I feel alone a lot of the time

Michelle - posted on 01/17/2011 ( 12 moms have responded )

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My daughter is 28 months old, and has not been formally diagnosed yet. She is currently in EI and receives OT once a week, Speech two times a week and DT once a week. Her OT definitely suspects SPD, but none of them say one way or the other if they feel it's Autism (I completely understand why they don't say either way).
My daughter has been receiving services since she was 18 months old. I suspected something was wrong around 15/16 months and contacted EI right away. My second daughter is 11 months old and I started noticing something was wrong with my older daughter shortly after my youngest was born. At first I just thought it was her adjusting to having a sister, but then noticed she stopped talking, tiptoe walking, avoidance behaviors, anxiety, etc. Am I just letting it all get the best of me? I feel like I am doing everything wrong most of the time!!!!

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Laura - posted on 01/18/2011

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No don't beat yourself up. I thought autism with my daughter too. She has a lot of the characteristics. The specialist I brought her to thought autism as well but her superior said wait until further testing. Sure enough it's not autism because she's not pervasive. She has ADHD, behavior delay, global development delay, cognitive delay, speech/language delay, and sensory intergration with overlapping autism. They told me instead of getting one diagnosis we will be getting five. Ironically the treatment is the same as an autistic child. If you want to know for sure ask to be seen by a psychologist, speech therapist, hearing specialist, and have an ADOS done.

Amie - posted on 01/20/2011

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Michelle,

Below is the link to the wrightslaw.com Yellow Pages for Kids with Disabilities Directory. I have pulled up the link for Illinois for you. This is a great directory to have and I think that you will find that www.wrightslaw.com will become a really useful resource for you.
http://www.yellowpagesforkids.com/help/i...

I can sympathize with you feeling sad for your daughter. i HAVE BEEN THERE!! Sleepless nights full of so much worry that you feel sick. I know how you feel. The one thing that you need to remember is that at times, this is harder on us than it is on them. What I mean is that as parents we wish for an easy life for our kids and when they get cut we bleed for them. But what you need to try to remember is that your daughter is just simply "Sally", to her she is just simply herself! (Sally is just a name to help us work through this ;0) ) She is who she is! Perfect and Special and Loveable, Beautiful, Kind and Unaffected!!! No, life is not going to be as easy for her as you as a parent would wish it to be, but this this does not have to be a 'Sentence" for her either. I think a lot of that comes from pressures or labels that we create in our minds. Remember...to her "Sally" is just "Sally"!!
You are doing everything that you can to get her the help that she needs and my hope is that in time you will start to see huge milestones instead of inchstones with your daughter.
Stay strong Michelle! Whenever you start to feel anxious, in your mind, try to mentally wrap your daughter in Love and know how perfect she really is!
Kind Regards,
Amie

Jessica - posted on 01/19/2011

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I know exactly how you feel you are not alone in this, many of us out there going through the exact same thing or have been through it. My son is 4 1/2 he was born 2 months early but beat the odds and got to come home a month after he was born. he grew normally but he didn't walk until he was almost 2 and didn't talk. He wanted nothing to do with anything on his hands like food or dirt, he would freak out over a little drop of water on him, he couldn't eat some foods without gagging. I KNEW something was wrong but my family kept telling me that he was a preemie he was going to have some issues that it's not a big deal. He waled on his toes all the time and when he did talk it was just to tell you what kind of ca he just seen and I just had that gut feeling something more was going on. He now has a diagnosis of Autism Spectrum Disorder, Sensory Processing Disorder, ADHD, Anxiety, and Behavioral issues. Don't get me wrong I am not trying to say that your child is autistic. Toe walking can be a sensory issue too not always autism. I know how frustrating it is and in order to get my husband on board with me I youtubed videos of children with autism and showed my hubby how they acted just like our son and it wasn't until he was almost 4 that we started seeking help because I was all alone, nobody wanted to believe that anything else could be wrong other than he was slow due to being preemie. I still feel alone a lot because it's like I am the only one seeking any help to cares about getting the help. I wish you all the best and hope you know your not alone. contact me when you feel low and down I will perk you up :) Good luck!!

Amie - posted on 01/18/2011

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Hi Michelle,
You are definately not alone! I think the period of time before an official diagnosis is probably the toughest. It is a time that you are looking for answers to questions that you don't even know to ask or better yet, who to ask.
I have been there with my daughter and I work in a clinic in Michigan where we provide Speech and Language, Occupational Therapy, Sensory Intergration Therapy, etc... called Total Education Solutions.....where I see it daily.

I remember the relief that I felt when I finally was put in contact with the right person and began my journey to discovering what exactly was going on with my daughter. (This was before I started working with TES) I felt that the cavalry was coming and I was relieved that I did not have to climb this mountain alone.

I can, with 100% certainty tell you that you are not alone. I can also tell you that although you feel as if you are doing everything wrong most of the time, you actually sound like a mom that is really in tuned to her children.

Early intervention is ALWAYS best, so cut yourself some slack. For the past 10 months you have been getting services for your daughter! You are already a lot further along with this than you are giving yourself credit for.

What state do you live in Michelle? I have a ton of resources at my disposal and would be happy to share them with you if you need them.

Stay strong Mama. You are doing a great job!

Kind Regards,
Amie

12 Comments

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Venna - posted on 06/25/2011

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I can so relate to where you are at my son is 19 months and we have a ot 2 times a week and speech therapist 1 time every and pt every other week so and he seems to be getting worse, and it is frustrating that they can't tell you what is going on even though you can tell in their eyes that they have seen it before and they know from a mile away what it looks like. But they don't want you to sue them. so we are treating sensory processing right now.

Rebecca - posted on 06/17/2011

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You are NOT doing things wrong. Sometimes children are born wired a little differently than most. And it is very hard to deal with, especially as mothers. You are seeking help from professionals to help your child. This is the most important thing you can do! Denying your child has difficulties or pretending like her difficulties don't exist, that would be the wrong thing to do. In the meantime, love her as she is, and HANG IN THERE! This is not easy!

Stacie - posted on 02/28/2011

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I have gotten my husband and MIL to be more accepting of it and understanding of the things I am saying. My hope is to get my husband to come to some therapy appointments or read the book "the out-of-sync child" will slowly work on that. We're waiting for the early intervention OT to put together a sensory diet plan for us but I'm getting impatient and wish it was something I could figure out myself but I know it's too complex. So much to try to all get organized all at once it seems between EI, daycare, and the GI and other OT we see for feeding difficulty. I feel more like it is starting to come together though. Thanks for your words of encouragement.

Katie - posted on 02/26/2011

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I think I ca safely say that it is part of the process. We all want our kids to grow up without having to struggle or battle through life and when our plan for then is suddenly turned upside down its hard to cope with. Its even harder when you have a younger child that needs you but its so time consuming to go to all the therapies. I felt the same way you are at times and I think it will come and go forever. I have a 22 month old son that might be Autistic and does have a SPD. Early intervention and being able to be honest with yourself about your child is the key to therapy and it sounds like you have both so it will be just fine. Have faith in the therapy, it does work!

Stacie - posted on 02/17/2011

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I just joined this circle and still learning a lot. My daugther turned 2 in december and we had been seeing an OT for feeding therapy and the only diagnosis we got was failure to thrive with feeding difficulty. I started to question some recent behaviors and brought them to the OTs attention and had to ask the OT if SPD is what my daughter has. I think she had been treating her for that but didn't tell me that was a diagnosis bc she works under a GI specialist and I don't think he thinks SPD is a real disorder or diagnosis. Anyway, I am glad to have found this group and some answers and information. I too feel alone in this, my spouse, mother in law, and daycare will listen but aren't supportive and I feel they think I am making things up or making excuses for every behavior. My daughter's symptoms are mild no speech or motor delays. Tactile defensiveness is her biggest problem and after reading more about SPD i've noticed a sensitivity to sunlight and that she jumps up and down repeatedly and shakes her head back and forth repeatedly through out the day. We also can't seem to get started with potty training. Any ideas on what to do to help family members be more accepting?

Amie - posted on 01/26/2011

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Michelle,
You are very welcome. Please, don't be shy and contact me if ever you need any additional resources. I hope that you find Wrightslaw to be helpful.

In the mean time, stay strong and give yourself a big hug!

Amie

Michelle - posted on 01/26/2011

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I can't thank you enough, Amie. Your words are very encouraging and inspiring. Thank you for the link!!!

Michelle - posted on 01/20/2011

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Thank you so much for your responses. You really made me feel so much better, and not so alone. I'm sure you know the "stage" I am in right now.....I want a diagnosis, but at the same time I don't. I know what I need to do, and I do need to stop beating myself up. Being in that mindset is not helping my daughter any. I just get so sad sometimes because I know there is no "cure" for her, and I know this is going to be a struggle her whole life. Sometimes I am angry, sometimes sad, sometimes happy....you know where I am coming from. Many times I feel I am being "punished" for something. I do snap out of it.....for her!!! I'm babbling right now, sorry!!! Thank you again for your kind responses- it's much appreciated. I live in Illinois. Thank you!!!!

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