Your Stories (of life with Developmental Disorders)
There are so many of you out there whose lives have been affected in some way by Autism Spectrum Disorders or other developmental delays. Do you have a child who is on the Spectrum? Care about someone who has a child with learning disabilites? Are you an adult who has Autism? The potential list goes on and on. This page is so that those who wish can share about how developmental disorders, neurological or otherwise, has impacted their lives. This can be a place for stories, questions, rants, education…whatever! Please feel free to include links to your own blog as well as any links for websites that you have found especially encouraging or educational. We are all in this together. I am thankful that through the internet we have access to so much information and have the means to connect with each other for mutual support.
So let’s help support each other AND raise awareness!
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My youngest son has been diagnosed as having an Autism Spectrum Disorder. He has begun Early Intervention and receives regular Speech Therapy and Occupational Therapy. We are in the process of trying to get him into a preschool special education program.
http://lifeasaplatypus.wordpress.com/2008/04/10/april-is-autism-awareness-month/
I have another son who is displaying some concerning behavior as well.
http://lifeasaplatypus.wordpress.com/2008/04/11/can-you-get-rid-of-me/
This is a journey that I have only just begun…
Other related links:
My first post about our journey
My email address is life.as.a.platypus@gmail.com
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1.
thecanvasgrey | April 12, 2008 at 4:01 pm
Thanks for inviting me to include our story. It may take me some time to get it together.
Until then here are some links from my blog you may find interesting:
Here is one for hope:
http://thecanvasgrey.wordpress.com/2007/11/13/112/
Here is one for recognition:
http://thecanvasgrey.wordpress.com/2007/10/15/the-faces-of-autism-learn-grow-glow/
I’ve got more under my “autism” category button or “autistic spectrum” on my blog. I’m kind of surprised when I look back to see how much I’ve written and never told my son’s story…completely…just bits and pieces.
2.
Mercedes | April 12, 2008 at 8:23 pm
I cant wait to read your story Deb! I have always wondered!
3.
Goldie | April 12, 2008 at 8:52 pm
“A Mother’s Heart”
This beautiful poem is by my friend High Hopes
http://2coolchicks.wordpress.com/2008/04/12/a-mothers-heart/
To Goldie,
A mother’s heart knows endless love.
A mother’s heart has a capacity to love many.
A mother’s heart can see the gift in a smile or a finger painting picture.
A mother’s heart can see joy in everything.
A mother’s heart has the capacity to carry large burdens, even when she is afraid.
A mother’s heart has courage and will lead her family through times of trial and adversity.
A mother’s heart is a guiding force in a family with wisdom, love and compassion.
A mother’s heart knows all love.
4.
Pixie | April 13, 2008 at 1:45 am
Question: Did anyone else have extremely pukey kids? Hayley (speech delayed) was vomitrocious. Around 6 months old she started vomiting up everything, and to this day has an extremely sensitive gag reflex. We had to feed her real food by 10 months old because the texture of baby and toddler jarred foods made her vomit. She was never cranky, in fact would be smiling and cooing while she would throw up completely undigested milk (formula) that she finished drinking 15 minutes earlier. She never cried or made any indication she was in pain. I spoke with an occupational therapist on the beach once (I talk to everyone…I have learned valuable things by sharing Hayley’s story), and she said mercury causes problems with the gag reflex. I have no idea if this was a separate thing Hayley was going through, or if it was tied in with the immunizations and her total loss of all speech and language. Anyhoo, if anyone has any information, thoughts, opinions, etc…I’m all ears!! Thanks!!
Also, Hayley used to have wicked tantrums. She would cry and scream and then jump up in the air, bend her legs, and come crashing down on her knees…on any surface! I can’t believe the kid can still walk. Her temper has totally eased up over the last few years, but she is still extremely sensitive and cries quite easily. A behaviour specialist said they are tears of futility and to let her have them…her Kindergarten teacher would like a second opinion. Oy. Anyway, Goldie, you had mentioned the rage and sensitivity you see in your boys…again, thought of the connection. Hayley is overdue for her 5 yr old immunizations…I don’t know if I have the guts to have her shot!
5.
Goldie | April 13, 2008 at 6:17 am
YES!!!!!! I think you may have hit on something there, Pixie! I cannot believe the overly sensitive gag reflex both my boys have! Both were speech delayed, both are infuriatingly/heartbreakingly picky eaters. Thomas can just LOOK at an undesirable food and gag. Percy will eat anything rough…crackers, bacon, wallpaper, sand, mulch…but not anything remotely slimy. he used to eat taco meat and applesauce & yogurt & then one day furiously refused.
I need coffee.
6.
Goldie | April 13, 2008 at 2:45 pm
Hi again pixie. What I was trying to say in my not-yet-awake state this morning was from a different angle than the one you suggested– there is a link between oral defensiveness and delayed speech…they are both related to the same sensory integration issues.
I knew that picky eating & late talking could be related, but didn’t know that other people dealt with the gagging thing too. Both my children were poor breastfeeders, btw.
Here is an oral sensitivity checklist
http://www.sensory-processing-disorder.com/oral-sensitivities.html
Now, as far as the immunization issue goes, I am so sorry you are scared. I totally understand. I get scared too. I would be irresponsible if I did not state that there have been studies that disprove the link between vaccinations and autism. And yet stories like yours persist. I wonder what the truth really is? I currently am more afraid of the risk of horrible childhood diseases so my children DO get vaccinated… and then every time I hold my breath for about a month worrying and watching. It is so terrifying. I will pray for you. I would be interested to hear what you decide.
I am so sorry you have to deal with the temper tantrums.
Oh, and “vomitrocious” ?? ROFL!!!!
7.
highhopes1 | April 13, 2008 at 3:51 pm
Learning disabilities – My dd does not have autism, but we have struggled with learning disabilities. There is dyslexia in my family so I have been on guard for this throughout her education.
She was very verbally advanced and her kindergarten teacher commented on this, she was way ahead of her peers.
I noticed towards the end of grade 1 that she was having trouble with reading and math, so we worked at it. I was still concerned and when she started grade 2, I went in and had several talks with her teacher and was told that everything was fine. In January I went in again and told the teacher I was concerned and felt that my daughter was struggling too much. I was told by the teacher that everything was ok and she was on track for grade 3. Enter in the frustration factor for me, I am seeing things the teachers aren’t. She has trouble with her printing and number formation.
Just prior to spring break I went in again and had the same discussion with the teacher. But this time I was told she was concerned and that there is a problem. Hello – I have been saying this for almost a year now.
The first thing I did was get her hearing tested and her eyes tested – both were fine. Then I had a meeting with the school’s learning assistance specialist, we agreed that my daughter should be in LA for both math and reading. Homework is a struggle and she gets very frustrated with it. We also have a tutor for math and reading.
I have talked to my doctor and we have seen a pediatric neurologist to rule-out any and all neurological disorders and she has been given a clean bill of health.
She does have a learning disability, but it is ’soft’ meaning she doesn’t really fit in for any diagnosable condition. But the fact that there is dyslexia in my family is undoubtedly playing a role here.
My problems aren’t as severe as those dealing with autism, but I have had my share of frustrations with the education system and trying to find help for my child. Not to mention the self esteem issues that it has raised in her, feeling less than her classmates because she doesn’t get something.
Thank you for taking the time to share your struggles and how you dealt with them. We all have struggles, some are just different than others. Your comment made me stop and think so I have changed the title of this page to reflect a broader diversity of developmental issues.
You know what makes me angry? When a child’s difficulty is not able to be “diagnosed” and doesn’t fit into the neat little box that PEOPLE created and thus the child does NOT get the help they need. Your daughter is lucky to have a mother who is such a strong, assertive, loving advocate for her learning. I pray that things will get easier & easier for her.
8. Labels & Symbols (and why I have an Autism Ellipse on my page) « My Life As A Platypus- Goldie’s Quest for Identity | April 20, 2008 at 10:30 am
[...] Your Stories (of life with Developmental Disorders) [...]
9.
fightingwindmills | May 3, 2008 at 10:19 pm
http://www.behealthy.org.uk/books.htm
This book has information on nutrition/diet and explanations for how to change your children’s eating habits (written by a doctor who understands that your children are picky about taste and texture). It was recommended by my friend CheeseSlave.
Thanks, FW! I look forward to reading it. Meals are constantly a battle here!
10.
Goldie | June 4, 2008 at 2:36 pm
If you haven’t already, read this touching story sent in by PPPJ…
http://lifeasaplatypus.wordpress.com/2008/06/04/choose-compassion/
11.
Anne | September 20, 2008 at 12:05 pm
I started my blog in 2003 to chronicle my life as a homeschooling mom. Now, five years later I’m still doing that, but now with two children who’ve been diagnosed with ASD. What a challenge. And with five kids, it’s always an adventure, too.
http://ourhomeschool2.wordpress.com
12.
Goldie | September 20, 2008 at 1:08 pm
Hi Anne, thanks for visiting! I am impressed that you have time, what with 5 kids and homeschooling and the other challenges you face! Great job! I can barely keep up with 2. I just peeked at your blog and it was pretty cool. Look forward to reading more!
I edited this post to reflect the fact that my son has now been officially diagnosed as being on the Spectrum.
13.
Cristy | September 21, 2008 at 12:20 am
I googled “hard to form sounds” speech and you were the only site that popped up.
My 5-year-old attended the public pre-school for developmental delay and has started kindergarten this year. Her speech has improved. The fact that she talks is an improvement, but she talks non-stop at home. She is still difficult to understand and has trouble or “forgets” to include most of the important sounds onto her words. She has also become much more social. For the first few years, she mostly tolerated everyone except me. She always wanted only me. She would only nurse, no bottles. She was super sensitive to everything since the day she was born. Now she wants to have friends. She wants to be “popular” and “fashionable” (her words at 5 years old)
Her teachers thought she would do just fine in kindergarten but, she brings home incomplete work everyday and most of the time doesn’t understand the instructions so she does the work wrong anyway.
She is not forthcoming with personal information but I asked her today if the other kids could understand what she was saying. She told me she didn’t want to talk about it. I asked her if she was embarrassed and she nodded. I am going to cry now because I didn’t want to cry then.
I can’t go into to all of it because there is so much but she is really starting to realize she is different. She wants so badly not to be. She wants all of these kids to be her friends and doesn’t know how and can’t talk to them because they can’t understand her. There is so much inside of her I don’t even know because I don’t know what questions to ask. She is in speech. The sounds just won’t come right out. F, S, L, K, M Sh, Ch, Th, etc.
Julia is the most beautiful thing I have ever seen. She hugs and kisses most of the time now. She didn’t when she was little. And she still won’t if she doesn’t feel it. You had to tell her you didn’t want those nasty kisses. Then she would give them to you. Or she would turn around and kiss your butt or hip when you weren’t expecting it. When she was three, we were lying on the sofa watching tv. I told her I really wished she would give me kisses. I said most babies give their mommies kisses and it make their mommies very happy. She just watched TV and didn’t even look at me. About 5 minutes later she sat straight up, took my face in her hands and kissed me so sweetly on the lips. She turned around and laid back down without looking at me or saying a word. It was then I realized she understood everything I say. She just takes some time to digest it and she couldn’t verbalize herself. She also may not recognize what is appropriate. It has to be spelled out for her.
Her issues are not nearly as severe as most of the kids that were in her class last year. She is considered more “typical”. The most typical in her class last year. I have not had her officially diagnosed as anything, I am not sure what that would do for her at this point. I just hate to see her struggling to fit in. Especially because she wants to so badly. I don’t think she needs to be in the separate class or that she even needs an aide in her class. I think the instructions need to be explained more clearly and she needs special accommodations to focus. She needs more speech. I am going to request these things in her IEP meeting.
I have accidentally said way more than I intended, but I just have so much to say. My older daughter presents symptoms, too. I am looking into Non verbal learning disabilities. Many of the cute quirks and funny things about her infancy and childhood are symptoms and she struggles in school, even though she tests high.
Point is…I found your blog and it was at the right time. I don’t want to put things on my kids that aren’t there. But you helped reassure me that I do need to continue to advocate for my kids, regardless of resistance by the system. I know them better than the teachers or testers. I can feel their pain and struggles and I am here to help them. I just want to prepare them for life.
Sorry I went on and on….It just all came pouring out.
Thank you, Cristy
14.
Cristy | September 21, 2008 at 8:36 am
Dear Goldie,
I know all of these posts were written months ago, but I wanted to tell highhopes that my older child has similar issues and that she could look into the nonverbal learning disability.
Cristy
15.
Goldie | September 21, 2008 at 5:31 pm
Cristy, your kisses story was so beautiful. Thank you so much for coming and sharing with us.
And my heart broke for your sweet daughter and the struggles she faces with friendships and knowing she is different. Those are some of the toughest moments to face as parents, when we can’t fix something.
My son skips syllables too. He used to just go “EEEeeeeh!” and would struggle SO hard to form words but that was all that came out.
You sound like a strong advocate for your daughter. I am glad you have an IEP meeting soon. Just a thought, trying to reframe a situation in a potentially positive light… I know you may not really want an aide and for your daughter, but her teacher may be stretched too thin and an aide can give your daughter the individual attention she needs. Teachers don’t seem to have time to give individual attention much anymore, even if they want to.
I hope it goes well and you find the staff accomodating. And if you don’t, keep on fighting! Good luck!
16.
Momma Knows | October 20, 2008 at 9:16 pm
My son is 8, and his official diagnoses are Developmental Delay due to Fetal Valproate Effect, Childhood Apraxia of Speech, and Developmental Dyspraxia. We’ve had a long road with him, homeschooling and alternating with public school. The public school isn’t the best setting for him, but that is where he is for the time being. School officials are condescending, act like my son has no brain in his head, then are “surprised!” when he does something on grade level. He is in a regular ed. classroom with pull-out. You can visit my blog, because there’s just too much to tell in one comment. I think I may add you to my blogroll, so I can find your site again. Thanks!
17.
Susan | October 25, 2008 at 3:17 pm
Thank you for the invitation to tell my story here, Goldie. I am a mom of five children, 15 yo dd, 14 yo ds, 13 yo ds, 9 yo dd, and 2.75 yo ds — the ds in his case means two things because he has Down syndrome.
Our life in the special needs world so far has been filled with people who have loved us and loved our son in such a way that our perspective on how much of a blessing he is has increased tremendously since that first day when we knew NOTHING about ds.
Kepler will turn three in early January and we are beginning the testing and evaluation process to see if he qualifies for services from our school system. My husband and I are not sure about sending him to preschool at such a young age, so we are just taking things one step at a time.