New Mom needs support

iVillage Member
Registered: 04-26-2006
New Mom needs support
10
Wed, 04-26-2006 - 5:16pm

Hi there-
I recently found out that my 2 1/2 year old son has PPD-NOS (which I am still trying to understand) and am trying my hardest not to feel like someone just dropped a bomb on our house. I am a high school teacher who has had many students with autism in my class, which makes it very hard for me to see the light at the end of the tunnel for my son.

I have been trying to find as much helpful information as I can through the internet and my son's case manager through our school district. There just isn't enough.

I have trouble explaining it to others and understanding the specific spectrum diagnosis.

There is guilt, frustration, anger and tears that just won't go away. It is all I think about - I want my son to experience life with no limitations - and I feel helpless.

Is this how most people feel with the initial diagnosis? How do you take the first steps to getting info that helps? How long does the feeling that you've failed your child last?

iVillage Member
Registered: 03-26-2003
Wed, 04-26-2006 - 8:26pm

Hi there,

What you are feeling is not abnormal. Everyone goes through the diagnostic process differently. Often it is related to the grief process and going through the grief process but on a different level. In some ways it is easier than regular grief because that sweet same child is still there, some ways it is worse because it isn't a one time event, rather it comes and goes in waves sometimes but slowly it does get better. The good times get more frequent and the bad times get fewer.

There are times it still hits me when the kids struggle with something or some new issue comes out. But it does get easier over all. You learn to love them quirks and all. Learn to communicate with them in a more special way. You celebrate little successes so much more intensely than you would otherwise.

Big Hugs to you. It is hard when you know more than you should about the future. I worked with autistic kids before mine were diagnosed too. But remember that each kid with ASD is drastically different than the next. There is no limit to the progress they can make and what they can accomplish.

Heck, look at Temple Grandin for example. I bet her mom never thought when she was 2 that she would be a college professor, renowned author and sought after speaker. We don't know with any of our children what they will be able to accomplish. We just try our darndest to give them the skills they need to do that and reach thier highest potential.

Renee

Photobucket
iVillage Member
Registered: 02-20-2001
Wed, 04-26-2006 - 8:39pm
((((((Hugs)))))) What you are feelign is completely normal.

 


Powered by CGISpy.com

 

iVillage Member
Registered: 10-03-2004
Wed, 04-26-2006 - 10:05pm

Hi there and welcome.

My son is also PDD-NOS, now 8 years old and doing terrific. He also is NOT being educated in mainstream education, as a teacher, it might help you to know that sometimes alternative educations can be better for our kids than the mainstream of public education, which is sometimes without the resources and knowledge for how to truly teach our children well and to their true potential...

When my son was 2 and a half, he was just getting dx'ed. He was not dx'ed with PDD-NOS until many years later, but with a developmental delay dx, immediately we did get him therapeutic preschool, lots of OT for sensory issues, speech therapy, play therapy, and within months we began to see huge improvements. And we have continued to see huge improvements as we work with him, learn more about how he ticks, and as he learns how the world ticks and how to maneuver within it, as best he can from day to day. My son is a brave, funny, amazing, fabulous individual and he truly does not have limitations. Only challenges. And strengths.

As others have posted, the grief and pain is normal. What will halp the most will be getting active to make things happen for him, and as you are a teacher, you are ahead of the game on this one. You love to teach. You have no doubt had challenges before where you didn't quite know how a particular kid learned, and than figured it out. There can be enormous joy in raising an unusual child, as big a joy as the size of the pain, bigger even. Now you will be the team leader for your child's education, which will be unique to his needs, strengths and weaknesses and different from the education of most other children you know --- although by no mean all children, stick around these boards, there is great help in just knowing you and your son are not alone. You will be challenged as never before in your life, but the rewards and celebrations of accomplishments are the sweetest ever.

The best thing you can do is to surround yourself with support!!! I have found my very best support from other parents with children like mine. And focus on your child without comparisons and, as much as possible, without fear. There is no predicting in this life where any individual can be, ever. You are so not failing your child ... you are starting the journey of helping him, and that is the most valuable gift you can give him.

You can start finding out more information by asking everything you want to know here. We are many BTDT moms from all over the globe, and we can at least point you in directions to find out whatever you want to know, if it is knowable, that is... What is your school district offering you at this point? EI, home-based services, preschool, OT, speech? They may not offer all that can be gotten or needed, BTW, which may not mean you can't get more! We did, with a little pushing, get several more hours of OT a week during preschool, very helpful to ds' development but not initially offered...

Ask away. Let us know what you need.

(((((hugs)))))

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 03-26-2003
Thu, 04-27-2006 - 2:31pm

Hi and welcome. I'm fairly new here myself....7.5 yr old son was just diagnosed with AS in December 2004.....I never even heard the word Aspergers until October 2004. Yes, it does feel like a bomb was dropped on my household as well. Try to take solace in the fact that your son was diagnosed at an early age......much progress can be made with early intervention.....we are playing catch up here.....I wish I would have known early then 7 yrs. But I can't change the facts....I can only look forward.

I'm sure you have a lot of questions.......post away.....don't ever feel like you are asking a dumb question. This board is loaded with great, kind, supportive people who understand.

((HUGS)) and welcome again,
Christie

iVillage Member
Registered: 04-26-2006
Thu, 04-27-2006 - 4:58pm

Today is a better day, except for the cold we all seem to be getting. It is amazing how life never ceases to amaze me - we just keep going - snot and all!

My son is currently receiving speech therapy, and an autism teacher will be coming to our house on a weekly basis starting two weeks from now. Once he turns three, he will be enrolled in special ed. class five days a week throughout the year. The district we live in is not the one I teach in, but has it's own Autism program. The woman that tested Tanner worked at the state level for a couple of years, and they seemed to be well staffed.

My husband's co-workers keep bringing him information on special needs schools in our area (MN - Mpls/St.P), but I don't know a lot about them - as a high school teacher.

I am trying to find books that I can buy to get a start on all of this. The AS teacher we met with talked about picture boards to help - but our main concern right now is getting him to answer to his name - any suggestions???

iVillage Member
Registered: 04-26-2006
Thu, 04-27-2006 - 5:06pm

It is definitely a good thing that he has been diagnosed so early, but I struggle with what I should be doing to help him cope when I don't exactly understand what sets him off or what he struggles with since he has such difficulty communicating.

Did you notice little things about your son when he was a toddler? Everyone still thinks that we must have the wrong diagnosis. We keep hearing, "I don't see anything wrong with him." It took my parents a while to accept it - but now they are extremely supportive and want to learn what they can do to help.

How did you find out about support groups in your area? There is a list for MN, but it is short.

iVillage Member
Registered: 02-24-2004
Thu, 04-27-2006 - 7:52pm

Hi!

My son is Nathan and he's 7yrs old. He was dx'd HFA when he was 5 and in preschool. I knew something was different, but most people didn't notice that anything was different about him. He didn't really start talking til about 3yrs of age. He had a couple of words, but rarely used them. Full sentences didn't start til around age 4. But he was still pretty quiet.

It seems like you already have therapy lined up for your son...that's wonderful! And getting a dx early is also a fabulous thing. Getting my son to answer me when I would say his name....took alot of repetition. He zoned out alot...and still does occasionally. LOL Our kids need lots of structure, quietness, and repetition to learn. After we got his dx, I realized that there were many things that would irritate or upset him. If something was too loud, if there was a strange smell, or if the lights were too bright. Learning that his brain works differently, helped me to see things thru his eyes. I am now able to anticipate things that will set him off and run interference to lessen the outbursts.

This, of course, doesn't always work everytime!! But I've learned to be more patient, and talk more calmly and quietly to him. Using easy, simple directions...nothing to complicate things for him also helps. I can't think of anything else at the moment. But reading and researching on the computer helps alot too!

And for your last question, about the support groups.....does your city have a local autism society? I'm connected with ours, and they send me emails and such for gatherings, etc. Our city isn't that big, but I try to go when I can. Anyway, welcome to the board!!! We have lots of support here!!!

HTH,

michelle

iVillage Member
Registered: 03-26-2003
Fri, 04-28-2006 - 10:43am

Did I notice any signs when he was a toddler......not at the time. Looking back and comparing him now with his almost 2 yr old brother......there is a world of difference. Vaughn (7.5 yr old with AS) did not explore as a toddler. I never had to put locks on the cupboards or doors - he could sit for hours and play with one toy......I remember thinking what a good kid I had. He has always learned in a step progression (still does).....for example: speech.....he only said about 10 words until he was almost 2 and then BOOM (like stepping up on a step) he was speaking in 3-4 word sentences.....did the same with potty training.....nothing and then like a lightswitch was turned on, he was trained.

My family had a difficult time accepting the fact of his diagnosis (son's father has been the most resistant - son is from my previous marriage). But my dad got Tony Attwood's book "Asperger's Syndrome" from the library and read it. He called me after he was done and apologized for making me feel like I was a overly permissive parent for the past several years. He read a paragraph in the book that talked about being the parent of an AS kid in public during a meltdown......about how you can actually feel what everyone is thinking....."just give me 10 minutes alone with that spoiled brat and I'll straighten him out".......my dad said he had thought that exact thought on several occassions. They are trying and learning.....it will take time.

As for the support group, my son's school guidance counselor gave me the names and email addresses to our local support group. It was started by 3 moms from our school district.....all three of their sons happen to have AS. Our group is not limited to spectrum kids....it includes any special needs - downs, ADD, bipolar, epilepsy, etc. I found another support group for my basic area on Yahoo groups....there is a general AS board but there was also an individual board for people in the Greater Cleveland area of Ohio (I'm in a small, western suburb of Cleveland).

I am just starting to learn about my son and how he works.....I feel like a detective most of the time. I have learned that he NEEDS routine......when his routine is upset (even if it is for something fun) - it can cause a meltdown (my guy has meltdowns.....screaming, kicking, crying - he recently started to add hitting his head against things, slapping his face, biting his fingers.....not pretty). We have a routine chart hanging in the kitchen (and in his room and bathroom). He can visually see what is going to happen before and after school.....school has a seperate visual routine board for him as well.

Hang in there.....I know how overwhelming this all is. I think reading the posts here have helped alot. I have learned about some new books, therapies, websites, techniques, and ideas from these great ladies that post here. I have been posting at least one or two questions almost every week.....it is a good place to start.

((HUGS))....we're here for you,
Christie

iVillage Member
Registered: 02-20-2001
Fri, 04-28-2006 - 10:46am
My son didnt start asnwering the "whats your name" and "How old are you" questions until he was 3.5.

 


Powered by CGISpy.com

 

iVillage Member
Registered: 05-16-2006
Tue, 06-13-2006 - 9:27pm

I am so sorry. I just went through this back in April. The day my son got his "life sentence" Depending on your state there are agency's that get you with early intervention help and getting all you need for medical assistance etc. It's very over welming. The dr who dx'd my son gave me an outline of "homework" to help me map a course of action. AS for telling or explaining (my family still doesn't understand PDD!!!!) it's NO ONE's business unless you make it. Adam isn't that off but his behavior and speech delay is what sets him apart from other 3yr olds.
The best way to explain PDD is Autism as a whole is an Umbrella. Austims Spectrum disorders range from OCD to full blown Autism (kid with helmet rocking no speech).
When you give the worst case and best case situations it helps people understand.

I am loosing my mind between 3 agencies for support services.
As for you being a teacher and not recongnizing it don't blame yourself. I am still trying to get over my blame. I just know I am helping him one day at time.

Ask your pediatrican for guidance. IF you live in Pittsburgh Pa I could help with all the agency #'s
Take care and remember God has a plan.
God Bless You