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February 09, 2015

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Alexandra Blum

all the best for this next year and i hope you feel the love. you've been missed, but your kids need you more than we do.

Kim

Rebecca, just found your blog (having trouble reading it on my monitor) but sending you hugs and best wishes. I've been through what you're going through. I sent you an email. Happy birthday!
Kim :)

Heidi Wells

So sorry to hear what you've been dealing with.
I wish you the best.

Ali Richter

My mother is a pediatric OT focused on sensory issues. Her colleagues do great work and there are many resources. I hope you find some answers.

wendy

Such a rough time and really do hope little Presley gets all the help needed and yes you have been missed so sending love out to you all xo

Faye

Wish I could say it will get easier, but I can't... My heart goes out to you and your family.

Leanne L.

Rebecca, I've been following you and Presley in your blog since he was born, so this is such a shock. I am so sorry to hear that you are going through this right now. This especially hits a chord with me because I also have a 6 year old son who has been (at first) diagnosed with PDD-NOS/sensory processing disorder, and then finally autism.

I went through much of the same as you did with Greyson. He went through the first 8 months of his life screaming and colicky. He was my first and honestly, surprised he wasn't my last! My friends were having such an easy time that I was sure that I was just not cut out to be a good mother.

I found out that I was pregnant with my second child right around the same time my son was diagnosed with PDD-NOS at 21 months old. It was an extremely stressful time because 1) I didn't know if my second child was affected (thankfully she wasn't) and 2) how was I going to manage another child and this??!!

It sounds like you are doing everything you can and should be doing right now by getting him evaluated ASAP and starting OT.

I know in some states, free public preschool is available for children with developmental disabilities, so that may be an option for you. They can set up an evaluation and eventually an IEP (individualized education plan) and he would also get his therapies (speech/ot/pt/aba) at school as well.

Also, you may be able to get help through medicare/obamacare to help pay for some of these therapies outside of school. I believe once your son is officially diagnosed with a developmental disability (I am not sure if it has to be autism), he becomes eligible for supplemental insurance to cover the co-pays.

If you ever have any questions, you can email me any time.

Hang in there. *hugs*

Leanne

Teresa R. Roberts

XXOO to you, sweet Rebecca.

Teresa

Amanda

Rebecca, thank you so much for sharing. I admire your crafting and your parenting. I have twin girls who were premie and I do know how two hours of crying feels. I'm sorry you had to go through that. Here is a hug for you and Happy Birthday (belated)

LoriAngela

Your creativity has given joy to so many! You are a good mom and your children are loved. Let no one diminish the experiences that you are going through. I may not understand exactly, but I had a "spirited" daughter who is now in university. I nod as I hear your story. So glad there is some official support for you. We are here, too. You are not alone.

Mo

Hi - came to your blog after researching some of your patterns. I hope things are settling down now, Presley is doing well with his new therapy, and you have some Rebecca-time. <3 :)

Kim A. Gordon

Hello, my name is Kim Gordon. I'm an autism mom and I know what you are going through.

My sons are 18 and 15. My younger son Ian is violent and destructive. He operates at a 2 to 5 year old level.

In January, he moved into a group home after 6 years on waiting lists. Last year we called the police 7 times. Ian was hospitalized 4 times. On one occasion, he hit a cop.

Ian should have been discharged into residential placement in January 2014, the first time he was hospitalized. This didn’t happen because there aren’t enough adolescent group homes in New York State so the hospital discharged Ian home. This happened every time he was hospitalized, no matter what hospital. Had we not taken Ian home, we would have been charged with abandonment.

We reported the matter to the New York State Department of Health on the advice of Social Services. The Health Department said they would investigate and send us a report. It has been nearly a year and we received nothing. The hospitals around here are nothing more than great big money sucking machines and the Health Department is a joke.

The waiting lists in New York State are growing.

Ian is doing much better since he went to live at the group home, but it is in another city over an hour away. He will have to change schools, but his new school district has not found proper placement for him yet.

The road you're on is long and difficult. You are right to have your child evaluated now, while he is small. The sooner he gets the help he needs, the better off he (and your entire family) will be.

I find it helpful to pray every day; several times a day when necessary.

PS: Don't feel guilty about not blogging as often as you'd like to. The same thing happens to me.

Heather Neufeld

Not to overwhelm you, but I can't resist adding a little note. I was in your situation in 2005 - new baby, two year old who screamed constantly, and 4 and 6 year old daughters as well. I "knew" I was "cut out to be a mommy" because my girls were great little people, but I was overwhelmed and confused about the little dude. He was diagnosed with autism, got excellent, excellent OT and speech therapy fast and early, Thank GOD!, and he is now a wonderful, quirky 11 year old. He has his challenges, mostly social and learning new tasks (like school agendas, how to behave in middle school, and taking on new skills) but he is one of my favourite people in the whole world. He has a quirky sense of humour and is loving and sweet and gentle. He never fails to hug me when he sees me. Presley will be someone you will be grateful to know - I promise! Patrick has made me a better person than I ever knew I could be. Many blessings to you.

Rae Lynne

I know this post is a couple months ago, but I was perusing my blog feed and decided to hop over. The first post I read referred to what you were struggling with with your son, and it hit a chord with me. I know a few others have shared and I thought I would as well.

Back in the fall my son Xander was struggling in school and with friends. We knew he was a sensitive little boy because he had some trouble in preschool but really seemed to come into his own in the summer. Then Kindergarten began and slowly but surely the behaviors got worse. My little man was an amazing baby, but as he got older, the issues started coming out of the woodwork. After our initial referral to a new pediatrician (the old one did nothing to address our repeated concerns) in October/November, we are coming out in April and the end of the school year with a better plan and more information than we've had all year.

My son is considered "at-risk" for an ADHD diagnosis, but not enough to be "clinically significant" or give him a true ADHD diagnosis. In fact, he really didn't fit any diagnosis the psychologist was testing for or watching for. I had asked about SPD, not knowing much about it and thinking it sounded SO MUCH like our little man. Next week he has his first evaluation with an OT and I am so relieved. He's on medication and that's helping some with the ADHD tendencies, but there are other things we still can't pinpoint. Regardless of what the OT says, I believe he fits into SPD in some way.

But within that, to finally have someone listening to us, to acknowledging what we're saying and trusting what we tell the specialists, is so relieving. Last year we took him to a children's clinic to get an evaluation and they told us he didn't really rise to the level of concern. We were proactive parents trying to get a head start and help our little boy. He's now 6 and the issues are worse and more difficult to handle (as you noted - the other day he threw a screaming tantrum for over an hour before he screamed himself to sleep just because we asked him to go to the bathroom). I remind myself every day that he needs ME to be his support and guidance, regardless of how others feel and to be his champion because he doesn't have the power or voice to do so himself. And within that, remind myself that I love him for who HE is. Not someone I want him to be. I see such a sweet boy, and I wish others saw that more often too instead of labeling him as "that kid."

Anyway - your post just really struck a chord because I've been searching for answers and finally found those who are going the extra mile to really help us and I can't believe the difference it makes me feel. It's meant him missing too much school, lots of doctor's appointments, trials and errors and patience, but we're making progress and it's so rewarding to see him shine. I home you're finding some relief with the help you've found for P. And I know how it feels to have your life feel as though it revolves around one child. My daughter is 3 and so easily just rolls with the punches. We're also expecting a little boy in July and sometimes it feels like it will be so overwhelming. But I know we'll handle it one day at a time.

I guess more than anything, I just wanted to say thank you for your post and sharing. It's reassuring to hear others talk about this stuff because for so long I felt so alone and so judged for what we were dealing with. But I know we're good parents and we're not the only ones who are looking for answers. Thank you.

Also - I can't wait to hear more about your books. And it's great to see you blogging again. :) Welcome back and fantastic job on some decluttering! :)

Ttmartin227

I have witnessed much as a teacher, But you are at the center of it. You have to be one of the strongest people in the world. Some people might not get that.

Jennifer K

Rebecca,
Holding you and your family in my thoughts and prayers. Presley and Maverick are fortunate to have such a loving and caring mom. All the best, Jennifer Keltner

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  • Rebecca Danger believes that knitting and crafting are a lifestyle, not just a hobby.

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