Comments for Raising Eli & Zachary + a little Princess

Comment on PDD-NOS Parents by Bernard

Bernard — Mon, 17 Jun 2013 19:49:37 +0000

I have said this before 100 times on the blog. The PDD-NOS child who is receiving services becomes a student of proper behavior to the point that they are more socially accurate than most “normal” children. Eli has approached kids and said, “Hi my name is Eli , do you want to play” and the kids look at him like he is a freak for the introduction. We teach our kids and force them to take what the psychologist or therapist thinks is appropriate behavior which turns out sometimes to be as inappropriate as it can possible be.

In the end, as they get older these lessons are required and the behavior is eventually correct but still can be socially awkward. Eli asks me in these situations what he did wrong, and I tell him nothing, that he was awesome and he responds that the other kids are weird. Funny how that works.

Comment on PDD-NOS Parents by Dirk

Dirk — Mon, 17 Jun 2013 19:20:39 +0000

Does anyone else think that we make a lot of demands on the PDD NOS child? I mean in comparison to typical kids the same age? ABA enforces please and thank you and eye contact, we read social stories about manners, etc. How many little kids do you know have good manners? You know what I mean? I don’t think therapists and even myself as a parent would be happy unless these kids were speaking like politicians and making eye contact 100% of the time. I’m not saying we shouldn’t be doing this. But to try and get a 5 year old to do something ALL the time just so he does it some of the time, it strikes me that most typical kids don’t do these things ALL the time. I don’t say this as a mental gymnastic move to say both sets of kids are the “same.” And I can only assume that maybe the gulf widens between the ASD kids and the typical kids as the grow older.

Comment on PDD-NOS Parents by John

John — Fri, 31 May 2013 20:33:30 +0000

Aileen. Go to your pediatrician and tell them your worries. They will insist you get your child tested. Go from there. The longer you wait the more worried you will get. Waiting only increases your pain and angst because not knowing for sure or what do will eat at you. Once you start there will be professionals to tell you what to do…

Comment on Happy Birthday by Bonnie

Bonnie — Wed, 29 May 2013 19:31:43 +0000

Each birthday is actually a milestone for your entire family, so happy birthday to you all!

Comment on PDD-NOS Parents by Tracy

Tracy — Wed, 29 May 2013 02:29:10 +0000

Jessica,
I can totally relate to you and your experience. My son is 5 now and he is the priority. I too, feel isolated and alone much of the time. I keep telling myself that it’s these important years when he is young before he’s in school that we need to maximize. We do play therapy and he has fun, we do speech and OT etc. The days and weeks fill up fast and there is no time for lunching with the ladies or hanging out on the patio for hours drinking wine like they all do. I forced myself to go a couple weeks ago and found myself not able to relate to them. All of their “problems” seem so insignificant to me. And we haven’t told anyone about our son, so I have to play along like everything is ok. I don’t have the energy for it. So, I guess what I am telling you is that you are not alone. You are an awesome mom who is prioritizing your child first. And for that, you and your daughter will be so much better off in the long-term. Hang in there and celebrate the small wins. You don’t happen to live in Minnesota do you?

Comment on PDD-NOS Parents by Jessica Lynn

Jessica Lynn — Wed, 29 May 2013 01:35:46 +0000

Hello!
I just want to start by saying that this blog you have created is one of the most inspiring and heartwarming things I have come across since my daughters diagnosis a year ago. I am a very active parent and I have completely altered my life to support my daughter and get her the help she needs to work through her difficulties. I love her so much, and it makes me proud as a mother to watch her grow day by day, but there are a lot of times when I feel totally alone. People don’t understand what I’m doing or why I’m doing it. They listen when you tell then you have a child on the autism spectrum, but the usual response is “oh I’m sorry to hear that” . That is one of the worst responses a parent could hear.. I feel like saying “it’s not like I’m announcing a death in my family or something, I am talking about my child! And why are you so ‘sorry’ to hear that?!” Ugh I don’t know if its just me being sensitive or not, but it really bothers me when I can not find one person to relate to. Reading this blog has made me feel like I’m not alone, I have read so many posts on here that describes the way I’m feeling as a parent. Even though i am so optimistic about my daughters future, there are days when I let my fears get the best of me. I sit up for hours on end trying to find answers that do not exist. I’m searching for an answer to my daughters future and the uncertainty really scares me. I just don’t want her to suffer, I want her to be able to relate to people around her, I want her to have a fun childhood, I want her to hang out with friends in high school, attend prom, graduate, attend college, date people, fall in love, get married, start a family, and just simply lead a fulfilling life. I want nothing more than to help her to live like anyone else. But there are those days when I just petrify myself and I worry that those things are not in her future, or that she will not overcome her difficulties. It is just so hard to deal with these emotional roller coasters you go on as a parent of a special needs child. Especially when you do not have people around you who can relate. I had best friends since I was little around up until I have birth to my daughter, then they just disappeared. And the few who did stick around barely associate with me anymore because my schedule is to hectic and I can’t do the things they want to do because my daughter comes first. I just feel helpless sometimes. My daughter means everything to me and I just want the best for her, but it is extremely hard to go through these struggles without a support team. So I am very thankful that I found this website, because even if I don’t know any of you personally, by reading your posts I feel like I can relate, which is something I have been yearning for, for quite some time now so thank you

Comment on PDD-NOS Parents by Aileen

Aileen — Tue, 28 May 2013 16:38:31 +0000

Hi! I was looking for comfort and came across your site. I have read most of the replies and have found the courage to face diagnosis. My son is 1 year old and I have noticed he was different somehow at about 6 months old. Before that he was totally fine. He was babbling at 3-4 months. Nowadays though, he babbles too little and makes vowel sounds with an either throaty or nasal voice. He does rasberry sound too. He flaps constantly when happy. I’ve seen him look at his hands and stim. He likes to play/turn the wheels of a toy car. He fixates on dark spots. He has started to cruise a week or two before his 1st birthday. He can’t walk yet. He has no comprehensible words. I wonder if he will ever have them? I want to get a diagnosis soon but I’m too scared. I love him so much and worry about his future. I cried today and prayed for strength. I have a 6 year old and was labeled gifted by his teachers. He worries about his brother not talking and asked when his words are coming out. I don’t know how I will explain to him that Micah may never have the words.

Comment on PDD-NOS Parents by Erin Bond

Erin Bond — Fri, 24 May 2013 13:48:23 +0000

My 8 years old son has been diagnosed with PDD-NOS in Dec. 2012. My husband and I want to give him the best and all the help and work we can give him. Right now he is in public school making A’s and a couple B’s. We are having issues with him wandering, not being able to sit still in class, distracting other students.

I have been playing with the idea of homeschooling. That way we can take him to what ever dr. appts needing to be taken too and getting him in programs to be around children on is level. My husband also has a job that could relocate him and it is affecting my son with him not being here. I am torn on what to do.

Comment on PDD-NOS Parents by John

John — Thu, 16 May 2013 16:04:40 +0000

Hi, One last comment for me today. I am still relatively knew to this life but one thing that seems to pop up again and again from some parents is the story that, for whatever reason, everything was fine and then a period where there was isolation happened or a series of negative events happened to a child, or a child lagged behind developmentally and everything has suddenly snowballed. This makes me think, and other parents have mentioned this to me as well, that the best way to view anything like this is as a delay or lack of a certain skill(s). And just like anything practice makes perfect, or at least improves. I would bet none of us could be the next Picasso. But if we studied for a few years, maybe even having to study way too hard, we could get pretty good or at least passable as an artist. So I’m just trying to get some skills going with my kid so that as he grows up and becomes the fully grown person he will some day be, he has the skills to enjoy what parts of life he can enjoy. My son may end up being able to “pass” as it were, and this may take another 20 years for all I know, or he may always be delayed. Who knows? But to do nothing helps nothing. A rising tide lifts ALL boats. If you view these things as a delay in skills it helps focus you, and I think allows everyone to enjoy their lives more.

Comment on PDD-NOS Parents by John

John — Thu, 16 May 2013 15:55:09 +0000

Hi Kevin, Get your son tested by a developmental pediatrician if you have not already. Try to remember that everyone has some level of behaviors that are on the spectrum (who doesn’t jump up and yell when something really really exciting happens, I’m bobbing my legs up and down right now, it’s all a matter of context). The developmental pediatrician can let you know where your child is skill wise and will provide a list of suggestions to raise any low skills. Once you have the response from the DP contact your local school district, or even before and see what services they have. Often school districts have a pre school with students who need a little help (speech, physical therapy etc) and with typically developing students (who are lucky enough to get into a free preschool! as a result) but your district may not have this. They may also offer therapy and will most likely want to meet with your son. Kids develop on their own schedules, unfortunately sometimes the world can’t wait for that so as parents we often need to help our kids catch up. My son is diagnosed with PDD NOS and at leat once a day I find it laughable because he talks, plays with kids, etc. Other times I worry. Sometimes I cry. I cry because I don’t know what the future will bring, but also that is a source of joy isn’t it? Because for so many of these kids on the spectrum 10-20-30 years ago they would have just gone through life. Maybe being thought of as quirky, or maybe not too bright, or maybe fiery, or maybe something really bad, or maybe as an eccentric genius. I think that part of what makes this hard as parents is that it can be seen as a mental disability, it would be easier in some ways if my son was in a wheel chair but was typical socially. It really would because certain fears would be gone. But what you have to remember is that the future is not written. We have to help our kids, any kids really, write the best future they can.