" For us the best thing was to be far away from family. It gave my husband and myself the time to learn to deal and work with the obsticles and we are doing fine. It is hard doing it all on our own but we have become a team in dealing with this and i fear if we had family constantly telling us what we should and should not do that our relationship would have been near non existing. You know your son better that anyone else, i hope that you find the solutions and that family will start helping and not always intervere with his treatment. He needs all the help now while he is young to give him the head start for school. We still have our struggles on a daily basis but i have seen my little boy transform to a lovely loving caring child



All the best for you and your little Ethan

Ava - posted on 10/03/2010

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I agree with Jeannette. Don't let him see any relatives that don't accept his disorder. It's not fair to him for them to deny a problem he has. You do what you need to do as a mother. If the father refuses to accept it, talk to a marriage and family counselor about your disagreement; the counselor will harshly encourage him to learn about the disorder and the importance of him accepting it.

Sheila - posted on 10/02/2010

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Hi Becky,

This letter is an excellent start. I would print it out, delete any reference to hubby....and then, I would show it to the person you are closest to who does not "get it." Then look right at them and say I am feeling so alone because so many people don't understand what this is like. I think it's wonderful that when you see Ethan, you only see the good things...but every good thing you see is because I am working like crazy to ensure he has the best quality of life possible. I need people to understand that I am fighting for Ethan's well being and if everything was "okay", the therapists and the specialists would not be wasting their time on a child who was perfectly fine. I want you to keep loving Ethan, but I also want you to understand that nothing is coming easy for my little boy.

Then, I would also have a pamphlet that describes the red flags for autism. PDD-NOS is within the autism spectrum...my son also demonstrates social awareness and is happy to see people...he is six now, but it was this social aspect of his character that led people to think I was an over-anxious mom. Truthfully, it is a spectrum and lots of kids on the spectrum are brilliantly entertaining and funny! They are affectionate and loving, and if you don't see them in their "wholeness" you wouldn't think there was an issue.

If people don't begin to demonstrate understanding, if they continue to challenge the diagnosis, and undermine your efforts, then you have some hard decisions to make. Is your life better off with them in it, or are they taking something away? If they are too much of an effort, stay away from them and keep your son away from them. Either they love the whole child or they don't. If they view him as a brat, do you really want that energy surrounding him?

As for your husband....well, if he is screaming at a child who is not yet three there is something incredibly wrong with him. Bi-polar is not an excuse for being a bad parent. If he will not agree to meet with a professional to discuss your child's diagnosis, to take some parenting classes....I would be asking myself is he doing more harm then good? I know this sounds harsh, but when push comes to shove, your child needs to be nurtured and your husband needs to "man up." I will always be the least sympathetic voice you will hear when it comes to men and their seeming inability to accept a spectrum diagnosis....tough on them. The children need support, not self-centred individuals who refuse to educate themselves....frustrates me beyond belief!!

Good luck to you Becky,

Sheila

Jeannette - posted on 10/02/2010

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dont go to the relatives houses or events unless they are willing to accept your son for who he is, explain to them that its a matter of comprimise more than complying for ethan and that if they are not willing to learn about his condition and try to understand it that they dont belong in his life you will be surprised just how quickly they turn around, routine is huge for these children and it also helps the more time you spend with the child and routines you put in place for them appetites and variety in foods increase with age as you are able to comprimise with the child more, if you can manage to work less hours (i say if because if you have no choice im not judging you) it will make a huge difference, these children dont connect with many people you may be the only one in his life whom will ever truely know "him"

temper tantrums can be defused with calm comprimising, sensory stimuli and distraction techniques, sensory diets can also be used for when ethan is in sensory overload desensitising noise, visual all sensory issues inc sleep patterns try trampolining hour or so before bed a bedtime bath with lavender and wrapping him tightly in a yoga matt and giving him a nice squeeze for minute intervals right before bed this will calm him down.

as for your husband i am in the same boat its a gradual thing your best bet is to print out the shortest most direct most detailed piece of info you can find which describes your child hand it to your husband tell him calmly to read it tell him if it gets to much when ethan has a tantrum to take the info leave the room and read it because until he accepts it he cant help ethan at all and his misdirected frustration with the matter when he gets angry himself only makes the situiation 100 times worse not to mention it puts a huge strain on your relationship too.

dont get me wrong my son is 10 now had the confirmed diagnosis for only 1 year knew definately for 2 before that and for 7 years thought for some reason i was the only pewrson whom really bothered to get to know him and i still have to remind my husband every say 6 weeks or so he only really got it about 6 months ago, my brother still doesnt get it but after telling him that i will not be seeing him until he atleast tries to understand what my sons issues are i have had a semi break through with him and he is trying his best, others are a little harder to crack but the key to it all the people around you, your son, yourself everything is patience and remaining calm its not always easy and sometimes you do blow up your only human but when your relaxed and in control things seem to fall into place alot more and they resolve alot sooner.

i hope i have been of some help and wish you all the best xx

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Becky - posted on 10/04/2010

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Thanks so much to all of you for the encouragement and thoughts on my situation! I have to agree with you all! I have set up a meeting with Ethan's psychologist and my husband and I so that she can hopefully explain the areas of concern that led her to this diagnosis. Last night Ethan had yet another sleepless night (which means mommy did too) and my husband was able to see again how difficult certain things are for Ethan. I met with 2 family members this weekend and explained to them some of the areas of development they don't often get to see that Ethan has an issue in, and after showing them with Ethan there, they seemed to come on board a little more. I still have several people to explain everything to, but all of your words of encouragement gave me the strength to stand up to them. I will keep you guys updated!

Amber - posted on 10/02/2010

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Your husband sounds a lot like my exhusband. My son was diagnosed at 26 months and his dad refused to believe it. You are doing all the right things! It's so important to hear that sometimes.

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