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Old 11-06-2008, 11:56 PM   #1
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Salen74 HB User
Unhappy PDD/Autism

I have a 4 year old son and he was diagnosed with PDD in 2006 at the age of 2 years. My husband and I have sent him for various treatments including speech therapy. He shows a lot of improvements in the following:


Eye contact, he looks at us always when we address him.
he sleeps very well throughout the night.
He plays with other kids in the neighbourhood the whole day and he enjoys playing with other kids. he knows the do's and don'ts of crossing the road. he goes to the shop and come back, he knows he must pick up toys after playing and he eats everything that we eat at home. he is not taking any medication only the vitamin suppliments. he writes his name and knows who he is and that he is a boy. he counts up to 30, knows and do his ABC to Z. he can immitate the dance from others, he can add small numbers like 1 + 2 and 2 + 3 in any order. he counts down from 10 to 1. he knows shapes and colours and different animals. He can spot the difference in objects and sing along with Barney and other nursary DVD's at home. He sing songs like Alicia KEys (No one) completely.

Recently the department of education assessed him and the only thing that is a problem is speech. If he tells you he wants to eat he will say " Mommy, I want to E..." you don't here the T. If he wants to go out side he says " i want to go A... side".

what can be the problem. What type of Autism spectrum is this?

Worried mommy

Last edited by Salen74; 11-07-2008 at 12:00 AM.

 
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Old 11-11-2008, 10:51 AM   #2
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linda1962 HB User
Re: PDD/Autism

Hi Salen,

My Step-Daughter was only diagnosed with PDD-NOS early this year and she's 16. When she was your son's age she too had a few things she would pronounce differently and we just thought it was cute. Her Doctor's were never concerned about it and eventually she learned how to pronounce them correctly. She would say things like Usgusting instead of disgusting and Bidamen instead of vitamin. My point is that I don't think it that unusual however I am not a doctor, just a mom like you, but my son is 6 hand he still says brudder instead of brother and baf instead of bath wif instead of with and I could go on but he does not have PDD. Now my step-daughter - she is a straight "A" student and has been since about the 6th grade (11 years old) and her little quirks really started affecting her at school this year. Was your son diagnosed with PDD and Autism as two separate issues because I thought the PDD is Autism AND Aspbergers together. I would love to talk to you about it more and learn how your son behaved to alert you that something was different. I could kick myself for my Step-daughter's struggles when I suspected she might be Autistic but we also didn't have primary custody so that was another set of struggles in itself. Anyway, I would love to hear more about your story and the diagnosis of your son when you can.

Linda

 
Old 11-11-2008, 10:57 PM   #3
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Salen74 HB User
Re: PDD/Autism

Hi Linda,

Thank you for the feedback, you don't know how happy I am to hear from
another mom.

My son developed well and reached all his milestones like any other child.
He said his first words and started imitating us at home. He danced with
Bunny and watched Winnie the Poo etc. He had ear infection at 6 months and
it was treated, he also fell of the bed while sleeping at around 6 months
and then he didn't cry or move, and we rushed him to hospital without delay.
The doctors told us that he was fine and we must report any sign that was on
the list he gave us. Nothing negative happened

At about 18 months just over night, when I returned from work something strange happened, he would hear
me from the gate and he would run to me. That day he didn't and I
called his name and he didn't look back either. Nothing occurred in my mind
that there might be something wrong. He changed the way he played and all
of a sudden he hated the noise of a Vacuum cleaner and he would block his
ears with his hands.

I thought the ear infection is back and I made appointment with his
paediatrician. He referred him for further testing to reassure me that his
ears were fine, the hearing results were positive. His condition
deteriorated and he suddenly started screaming when you bathed him, his
behaviour changed. A friend of mine suggested that I take him to one of the
hospitals (Tygerberg Hospital) they had an announcement on radio about
children who shows strange symptoms like hearing loss, behaviour problems
etc. I immediately contacted the hospital and they assessed him and the
results were that he might be Autistic, and at that time I had no Idea what
this was. They referred him for developmental assessment of which it was
confirmed he had PDD and it was in October 2006 at the age of 2 years 2
months.

since then we had to take him to the relevant professionals in autism and
tried to get the right school for him. also educating him at home using
picture language.

His paediatrician also did some tests on him and told us that the child is
highly allergic and that can cause the behaviour change and speech delay.
Secondly he reacts to certain types of foods of which we had to change his
diet at home. He is now 4 years and he copes well in a day care, there are
no reports of funny behaviour of which his teachers thought he might be
doing this because he sees his parents whereas if we are not around he
behaves well.

I tried to prove what they are saying and I kept him out of school for the
past 2 months staying with his nanny. She also came to the same conclusion
that he behaves bad when we are around and when we are not he is a good
child.

he was again assessed by the department of education last month and they are
happy with his progress except that his speech needs a lot of attention.

I hope this information helps, please don't hesitate to share your
experiences as well and as mothers, we can learn from each other regardless
of our professions.

Regards

Last edited by Salen74; 11-11-2008 at 11:02 PM.

 
Old 11-12-2008, 09:14 AM   #4
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linda1962 HB User
Re: PDD/Autism

Hi again Salen,

Your message gave me the chills. It sounds so much like my step-daughter and we just had no idea that she any condition. It's amazing when I reflect and then hear your story and just say wow - I wish we would have acted sooner. My Step-daughter was, what I thought, very stubborn. She would refuse to eat anything but peanut butter and jelly sandwiches. She couldn't stand to wear socks or underwear or pants. That grew into not wanting to wear anything clean, she would only want to wear underwear or socks if she'd already worn them but if they were clean she would have an all out tantrum and refuse to wear them. I had little experience with young children (she was 6 or 7 at this time) and didn't think much about it at first but wondered if she had some level of autism. She would also refuse to brush her teeth or wipe herself until she was nearly 8 years old. Her mother would be offended by any suggestions I made about her behavior and her Dad didn't want to rock the boat so we just did what we could to get her through this stage. We ALWAYS heard how wonderful she was when we (her parents) weren't around. That's when we thought that she was just acting out because of her parents divorce, and the remarriage of her Dad to me. She had some difficulties at first in school. If she couldn't do what she thought was the right way to do it she would just refuse and say I can't do it. She would never hug you (but allow you to hug her), not look at you when you were talking to her and couldn't stand loud noises but would then turn up the T.V. so loud we thought that maybe she had a hearing problem. Her mother took her for a series of testing for her hearing (she also complained about headaches a lot too) and they found that her hearing was fine.....some excess fluid but otherwise fine. They chalked it up to allergies! She started losing her friends around 10. She would be so obsessive with her relationships and ultra sensitive if her friend didn't return her call or she heard that some friends enjoyed a movie without her. She would just suffocate and demand their friendships. This just added to her acting out and feeling like no one liked her. Then she started getting tutoring for her school work and things changed for quite a while. She still dressed in really baggy, no clinging clothing and still struggled with hygiene but her grades started to improve a lot. Then she became obsessive about musicals. She watched them endlessly, bought only musical CD's and started to enjoy participating in theater at school. Of course we only saw this as a good thing at the time until we realized that this obsession was unrealistic with regards to her expectations. She thought she should always get the lead and was crushed every time she was rejected. It did not dissuade her, she started taking dance lessons and singing lessons too - she still didn't get the parts she wanted. She was good but not good enough to be a lead in a musical. We tried to encourage her to look at other aspects of theater like behind the scenes or directing but she refused that idea and continued her pursuit. Last spring, she was caught cheating at school (very unlike her but her increasing perfectionism with her school work made it difficult for her to complete the assignments so she fell behind and saw no other solution in order to maintain her straight "A" status), then she was again rejected for the lead at the spring musical and her friends rejected her so she went into a depression. She refused to go to school and then refused to bath or anything for nearly 2 months. At that point we put her into a "brat camp" and after they stated she had some emotional issues and should be evaluated we found out about the PDD-NOS. Everything made sense then! Although her mother rejected the diagnosis and has kept her from continuing her therapy so she's slipping back into her old habits. Because she doesn't live with us we feel a little helpless but are trying to get a better understanding of what's going on in her head. You are the first person I have spoken to outside our family about this. It gives me a sense of relief and hope that I can talk to someone else about this who understands the struggle with PDD-NOS. I love my Step-daughter dearly and can't stand the thought of her struggling to feel accepted and loved. She's back at school and again obtaining straight "A's" but is now refusing to come to our house because we wouldn't buy her an IPod. She says we don't love her because we don't buy her what she wants and needs. She won't talk to either of us right now and I really don't know what to do or say to get her past this. Our therapist says to give her space and time and she'll come around but I don't know if this is really what will happen. What do you think? I don't know what to do or what to say. My son, her 1/2 brother who is 6 doesn't understand why she got so upset about the IPod (he was there when she threw a tantrum over it) and why she doesn't want to come to see him anymore. I try to explain to him that she can't help it but gosh - how do you articulate illness to a 6 year old?

Anyway, thanks for listening. I hope to hear from you again. If you have any ideas or suggestions I would love to hear about them. Take care!

 
Old 12-01-2008, 07:49 PM   #5
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LesaJT HB User
Re: PDD/Autism

I am 45 yr old female with a 26 year old son with Asperger's. He is the most interesting and amazing person I know just becuase he is who he is. He has had lost of troubles and ups and downs but he is grown and made it through the hard times and got through puberty. He continues to amaze me with his thoughts and ways of thinking and looking atthe world. Lot me know if you need support or a seasoned mom to talk to. Happy Holiday's.

 
Old 12-01-2008, 10:18 PM   #6
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Salen74 HB User
Re: PDD/Autism

Hi Linda, thank you for sharing your story and it gives me hope to hear such wonderful things about your step daughter. Yes it makes a great relief to talk about this to other people as well. I came to accept the situation I'm in and I believe that Jehovah God will always support parents who are going through this problem.

I wish to see my son one day able to go out with friends as well to movies etc. I also fully understand that if they want something they expect to get it. My son is the same, he will ask for All bran flakes in the middle of the night with no compromise. It is difficult to explain to him why he can't eat breakfast in the middle of the night.

I hope you and your step daughter will sort out your differences about the Ipod. Maybe visit her where she is and tell her how much you love her. Sometimes they just want attention.

Regards

Salen74

 
Old 12-02-2008, 02:34 PM   #7
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linda1962 HB User
Re: PDD/Autism

Thanks Lesa, I appreciate that very much. How do YOU deal with the issues when they cannot seem to deviate from the immediate desire? What I mean is when she says she has to have this IPod for example, we cannot seem to come to a happy resolution - she digs her heels in and then stays angry until you give her what she wants. My husband has said absolutely no to this and will not budge (and I totally support that decision) and neither will she - I can't stand that she's alienated us but it hurts that she's alienated her brother too. How would you deal with this? She won't take our calls but my husband leaves her messages and I have thought about writing her but what do you suggest?

 
Old 12-02-2008, 02:58 PM   #8
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linda1962 HB User
Re: PDD/Autism

Quote:
Originally Posted by Salen74 View Post
Hi Linda, thank you for sharing your story and it gives me hope to hear such wonderful things about your step daughter. Yes it makes a great relief to talk about this to other people as well. I came to accept the situation I'm in and I believe that Jehovah God will always support parents who are going through this problem.

I wish to see my son one day able to go out with friends as well to movies etc. I also fully understand that if they want something they expect to get it. My son is the same, he will ask for All bran flakes in the middle of the night with no compromise. It is difficult to explain to him why he can't eat breakfast in the middle of the night.

I hope you and your step daughter will sort out your differences about the Ipod. Maybe visit her where she is and tell her how much you love her. Sometimes they just want attention.

Regards

Salen74
Thanks Salen, I will try my best to let her know that she is loved always and regardless of her actions towards us. It does make me feel better to have someone who understands the struggles we go through. It's just hard for people who do not understand Autism or Aspbergers.

 
Old 12-03-2008, 08:22 AM   #9
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LesaJT HB User
Re: PDD/Autism

Hi Linda. It is hard to say what to do for each person but here are some thoughts. It mihgt take tough love...Which it sounds like you guys are dealing with by not giving in. Most of these thoughts are what worked for my son (s). I have another son with ADD. I would say to wait it out before you "take her back" into your life. There needs to be written rules, consequences and rewards as to how she can earn the iPod. Thank goodness you found a way to "bribe" her with the iPod. Set up an attianable chart system of levels. At Level one she gets to watch TV and use the phone (or what every is easy). Level two is use thew computer, go out to eat once, and everything from the level one. Level three is another cherished item like go to the movies or earn money, say 5.00 toward the iPod and Level four is earning the iPod when she reaches this level. Make it work for her an maybe ask her what the rewarss should be.Keep a chart of stickers as to where she is in the system. If she throws a fit she gets one warning to go to her room and calm down or she loses a level. I hope this makes sence. There are good books for "touch love" and charting levels or level systems. How old is she?

You cannot "fix" the problem with the siblings time will help. My kids now on longer "hate" my son. They have grown out of that and see himfor who he is. Explain to your sonthat she is different and has problems. And that it is no one's fault.

Is she through puberty yet? If not this can be a difficult time. My son finally "grew up at about 19. He still has a lot of problems but we reward or bribe him as a give and take and he now understands this. I tell him if you want me to do this I need you to help me with that. He gets this black and white. Gray is too hard. I tell him that if he wants me to help him take his truck in to the shop (he drives) he needs to be ready on time and clean ( I remind him of what "clean" Means...Shower, wash your hair, and underarms and so on and brush his teeth). I oay him to help me out too. He loves this. But some times he expects his siblings to "pay"him too for favors they need. He is learning that favors are free for family, since we do them for himfor free too.
Wait it out for her to come back but let her know you want to talk about rules, respect and rewards and how items can be earned. Eplain to her that life is not free. Everyone has to earn things...Promotions, food, computers etc have to be worked for. And everyone needs and deserves respect in cluding her and her brother. Make respect be part of the chart or levelsystem. i.e no tamtrums as these effect everyone else and will be ignored. She needs to learn to got to her room to be up set. I am not sure this will work for you guys just thoughts. I also play a "game" called "I don't want to". I know this might sound harsh but it is very black and white and truely gets the point accrossed. When my kids don't want to put their laundrey away or turn off the tv to come eat I remind them that there may be times whe they want something and I "don't ant to too. The next time they ask me to do something I say "I don't want to" It floors them but I stick to it. The next time I ask them to put their clothes away or come eat and the say "I don't....." they stop and remember what happens. This may take a few times to get them to remember. I even went to the extent of putting sticky notes on "my stuff" for them not to use..i.e. My TV, My computer, me refrigerator, etc. Of those things they can do with out that are mine. They get it when they find that I had to earn this stuff to by working and follwoing the rules. Gosh I hope this does not sound cruel. It does work but takes time and patience. And in the end she gets to earn the iPOd but it may take a month.

 
Old 12-03-2008, 09:48 AM   #10
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linda1962 HB User
Re: PDD/Autism

Wow, thanks for the advice.....she's 17 and we haven't seen her since August so I know that because Christmas is around the corner she will be calling soon....at least that's how its been in the past. I know that sounds horrible but she really can be stubborn. Her Mom is not supportive of our relationship with my Step-Daughter so she enables this behavior and that too is incredibly frustrating.

I did note that you mentioned about making the deal with your son about showering etc...so this is a common thread with this condition? She's been a lot better about this but it can be a struggle. AND the time thing - she'll think nothing of it for you to wait until shes ready. When my son was a baby I used to pick her up on Friday afternoons to spend her weekend with us and I couldn't sit in a car for 45 minutes waiting for her to get ready. My son would cry every time the car stopped so I finally told her that if she wasn't ready when I got there that I would leave. Sure enough, it happened again and when I was about 5 minutes from picking her up she called me and said she wasn't ready and that she didn't know when she would be so I just turned around and left. That's when she decided that she didn't want me to pick her up anymore so she changed to having her Dad get her on Saturday and he would grouse about having to wait for her and would threaten to leave but never did.

So now I am encouraged by your message in that you said he grew up at 19 - I am so hoping that she will come around when she matures too.

Thanks for listening.

Linda

 
Old 12-04-2008, 08:40 AM   #11
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LesaJT HB User
Re: PDD/Autism

My son tells me all te time what a great mom I am and was. So appaulogises forall he put me through. I also negotiate with him. "After you take a shwer we will eat lunch" or After you brush your teeth I will take you to the mall". Or what ever she would like. DON"T give in or she learns if she holds out and throws a fit she will get her way. I would not feed him lunch until he showered. He does try now. He will come over and still be a little sweaty. We don't say anything since he tried and did it 75%. You have to find what "gets" her and us that as a bribe. Favorite resteraunts, food, mall, park, movies, etc. Take her when she is clean and clean clothes. Hope this helps.

My son perseverates on issues that drive me crazy so we discuss it and I say lets talk about it and then I won't discuss it with youa again. We he asks again I say "What did we decide"? He will tell me and then I say "right this conversation is over". My son needs blunt and to the point.
Good luck.
Lesa

 
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