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Austism?  - No answers right now...

Apr 26, 2011 - 12 comments







no answers

Okay, so this is my first ever journal entry and I always have a hard time putting my thoughts down on to paper (or computer, lol) because my mind usually moves much faster than my fingers but here it goes.

Basically, our second daughter, Lexi, who just turned 18 months has some developmental delays.  We've already been in touch with the Early Intervention program in NJ, she's had her evaluations (except Physical Therapy which is today) and she's been accepted into the program.  We still have a few more meetings to go before any of her therapies start.  At this point it doesn't look like any therapy will start until then end of May atleast.

In the meantime, Lexi had her 18 month checkup at the pediatrician yesterday.  We gave them a copy of her EI report, discussed what's been going on and told him we need names and numbers for a Pediatric Neurologist and a Pediatric Opthalmologist.  

I guess what's hitting me so hard right now is that he brought up the subject of Autism.  And logically I knew this would come into play at some point given her delays, etc. but for some reason actually hearing its a possibility just kind of hit me like a punch to the gut.

Right now I am left with more questions than answers and am just very anxious for her upcoming appointments with the specialists and therapies.  I'm pulled together at times and feel like I am falling apart at times too.

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535822 tn?1443980380
by margypops, Apr 26, 2011
Aww I am sorry I can imagine how concerned you are , of course you are anxious , all I can say is focus on the fact that you will know more  by the end of May and yes that will seem like an eternity, did the doctor think it was Autism or was he just throwing out as a possible ? I would also have a ton of questions to fire at them when those appts come up. I am hoping for the best for you , and your little one ...marg

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by jb41799, Apr 26, 2011
Thanks Marg.  He really didn't have any answers yet.  The doc did her MCHAT screening which indicates a possibility of autism and their suggested next course of action would be Early Intervention.  Since we already started Early Intervention, there was no need to suggest that.  He said he's not saying she is or isn't autistic but also told us not to be surprised if at some point we aren't told that she is autistic.

It's actually Early Intervention that has her seeing the Neurologist and Opthalmologist.  I am thankful that I was able to schedule all of her appointments in May.  Upon my initial calls, I was being told appointments in July, August and September!

Thank you for the support.  I really feel like I need a lot of that right now.  We've got a few other things going on at the same time and I'm just trying to figure out how to get it all done.  

Avatar universal
by theirmum, Apr 26, 2011
Great advise there from Marg.  The learning curve will be big but necessary one.  Great thing is that the intervention is early! You are going to be her greatest and constant advocate - when others (incl. docs, therapists, teachers etc.) get it wrong.  It may be a general delay in a number of areas / developmental dyspraxia.  It may be asynchronous development - possibly with very superior intelligence.  (Get an IQ test when she is about 4) Be encouraged that she has the best chance with a parent courageous enough to not bury her head in the sand - even when it seems too much. Allow yourself to adjust and grieve but have hope. I have two boys who have responded so well. All the very best.  xx

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by margypops, Apr 26, 2011
awww dont you hate that , I have often found that is the way life goes its either all or nothing, I prefer the nothing....It so many times does go in three's ..I dont know what Berlin is like for Doc's appts but my daughter in UK has to wait months for anything, so its very good you have all yours in May .Stay positive I do well with that when stuff comes up to bite me...

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by specialmom, Apr 26, 2011
Hi!  I wanted to reach out a little here and offer you support.  My oldest son has a developmental delay and I think the evaluation process and coming to terms with things was the hardest time for me.  The 'not knowing' what the future holds for our child is really hard.  I went through a period of depression and anxiety at that time where I laid in bed at night unable to sleep and crying.  Those feelings are natural.  I also had a 'manic' type of energy to try and fix it!  My mind whirreld around all the time and every time I looked at my beautiful little boy, I just felt a pit in my stomach.  I didn't know how this could have happened or what we were going to do.

In one night it changed for me.  I was doing the usual middle of the night sob session--------  and then my mind just cleared.  It hit me------------  no diagnosis made me feel any different about my child.  I loved him with my whole heart just as he was ------- diagnosis and all.  He'd be okay because I'd do my best to provide what he needs.  I'd help him learn to cope and do whatever it took for him to have the best life possible.  

And I can tell you will do the exact same for your daughter.  You've done the absolute best thing to begin early intervention and to start working on whatever challenges she faces.  And I'm here to tell you that they do AMAZING things with our kids these days.  They can really make a difference and I expect that they will help your daughter tremendously!  It will be okay.

Autism is a scary word but remember that it is on a spectrum.  Some with very high functioning autism you may not eve know that they have it.  So if it turns out that your daughter is given the diagnosis of autism, remember that she will fall on the spectrum at a certain place and this may not mean that she won't have a full, high quality life.  And with the research that they've done on autism--------  it is really amazing how they can move kids along and even get them on target eventually.  They may cope and handle things differently, but they have a happy and functioning life!

My own son has sensory integration disorder.  At 3, things were not good.  I was so worried all the time.  He is now 7 years old and in the first grade.  My son has no IEP at school, does well in his academics, has friends, teachers like him and he is happy.  Not every day is easy--------  but overall, things are just fine.  Our family incorporated what he needed for his sensory disorder into our lives and it is quite natural to play sensory games for his nervous system or work on an aspect of his delay.  It is our normal.  Whatever your family does to help your daughter along will be your normal too.  But again, my son is doing quite well after early intervention.  He still does occupational therapy and we work on nervous system activities ---------- but he is doing great.  This is to give you reassurance that a diagnosis is just meant to give you a direction to help your child along.

I wish you lots of luck and please contact me any time.  Peace.

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by jenkaye21, Apr 26, 2011
Best wishes to you and your little one.  You don't mention what kind of delays your child has, but I just wanted to reassure you "normal" ranges for walking and talking can be vastly wider than doctors let on.  My middle son didn't talk until he was fully 2.5 years old.  By not talking, I mean literally 6-8 words ONLY.  His doctor was concerned, I was concerned, and of course autism was forefront in my mind.  Once he started talking, it was like a dam broke; he picked up new words daily and never looked back.  He is now a perfectly normal and quite intelligent 5 y/o, MORE than ready to start school.
My youngest son didn't crawl until nearly a year, and didn't walk until 15-16 months.  Again, doctors were "concerned", but he is perfectly fine.  
Please keep in mind that some perfectly healthy children fall outside the range of "normal".  I am glad you were able to get early interventions and find out what, if anythin, is going on.

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by Mom2four85, Apr 26, 2011
I know it's scary but if she is in the ASD (Autism Spectrum Disorder) category, the best thing you can do is go forward with EI and get as much and therapy for not only her but your family you can.  Our youngest son was dx with Autism (mid level) at around age 2 after extensive testing from 17mths on.

We went through 15-20 therapies weekly for years and we were determined to do whatever it took as a family to learn his strengths & weaknesses and help him.  My husband has a BA in history and I always wanted to be a teacher, so it was kind of natural for us just to pick up after therapists left and keep going what they were doing.

I can't tell you the difference therapy made, he went from 3 words to a whole realm of vocabulary that floors us.  He reads something once and he remembers it and has an affinity for dates, times, details that we and his therapists miss.  He's 10 1/2 now and highly intelligent but try and engage him in a conversation and then you know what's wrong with him.  He has a great new speech therapist who's working on social interaction; because even with 2 older siblings (13 & 15 years older) and a younger one,  his weakness is social, as is with many Autistic children.

I have a friend whose niece gets therapy through the Shriner's club which is wonderful; they do family intakes and then learn what the child needs and really helps the family she doesn't have a dx really of anything other than developmental delay; but it's still such a great option to have.

Avatar universal
by goodluck011, Apr 26, 2011
Study Autism. I was not researching this topic, but ironically, I am watching this show, "the secret millionaire", and the millionaire couple is meeting with a non profit org that supports and help families of children with autism. I was searching for something totally different, but ran into your story while watching this show right now, and I feel moved to tell you to research autism. And no matter the results, stay positive, focused on being a great mother and learning/loving your child. Good luck and I am wishing the best for you and yours.

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by mum2beagain, Apr 26, 2011
Lots of great and well thought out comments from others.
I also wanted to share our situation;
My son was nearly 4 when he went for his autism evaluation, we had had all sorts of things suggested; global developmental delay, sensory integration disorder, been told it was just because of his hydrocephalus or his cerebral palsy. He had been in therapy since he was 18 months old but no where near enough. By the time we went for the autism evaluation I actually hoped he would be diagnosed for the plain and simple reason that that diagnosis would open the door to much more therapy than he had been getting and so desperately needed.
As we walked across the parking lot to the center my husband said to me; " It doesn't matter what happens today we still go home with our wonderful little boy and he is who he is". I think I loved my husband more in that moment than I had ever done.
Our son was diagnosed with Autism that day and 2 weeks later he started with intervention 3 or 4 times a week for 2 or 3 hours at a time and what a difference it has made. Yes our boy is still autistic but he functions fairly well and he is happy and enjoys life, and so do we. Our son is an intelligent child academically; he has an amazing vocab, reading, writing and music skills but couldn't give two hoots about being "social" so that is something we have to work with him on and he attends after school care with a one on one aid to help him learn those skills and has speech and occupational therapy weekly to help him too.
It is perfectly normal to grieve for what you expected you would get when you had your child, I did too but the way I see it now is my eyes were opened by my son and the life he has. I see things differently now, I have experienced things and met people who I would have otherwise not have done, I have a whole new appreciation for life. I have an amazing son; there are days he takes my breath away.
Be your child's advocate and get her all the help you can.
Best wishes.

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by Lost_Wanderer, Apr 27, 2011
Wow-you sound like you are having a really hard time! I just wanted to wish you the best blessings for you and your family! While you're waiting, just be positive and keep up good spirits. Did the doctor say it was definitely Autism? My mom says that she thought I was autistic when I was younger; I barely talked. In fact I never did. Until when i was older and now I am practically a chatterbox. :) I wish you the best of luck!!

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by jb41799, Apr 27, 2011
Thank you all so much for the wonderful comments, stories, words of encouragement and advice.  So much of what you've said has really hit home for me but has also really helped me as well.  No matter what, nothing changes how much I love both my girls and from day 1, I've appreciated and loved them for who they are.  They've already taught me so much.  I've learned how to relax...go with the flow.  They've taught me how to laugh at myself and not be so serious all the time.  There is nothing I enjoy more than spending time playing with my girls.

To fill you in a bit more...there has been no definite diagnosis of Autism at this point but the signs are there.  At current, Lexi does not point (although she has started a little), she also was saying about 6 to 10 words at 15 months and has since had a regression.  She uses maybe 4 words now but not often unless it's baby or nite nite.  She's also being pulling out her hair when frustrated or tired.  Lexi does make eye contact but does not keep eye contact for long.  Also, despite walking since 12 months, she still walks as if she is a new walker.  The first two therapists that came out to do her evaluation noted that she seems to have an extreme sensitivity to light and sound.  Her left eye also does not seem to track the same as her right.

Lexi had her evaluation with the Physical Therapist last night (for gross motor skills) and she qualifies for those services as well.  So, she will be receiving, speech, occupational and physical therapy.  I really couldn't be more thrilled.  The more therapy the better.  Her evaluation with the PT was very encouraging.  She was the first to really immerse herself in Lexi's world, blend into the background.  The more comfortable Lexi became with her, the more the PT was able to see her and what she truly is capable of and where she needs work.

The PT gave us some great exercises to start with while we are waiting for therapy to start.  They are all things that we can incorporate in every day routines and play without her really noticing.  We had already started while she was there and noticed a difference already.  The PT believes that within a month, we should see a difference and she also believes that she will not need PT for very long.

No matter what, she's my daughter and I love her and will do whatever it takes to provide her with the best life possible.  I'll always find joy in playing with her and watching her grow.  I cannot express to you all how much your support means and how much it has already helped!  I've already begun to pull myself out of this funk so I can take care of what needs to be done.  Thank you all so much and I will keep you posted!

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by specialmom, Apr 27, 2011
What a great attitude you have!  You are a great mom and I think you are going to be able to help Lexi so much!

You mention a couple of things that are common with sensory integration disorder including the sensitivity to noise and light.  Motor control and eyes tracking differently is also part of the sensory evaluation.  Occupational therapists treat for that--------  and they are on your lists of specialists helping your daughter so that is great.  (sensory can be a disorder (or delay) all by itself or it can be comorbid with other things.  It is very common in autism, adhd, etc.).  Knowing that she may have some sensory issues helps because when she has behavior you can't explain . . . that will often be the answer.  Then  you work on that sensory issue and things can get remarkably better.  (My son is proof!!)  

Again, contact me any time you need a shoulder to lean on, an extra pair of ears, or any ideas to help.  Peace.

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