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New name, not ready to come out yet.
I feel like I'm drowning...
My 4 year old DS was diagnosed with "symptoms of Asperger's" Monday afternoon by a psychiatrist. DH and I were shocked, we knew there was something going on, it's why we took him in, but we never suspected anything on the Autism Spectrum. The psych actually said she would be comfortable with making an official diagnosis of AS on his medical record, but left it up to us. We decided not to at this time, so that we can pursue a 2nd opinion. We got a referral for a Developmental Pedi from his PCP, and the Regional Center is sending us an application at my request. I've been scouring the internet for information, and ordered a few books from Amazon (that I saw recommended on the Special Needs board).
All that has kept me busy. But the second I take a minute to think about it all, I get so sad and teary-eyed. DH doesn't want to tell anybody because he doesn't want them to treat DS differently, which I get, but I'm the type of person who has to talk about things. I've told my mom but that's it, and other than my dad, she's sworn to secrecy. Last night my youngest was sick and woke up a lot so I didn't sleep well. This morning, I just feel like I'm drowning, like there's a weight around my neck pulling me down. I took the boys for a walk and felt like I barely had the strength to push the stroller.
I don't know what to do next for him, or where to turn to. I fluctuate between accepting the diagnosis and being in denial. DH is in different place than I am, so unfortunately we're not really a good support for each other at the moment. So, I'm coming here to get it all out. I guess I could just use some hugs. Thanks for reading.DS1 born 3/2007. Diagnosed with Asperger's 7/2011.
DS2 born 2/2009.
This discussion has been closed.
Re: New name, not ready to come out yet.
all i can offer is hugs.
My sister is 17 and has Aspergers/ High Functioning Autism, and since knowing things have gottern so much better. Having a diagnosis means there are ways to move forward. Get support and be the best mom for little one.
Take it a day at a time. enjoy the happy momments.
First (((HUGS))))). Second of all call CARE parent network! They are a non-profit, it is confidential and the lady who answers the phone will let you talk to her for like an hour, even if all you are doing it crying. They saved my life. 925-313-0999 https://www.contracostaarc.org/html/care.html
There is a huge network of ladies on this board and in the Autism community that will be happy to reach out to you when you are ready. (((HUGS))))
Huge hugs!!
My son's final dx was not ASD or aspergers but we had a lot thrown our way throughout our months long assessments and diagnosis. For me, the hardest part of the process was the realization that the hope of his behaviors being a phase or things getting easier was immediately dashed. There are some amazing, inspiring mamas on this board who have shared experiences with you, I hope they respond. I am grateful for all of the wisdom they have shared with me.
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Many pps had some very wise words! My son was diagnosed w/ Asperger's a few months ago. I agree it is so hard to hear, even if you suspected. I wanted to be proven wrong, but then again- I *knew* he was different and I needed some help figuring out which way to turn for the help. Now with the diagnosis- I have a direction to go. I am sure you have heard that probably 90% (I am making up the #.... but you get the idea) of engineers would have been diagnosed w/ Asperger's if they had been tested back in the day. They may need more support and guidance w/ the social stuff (and behaviors), but your DS will get there!
Not sure if it is already on your list, but I recently read Temple Gradin's The Way I See It... it really helped me understand more about where my son is coming from and what he needs to support him.
Feel free to email me if you want to chat more. Many many (((HUGS))) to you. kellita71 at yahoo.
First I have to agree with other pps that you are not alone and feel free to come here and ask away. I have twin boys both on the spectrum (one has the diagnosis of PPD-NOS and the other has autism). I'm not going to lie in saying that I still have my moments where I just want to cry all day about it, but I have to remember to look at where we've come in almost 2 years. My boys have been in early intervention services thru our school district. One of them is graduating from his ABA program next Friday. It moves me to tears every time I hear something 'new' from him. I have been incredibly fortunate to have surrounded myself with amazing friends and family that have learned to understand and accept our life. We were in the same boat in not wanting to tell many people or family but in order for them to really understand our boys and what life is like for us, we had to educate them. We still have our struggles with family not quite grasping the big picture but I am no longer told to not worry about things anymore or that they will grow out of it.
If you haven't checked it out yet, the Autism Speaks website has something called the 100 days packet. I think it's a great packet to use and helps you kinda navigate through the first 100 days after a diagnosis. The books that I loved reading so far on autism spectrum disorders have been: Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm, Making Sense of Autism Spectrum Disorders: Create the Brightest Future for your Child with the Best Treatment Options by James Coplan, and The Autism Trail Guide by Ellen Notbohm. I have more on my list but this is a good start (as well as the Out of Sync ones).
There are other moms here who have used Regional Center and/or developmental pedis so they can share their experiences. Feel free to page me whenever you need more questions answered or need to vent. Hang in there!
Hugs to you!
Now I'm putting on my special ed teacher hat for you (I'm credentialed in elementary and special ed): While getting a diagnosis for asperger's is devastating, it's far better to have a diagnosis than not. This way, you can get him involved in early intervention now. Once you are able to get a handle on his condition, there is no reason he could not be mainstreamed into a general ed setting. People are far more understanding when there is an explanation for behavior. In addition, having a diagnosis now will make things so much easier for you when he is enrolled in elementary school. The last year I taught kindergarten, I had a child who we KNEW had an issue, but it was an uphill battle the entire year to try to get him diagnosed.
In the end, you are going to be your child's greatest advocate. The children who get the best support are the children whose parents fight for them. Make yourself and your child's issues known to your child's teachers, principals, speech therapists, etc. It will make a HUGE difference to the support he will get.
On a personal side, my cousin's son was diagnosed with Asperger's when he was about 4 years old. Today, he is going into 5th grade and he is a truly awesome kid. I know it hasn't always been easy for my cousin, but she wouldn't change him for anything!
Good luck!
HUGS!! My DD was diagnosed w/ High Functioning Autism before age 3. It was hard for me to hear and even harder for my DH to accept. My BFF has an older son on the spectrum so she became my rock. In fact she was the one who said I should get DD evaluated for speech delay and the speech therapists were the one who mentioned going to a developmental Pedi. We have our DX though a developmental pedi at Kaiser.
We got services through Regional Center 1st and then Regional Center and our local school district after DD turned 3. When school starts in Sept DD will mainstream into a regular Kinder class. At first she will have a one-on-one aide but we are hoping to be able to phase them out once DD is comfortable in class.
I understand where you are coming from in relation to DH. Even now my DH has a hard time discussing DD's diagnosis. He likes to pretend everything is ok. I handle all the school and medical stuff. It puts a greater burden on me but it is what works for us. DH has a problem because we all know there is something wrong w/ DH's brother but his mom won't acknowledge it. In his family they would rather ignore it than admit there might be a problem.
Feel free to post anytime!! We have all been there at the beginning stages and know how hard it can be. I'm very open about answering any questions about DD and her Dx. I find that talking to others about it not only helps them but it helps me too.
107 Read/listened to in 2011: 91 Books/16 Audiobooks
Read 2012: 33/50
Hugs to you! As you read, there are a few moms on this board who have walked this path just ahead of you and can offer guidance. Feel free to cry, vent, whine...whatever you need here. And know that we will send dust and hugs, good thoughts, and advice (when we can) without judgement!
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Hugs
This, exactly. I'm a general education teacher, but I have had many students in my class who have had this diagnosis - both mainstreamed from a special education class and on my regular roster, in both cases we found ways to ensure the students were successful. It's possible that your child will be fully functional in gen. ed.
There is a lot of great information out there, and teachers are much more informed of how to work with diverse populations. Rather then think of this diagnosis as something that will single your child out, think of it was something that will protect him. At school, you will have rights to request (or deny) special services, and can at any time call meetings if you feel his needs are not being met for any reason.
I hope this wasn't more than you wanted to hear right now. Know that there are lots of people on your side! Sending lots of hugs your way.
hugs to you. I'm nesting from my phone, so forgive my brevity. I'm in. the same boat as you - Aspy child with a refused Dx and a spouse who is not on board with telling family (although it has been 2.5 years now and now most everyone knows, except DS). Luckily he is on board with seeking and using private therapies (without a Dx on record, there aren't public services available). DS has has social skills classes and OT for sensory processing challenges, both of which made a big difference, as has our choice in preschool.
I'm happy to answer questions too or just be the shoulder of someone who has been there.
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Harmony Doula
huge, huge hugs!
I recently read a very beautifully written novel called The Kitchen Daughter - the narrator is undiagnosed, but has what she calls "a personality" and what others around her want to call "aspergers." I'm not sure if you want to slot the book into your (probably growing exponentially) reading list, but I did love it. One thing that I found interesting - the narrator has a "normal book" - she's taken clippings from magazines and newspapers where the word "normal" is used and uses it to remind herself that "normal" is subjective and is neither a good nor bad thing. A lesson we could all do well to remember, I think.
Feel free to use this board - there are so many moms who have been where you are, and there are even more like me who are happy to help - even if it's just by listening and sympathizing.
Good luck.
Sending you hugs.
I'd also get another opinion. I think more for the information you can get from another viewpoint in terms of tools and techniques. The more you know... the better you can be at determining whats best for your child.
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