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PDD-NOS and where to start!?

Posted by on May. 10, 2012 at 2:56 PM
  • 20 Replies

Hi everyone!

My name is Katie! I'm a stay at home mommy. I have a 3 1/2 yr old son named Peyton and 2 yr old boy/girl twins named Aubrey and Ethan. My husband is an insurance agent, which unfortunately caused us to move away from family last year. Just recently our son was diagnosed with PDD-NOS, which is in the autism spectrum. Being the parents we are, our outlook is 'bring it on'!!! We love our son so much and nothing will ever change that! He is an amazing child! There are many days that are challenging. Knowing a diagnosis has given us the tools to help him and to understand what we need to do as parents to better cope with situations. Before, we thought that maybe he was just acting out or didnt like being with other children. We knew things were different but to us, that was ok and we were going to work through it. I find myself many nights staying up extremely late and getting lost in the information that is out there about autism. I feel like as a parent I need to learn everything I can so that I can help Peyton. Sometimes it almost seems like an obbsession. I dont want to fail him. Today I read on the news how a 15 yr old boy was tasered by the cops because he got into an altercation at a theatre. My heart was broken and I broke down crying. I could see my son 11 years from now, in that news story. Not that he would get into an altercation, but what if something like that happened and someone didnt understand him. They cuffed him and sat him on the curb. When his parents came he was rocking uncontrolably. On top of all that, I read the comments below that people were leaving on the website about the story and it sickened me. People are so ignorant and uneducated. The horrible things they were saying about this innocent child and the names they called him. I thought we were in a society where people were accepted! It scares me to know that this is what my son has to grow up in. This doesnt help my over-compulsive addiction to fill my head with every possible piece of informaion I can to help my son and protect him from the monsters of the outside world. So, as I was googling along, I found this cafemom website. I've never blogged before. Ive never had a diary or kept a journal. But as I'm typing I'm finding this to be very decompressing. And to know that there are moms out there going through the same thing as me, brings me peace! I pray for all of us. We have a hard road ahead of us full of joy, love, pain and heartache. I dont know about you ladies but.... yes my husband is awesome and a loving man.... but its just not the same trying to talk to him about this. I personally think he is still trying to come to grips with all of this. I am a person who likes to spill out my feelings and men tend to keep them in. In a nutshell, thank goodness for this site and I cant wait to hear from you all soon!!!!

by on May. 10, 2012 at 2:56 PM
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Replies (1-10):
AllaboutMyboys
by on May. 10, 2012 at 3:09 PM

Hi... I am Vanessa (25yrs). I'm a mom to 3 wonderful boys. My oldest CJ is 7 and he was diagnosed with PDD-NOS at the age of 4. I understand what your going through and I'm here to tell you that your not alone. There are plenty of moms here that are in the same situation. Your son has a bright future ahead of him. Now that you have a diagnosis you could make the proper decisions to help him grow into a wonderful man. Let me know whatever you need, I am here to help. Xo

hugs

kajira
by Emma on May. 10, 2012 at 3:13 PM

Welcome - and glad to have you here. and I can understand your concerns about your son. Mine's 8 and we've dealt with similar things.


He has done bad things with out totally meaning too - when he's officially diagnosed (which he goes in next month to officially go through all the testing to get a real label finally), I intend to get him a medical bracelet that says autism on it. Police, and medical staff will have to take it into consideration when handling him because of it, which should help if anything ever comes up.

He's had issues on the bus, at school, with others not realizing his wiring - he tends to not be pretty violent most of the time, but could be pushed to appear that way if others aren't aware of his buttons or how things manifest.

our goal is to teach him self control and to walk away when he feels like that, or to ask for help instead of lashing out - help is fine. lashing out is not fine...

We have a similar attitude that you do "bring it on, life isn't horrible" and we are very hands on with our son and while some days are more stressful than others - I think our life is pretty fantastic.

wittmom3
by on May. 10, 2012 at 9:44 PM

Thanks you guys!!! I love the idea of a medical bracelet (if Peyton would allow it to be on). He is a very sweet boy. The only time he ever has an episode is when something is taken out of his routine. Like if his electronics (cell phone, ipad, computer) are taken away or if he gets frustrated with something. Other than that, he tends to stay to himself. He has a very select few people that he interacts with and shows affection with. He loves puzzles and video games. Anything that is a challenge for him, he wants to do it. Everything to him is "as a matter of fact". For example: the other day I had hard boiled eggs and asked him if he wanted to eat one with me. His response was "no mommy, thats a baby". I continued to ask him questions about what kind of baby and he went on and on... "its a baby bird... it lives in a nest.... the nest is in a tree... the tree is outside...". Let's just say I didnt end up eating the egg but I was highly impressed! He blows my mind at how smart he is!!!!

Do any of you have problems with sleeping at night? Peyton will stay up until 1-4am most nights. The doctor recommended sleeping medications but I'm terrified to do that. I am a 'no med' type mom and know that you can't 'fix' autism nor would I ever want to change who Peyton is because I love who he is and cant imagine him any other way. On the other hand I would never want to hurt him by being so strong against anything. I guess thats why I love being able to ask other moms on their expeiriences. 

Another thing is eating. Some days are good and others I have been supplimenting with a boost drink so he gets all the calories and vitamins he needs. He only wants the same thing every day 'peanut butter sandwiches'. Any suggestions?

I feel like I have a million questions!!!! It's a relief to know I have this support of friends!!!!

kajira
by Emma on May. 10, 2012 at 9:53 PM

we have good days, and we have bad days.

Generally, a set routine with a set bedtime helps - he doens't have to sleep but he has to stay in bed and "rest" - we have had some problems with my son getting up out of bed and wandering around, but being on a set schedule has helped.

Some mom's swear by melatonin - but I took it as a kid for similar sleep pattern problems (I'm naturally more of a night owl due to sensory input during the daytime being too much for me and prefering the quiet dark calm of night.) and melatonin didn't help me sleep and did make me react with aggression when I'm not a naturally aggressive person - some mom's have a lot of success, and i've heard a lot that have seen behavioral problems increase with it - with out the benefits... but it's a vitamin and non-addictive, so you can try it and see if it helps.

I found that being on a schedule or a routine basically trains my body to be tired at a set time, and wake up at a set time... having my morning ritual be the same allows my day to be less ritualized and more choatic or random if my morning ritual is completed before anything changes.

I find a similar reaction in my son having a set schedule and routines really make or break his day.

My son nursed for 26 months - because of his lack of solids, his pediatrician basically said "Wean him and he'll HAVE to eat solids." I was young and took her advice.

He went on a solid strike for a year. he landed on pediasure for a year, with the only solid he was willing to touch was kix for that year - going back, I would have nursed him through that year and introduced solids in a different manner and weaned slower...

hind sight though! he's 8 now. LOL

He's still a finicky/picky eater. there are some days where he likes food and other days trying to get him to eat and being worried about calories is a big deal. we offer regular snacks and meals, we always have the same food on hand that he has open access too and we encourage snacking.

Quoting wittmom3:

Thanks you guys!!! I love the idea of a medical bracelet (if Peyton would allow it to be on). He is a very sweet boy. The only time he ever has an episode is when something is taken out of his routine. Like if his electronics (cell phone, ipad, computer) are taken away or if he gets frustrated with something. Other than that, he tends to stay to himself. He has a very select few people that he interacts with and shows affection with. He loves puzzles and video games. Anything that is a challenge for him, he wants to do it. Everything to him is "as a matter of fact". For example: the other day I had hard boiled eggs and asked him if he wanted to eat one with me. His response was "no mommy, thats a baby". I continued to ask him questions about what kind of baby and he went on and on... "its a baby bird... it lives in a nest.... the nest is in a tree... the tree is outside...". Let's just say I didnt end up eating the egg but I was highly impressed! He blows my mind at how smart he is!!!!

Do any of you have problems with sleeping at night? Peyton will stay up until 1-4am most nights. The doctor recommended sleeping medications but I'm terrified to do that. I am a 'no med' type mom and know that you can't 'fix' autism nor would I ever want to change who Peyton is because I love who he is and cant imagine him any other way. On the other hand I would never want to hurt him by being so strong against anything. I guess thats why I love being able to ask other moms on their expeiriences. 

Another thing is eating. Some days are good and others I have been supplimenting with a boost drink so he gets all the calories and vitamins he needs. He only wants the same thing every day 'peanut butter sandwiches'. Any suggestions?

I feel like I have a million questions!!!! It's a relief to know I have this support of friends!!!!


MomOfOneCoolKid
by Gold Member on May. 10, 2012 at 9:55 PM

So many points you've made I can completely relate to.

The reading obssessively.

Yes this website allows be to talk about the most emotional part of my life -- my son.

Men take their time in coming to grips with 'autism' -- my hubby too

People are horrible (and yet in my religion, we're comanded to love them. God help me)

I fear everyday and night for my son's furture and then I give it to God and believe that He has great things for my son and then I worry again... lol

My son Gabriel is also 3 1/2.  Born Nov 2008. When was your son born?

 

Anyways, welcome to the group. You are so not alone :)

newmommy430
by Silver Member on May. 10, 2012 at 9:58 PM
Welcome!!! My son is 3 and he is severly autistic.

Have you thought about melaton. It is something your body naturally produces. People with autism tend to produce less of it for some reason. I asked my son's pediatrician and his naturopathic physician and they both agreed that it was safe. I'm a crazy lady so naturally I also googled studies on it. It has helped my son. He still gets up, but it helps him get back to sleep.

When it comes to eating, I give him something I know he will eat along with stuff I hope he would try. He surprises me sometimes and eats something I wouldn't expect him to.

I also give him "smoothies". I blend fruits and veggies with coconut milk (he can't tolerate dairy). I add probiotics and supplements because of his tummy issues.
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Russell4607
by on May. 10, 2012 at 10:48 PM

It is a very hard road but a road with light at the end of the tunnel I truely belief this. As my son's doctor has said they can possibly grow out of the difficulties they have with help. I know that with my son it has taken trying out different medications which luckly we have found one that works for him it took like a year though to get this far. We have him in special ed and he will have services over the summer. I have had to be very proactive in his care getting him into a doctor to even get a diagnosis can be a wait. After I got the diagnosis it took like 3 months to even get the school district to reevaluate him based on his diagnosis. But it was well worth it he got retested for the ADOS and other areas as well and it showed Autism/ADHD/ developmental delays which was really nice because it validated what I was saying. But because of me being proactive he will be getting the additional occupational therapy, skills therapy, and speech therapy and summer school which he wouldn't have before. Also I am getting him into skills therapy through frasiers and that will be a 6 to 8 month wait but well worth it, and then it will be 1 hour a week therapy sessions to help him, also I am getting him into additional speech therapy which will be 1/2 hour twice a week to help him. Also I try to reach him through things he likes to teach him things he has trouble with like letter, and numbers. I do coloring books storys, cookies in the shapes of numbers and letters, I do window clings he like's in educational things and we practice things together even while on the bus we will do flash cards. Any way you can reach them. To help him transition I use timers and tell him when the timers up we are doing this... it helps because it is a visual cue as well and it gets him ready to transition, also his school does pictures with him and they will show him a picture and tell him in five minutes we are doing this...it helps with the anxiety and the being able to switch gears and know what their doing. It helps so much. My son hates the timer but when I do it he knows I mean business and he listens and does what he is suppose to without a melt down otherwise he won't switch gears without a melt down and it's just a fight. These are just somethings I have tried good luck and whenever you need to just post something your not alone! Peace and god bless you and your family.

Russell4607
by on May. 10, 2012 at 11:11 PM

My son would do the same thing and not go to sleep he would even leave the apartment, trust me that one was scary. I put locks in and we changed medications for his PDD-NOS to quafincine which has helped, it's a medications that helps very active children who have a hard time settling down, it's not a sleep medication. He has a set routine each day which helps and I follow his medications and he does well for the most part now. My son use to go to sleep about 12am then get up at 2 or 3 am and go outside and watch movies eat go to the bathroom and wouldn't go back to sleep for like an hour or so which was very hard when I worked a lot. My son as well will not eat well still but even when he says he doesn't want to eat I will fix him something I will give him a choice of two different things he likes and if he doesn't pick then I pick for him. He will usually eat some even if I have to feed him I do it I don't care. He is so low on the height and weight as long as it is a calorie going in I am happy. And by me saying feed him I don't mean force feeding just feeding him like a bird as long as he opens his mouth for some. When he won't and he says no and means it then I let it go. You may think I'm crazy but hey you got to try anything that you can, it's like their so focused they won't even stop to eat! My son has finally put some weight on I'm jumping for joy over him gaining 3 pounds. My son is 43inchs and only 35 pounds and he had even lost weight with one of the medications we tried.

03071012
by Bronze Member on May. 11, 2012 at 12:20 AM
Hi, I am Rebecca. I have 4 girls, 8, 5, 2, and due May 24. My 2 year old was just diagnosed with PDD. She is so quiet and introverted by nature, that she doesn't act out or even seem autistic. But if she gets overwhelmed she disappears. Like becomes a shell of a person. It can take hours to days to get her to come back. She has words, but mostly memorized phrases we commonly use or tell her to say. Her spontaneous speech sounds different, garbled, and is filled with mostly babble. She is a very hit or miss eater. One day she will only eat cereal. And the next she'll eat more. Today she would only lick the peanut butter off her bread and refused to touch anything else. She is normally a good sleeper, but lately it has gone down hill. She was up last night 4 times before midnight and fought her much needed nap for almost 2 hours. She will hopefully start behavior therapy through early intervention at the beginning of June. It would be sooner, but we are slammed with appointments next week and the week after with her other medical issues, and the baby coming.
wittmom3
by on May. 11, 2012 at 3:28 AM

This is a reply to alot of your posts...

With eating, I've tried doing multiple choices and made them bite size items on Peyton's plate. And yes, I do the hand feeding thing too (your sooo not crazy lol). He gets so into what he is doing and doesnt want to unfocus to stop and eat. But as it was mentioned, whatever works!

Peyton was born July 3rd. When he was around 20 months (I only know this exact date because I just had my twins and was up all night with them), he managed to get out of the house and go down the street! Luckily my neighbors were both stay at home moms also and knew that I just had the twins and saw Peyton outside and brought him home. I forgot to mention that it was about 7am and I was asleep on the couch with the twins in the bassinet by me. I was in a complete PANIC to the least! I didnt recover from that trama for weeks! From that point on we put chain locks at the top of all the doors!

With Speech... every day I do a routine of 'schooling' where I do numbers, colors, shapes, letters, etc., with my kids and Peyton has always been very delayed. His sentences are in short 3 or 4 words. If he can't figure out a word or if he is upset/flustered, he will hum the word in place. Since working with a speech therapist at the doctors, they have taught me ways to expand his vocabulary and so far I have seen a slight improvement. Baby steps!

I have to say, it does take alot of time to get the ball rolling for help. I called our local DHS office and they didnt even know what PDD was! I was completely shocked! They had to call me back the following week (probably so they could educate themselves I'm sure). It's too bad. We meet with Peyton's principal and the AEA personel next week to get him ready to start pre-school. My heart throbbs and my stomach is in nots!!! I know he will be ok but as you all can relate I'm sure, he is my baby and I worry about him and how he will be... and how he will be treated. I just want them to treat him like a normal kid!

I do truely believe that everything happens for a reason and God has a plan.... sure wish I could see a preview of that plan :)

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