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When was your child diagnosed and did you miss out on any interventions?


Forum: Children with Developmental Delays and Disorders

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  #1  
September 6th, 2012, 05:51 AM
Carwen*Angel's Avatar Fly away on my zephyr
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This report is specific to autism spectrum disorder but anyone can answer the question as there may be similar scenarios.
Products - Data Briefs - Number 97 - May 2012

I found it interesting because Daniel was diagnosed at 4 and it left us with a very small window to participate in the local authority's "early bird" scheme which is like a parentcraft class for parents of autism spectrum disorder. They were not clear on the process or timescale for applying and we ended up missing out, and it's the ONLY thing offered by our local authority, so it has always sort of bugged me, even though as a teacher who has taught ASD children before I probably wouldn't have learned much, I may have met other parents to keep in touch with and support each other.

What age was your child diagnosed with their particular delay, and did it mean that you missed out on anything?
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  #2  
September 6th, 2012, 01:00 PM
TreeTog's Avatar Love is in the Air!
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Location: La Porte, TX
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Ryan got his RX at 4 years and 4 months old. We had to move from one state to another to get better services before the RX. We missed out on ECI - Early Childhood Intervention. Ryan is in a special program at a local school. It is a Pre-school Program for Children with Disabilities. He also gets inclusion to Pre-K this year.

Leslie
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  #3  
September 6th, 2012, 02:40 PM
Adriana's Mommy's Avatar I <3 my kids
Join Date: Jul 2007
Location: Inland Northwest
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My son was diagnosed at 26 months old. We took full advantage of everything that is offered. He is in IBI using the EDSM, speech therapy weekly, and in October he'll start OT (Has to be 3 yrs old to get one on one with a OT). We do therapy in the home and he gets therapy at the developmental preschool by his IBI therapist. Also we found out his delayed food allergies and making the diet changes has done wonders for him.

I don't think we missed out on anything. I however went a different route and not the "routine" way to go..
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  #4  
September 21st, 2012, 08:30 PM
Happy Song's Avatar Nicole
Join Date: Jan 2010
Posts: 10,797
Beau was diagnoses as PPD at 23 months. He hasn't missed out on anything per se but Ins co and the gov don't pay for ABA therapy. He is enrolled in early intervention and can got to pre school next year.
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  #5  
September 21st, 2012, 11:47 PM
SandKmommy's Avatar Seamus and Kieran's Mommy
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Location: North Idaho
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Seamus was diagnosed with Gross and Fine motor delays at 2months and 6months old, and his first partical speech delay diagnosis at 15months. We had services for those (and his torticollis & plagiocephally) till 17mo when we moved out of state. The new state we moved to said that he wasn't delayed enough for their services.

We only lived there for 7/8mo and moved back home. It took a VERY long time after that to get much further. He had an Autism Eval done, at 2˝, by the Early Intervention program here and he had 2 soft hits and 1 hard hit on the assessment...he needed either 3 soft or 2hard for further eval.....it really irked us and his pedi about that.
He was put on the Speech therapy wait list at 3˝. It took about 5-6months before he got into his speech therapy at the hospital. He was then diagnosed with an Articulation Disorder w/ Speech Delay. At that time the Speech Therapist noticed his "quirks" and issues that we've had problems with his whole life and asked if he'd been evaled for Aspergers and/or SPD and was a little thrown back about what happened with the EI eval too. She had his Pedi refer him to the Occupational Therapist at the hospital that delt with Sensory issues. When he was 4yrs+2mo he got his Sensory eval and was diagnosed with SPD and Fine Motor Delay. At this point he was too old for any Early Intervention services since the age cut off is 3yrs old. But he got to recieve OT and Speech at the hospital .

We still knew that there was more to the puzzle that is Seamus. The problem was that none of the Psychologists would see him untill he was 6yrs old (or any others that do Autism testing) due to some 'regulation' that they had. Since he missed the inital testing time of 18mo-3yrs he was basically inbetween a rock and a hard spot...Finally at 5yrs+1mo old he got to get the ADOS (and another test) done which showed him having Aspergers/PDD-NOS (he was 1pt over the cut off for Aspergers because he could talk :-?)...But because it took so long and so many "hoops" he didnt' get the full services he needed. His school wouldnt' even help him last year after his Diagnosis. He finally got into IBI therapy for this summer but doesn't have it now due to being in school full time and he doesnt' "qualify" for an IEP because he's not "severe" enough for one and I'm having to push hard for a 504 plan to make sure he gets the help he needs. We had some issues with his school last year (still in the same district, but Kinder's go to one school then split to 5 other schools for 1-5th grades) so I'm trying to avoid them this year and get him the help he needs.

He was also diagnosed with a lazy eye in December 2009 (3˝ yrs old), and has worn glasses/patching/blurring drops since then (yep almsot 3yrs later and they still wont do the surgery to fix it :/), he's severly farsighted -- he's almost as farsighted as I am near sighted which is pretty bad, but his is only in his lazy eye -- and most recently in May 2012 at 5yrs 10mo old he was diagnosed as Red-Green Color blind.

So in all he wasn't diagnosed with Aspergers officailly till November 2011, 5yrs+4mo old!!
Lazy eye+Severe Farsighted 3˝yrs old
Red-Green Color Blind 5yrs 10mo old.
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Last edited by SandKmommy; September 22nd, 2012 at 12:04 AM.
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  #6  
September 23rd, 2012, 07:00 AM
shanirah's Avatar Mommy Strawberry
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Location: Colorado Springs
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Oh that's a bunch of bunk about not getting an IEP. My 11 year old is on an IEP and it states that he gets extra time for testing, a social class and speech and that's about it. His IEP literally takes 30 minutes. I would press them more for an IEP.

My daughter was diagnosed at 2 1/2 officially but was already receiving ECI services by then for her speech delay. The diagnosis was just a formality at that point cause she is so severe. She started school at 3 and got her speech and OT there. Both of my kids had ABA for the past 3 years but we had to quit in February due to my DH getting out of active duty.

My son was diagnosed the week he turned 2. Due to how severe Kat is, we were watching him closely. He was diagnosed as moderate/severe but the minute he started talking it went down to mild and is now Aspergers. He got ECI also for a year and started school at 3. He is a 5th grader now, no sped classes (other then speech and his social skills group) and he makes A's, B's and occasionally a C is reading comprehension. They did their beginning of the year testing and he FINALLY is proficient at reading and he scored the highest for his school on the math test. He also takes Piano lessons, is in a Children's choir at church and brought home a Cello a few weeks ago.
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  #7  
September 23rd, 2012, 07:18 AM
Vicki...'s Avatar Mommy to Caleb & Ethan
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Caleb was diagnosed at around 3.5 almost 4 so we missed out on allot of interventions with him, our only saving grace was putting him in headstart and the teacher that he had was super great with him
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  #8  
September 24th, 2012, 01:24 PM
Fae*Aibell's Avatar Mega Super Mommy
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Jake was diagnosed at 5yrs 8 mths, and Reese was diagnosed at 4yrs 1mth (3 months apart from each other). I don't think they missed out on anything to be honest but if there was other services available, i hadn't and still havn't heard about them.
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  #9  
September 24th, 2012, 06:01 PM
justjaQ's Avatar Platinum Super Mommy
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nicky is just over 2.5 (born in january 2010) and has no official diagnosis yet. his insurance does not cover the $2000-ish testing for autism. the family doctors we go to say that they don't believe he's autistic, but that if he is, he is very high functioning, which is obvious, because though he barely speaks, he is extremely intelligent, understanding and remembering everything. i noticed around 18 months that he wasn't beginning to speak like his two older siblings did, but i waited it out, hoping he was a late bloomer, until he was about 22 months, before getting too worried. he's 33 months now, and has just started in a montessori school, where they are confident he'll be "talking up a storm" by the end of the school year. i hope so! if he gets a diagnosis, i won't be phased. he is my son, and i adore the heck out of him, no matter what might be "wrong" in his mind. he's special to me, and my family, and i adore him as he is. does it make life with him difficult? very much so-- he's super-aggressive, even violent, and never minds. but i couldn't live without him. i'm hoping that spending almost 12 hours a day, 5 days a week, in this wonderful montessori school, will help him. i don't believe it's too late for him, by any means. my dear sweet nicky. he is the 3rd of 4 children. i never thought it could happen to me, but i'm trying to make lemonade out of life's lemons, and we all try to be patient and loving. his older siblings (youngest is only 8 months, and even when nick gets rough with him, baby takes it all in stride) get frustrated-- i caught them posting a sign on a door recently, with a picture of him with devil horns, a line through it, and "NO NICK" written above. i can hardly blame them, with his destructive tendencies, but they all truly love one another, and i feel so blessed to have him.
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  #10  
September 29th, 2012, 10:32 PM
Jintana's Avatar Dragoness
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We got our diagnosis so young (19 months) that noone knew what to do with Tristan. His age was pretty close to unprecedented.
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