My 2 year old is different, autsim?

Veronica - posted on 05/19/2011 ( 12 moms have responded )

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My son Landon is 29 months old, he's had medical problems since he was first born. Chronic ear infections, Acid reflux, had 2 surgeries already and more.... Landon hit all of his milestones early when he was young and seemed like he was on track for everything, then around his second birthday I noticed that he wasn't talking as much as he once did. I spoke to his pediatrician and he suggested we wait a little while to just see if it was a phase he was going through. A few months later I noticed he was talking even less than before. I started getting really concerned because he was saying 100+ words and now is down to 15 max he uses regularly. In addition to losing some vocab Landon has some exceptional behavior. He is either a perfect angel, or he makes us want to pull all of our hair out crying non stop hitting throwing things etc. Some of his behaviors that are pointing us towards autism are that he is very specific about his toys. He lines things up in patterns or by size. Everything has a specific spot. he is VERY picky about what he will and will not eat. Actual food consisting of maybe 4 things. We find him pacing in our living room where he seems to get stuck and can't control bouncing back and forth. He seems to be unable to hear but has had his hearing tested and passed. He just doesn't respond to his name! He does not have problems bonding with people but has no intrest in playing with other children at all. There are some other things too but not going to go into every detail.

I have never known anyone with autism and don't know a whole lot about it, and since we are still at the start of our path to figure out what is going on I was hoping someone might be able to tell me if it sounds like these things point us in a different direction. Or if it does sound like autism what does that mean? Will he be able to participate in activities in school? Will he be able to do well in school?

I'm at a loss for words, any information would be much appreciated and helpful!!

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Sheila - posted on 05/21/2011

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Hi Veronica,

FIRST, any time a child loses previously attained skills (regression) the physician needs to take action. A referral to a developmental pediatrician or a neurologist is very important. First, you need to rule out that there could be physiological reasons for the loss of language...then, if that checks out, you need the developmental pediatrician to help out.

You have described many red flags that one looks for when describing classic autism. I don't think you need to look at descriptors like mild or severe because anything that goes untreated can become "severe.". Even without a diagnosis, there are steps you can take to help your son break the cycle of isolation and frustration.

Your son sounds very much like my son at age two. He is seven now, and if I could have had a crystal ball when he was little, it would have been so much easier. I thought I would share the strategies our OT put into place to help my son navigate out of the isolation that autism was causing.

When my son first started seeing his OT, he was put on what is referred to as a sensory diet. Like a lot of children on the spectrum, he had/has a lot of sensory issues.

So, in order to help process sensory information so that it wasn't painful or overwhelming to him, we began a sensory diet.

1. I bought an air mattress. Since he also had gross motor/balance issues, the air mattress helped him create a sense of balance (he would just walk on it). He would also throw himself into it to get that sense of pressure he craved.

2. We began a brushing/deep pressure regiment. So, about every 90 minutes, we did joint compressions and used a surgical brush to complete brushing therapy (OT demonstrated the proper technique)

3. My son would bang his head against my hip, or when upset, the wall. We began regular head compressions (again, OT showed how)

4. We used a weighted lizard to provide comfort.

5. We used what are commonly referred to as hot dog squishes (he would lie between two pillows, and I would press down)

6. His mouth is hyposensitive (doesn't properly feel it) so we began using an electric toothbrush to stimulate his mouth/jaw...

7. We began using headphones on a regular basis to cut out noise. This made going out much easier as he was easily overwhelmed by background noises/music.

8. We brought a blanket everywhere because store lights, displays were too overwhelming, so he would cover up under the blanket and he would slowly emerge as he acclimated to the store environment.

9. OT did all these exercises using a platform swing (swinging calmed him tremendously)

10. SEt up a tiny tent so that he had a place to "escape."

11. We had a Yoga ball that he would bounce on (so he sat, feet on floor...I would hold him in place with my hands on his waist, or on the top of his legs and he would bounce) As well, he would lay on the ball, and I would roll him back and forth.

12. We had his high chair in use until he was 4 plus...because my son craved deep pressure, the chair was a snug fit and that provided comfort. Also, there was a place for him rest his feet...again, very important because he just always needed to be "grounded."

13. She also started to help him build up his tolerances. He couldn't stand the feelings of creams, or "light" things touching him....so, she just kept introducing dabs of cream through fun activities...same with light things..like touching a feather to his arm. And then, we would do it at home.

14. Ikea had an egg shaped chair that you could close up and spin...loved it ...my little guy will go in a swing for ages because it calms him (at a local park, they have a chair for special needs children...it almost looks like a seat out of a car...again, LOVES it!!)

So, the OT diet is actually all about sensory processing....my little guy was on sensory overload most of the time. We needed to help him make sense of the world around him because (for example) the very act of getting his hair cut was enough to send him into a complete frenzy. When he was able to verbalize it, he said getting his hair cut made him feel like spiders (the hair that fell onto his skin) were crawling all over him....

For communication:
-a visual schedule (pictures of what we would be doing..who we would see, where we would go)
-a first/then style of communication. First we get your socks/then we get your shoes. It helps you to not overwhelm your child with information...so you become clear in your direction.
-hand over hand activities (if being non responsive)
-when saying name, physically make contact. that way, you are communicating with verbal and physical prompts.

My son is presently in grade one. He works with an educational assistant for behavioural support. His academic program is not modified and he is achieving A's and B's (reads chapter books, takes music lessons). He needs support with self-regulation (to avoid/manage what are often referred to as meltdowns). So privately, we also continue to see his OT and he attends social skills classes.

I think the best thing that ever happened to me as a mom of a child with autism, was knowing other moms of children with autism...but the kids were older. Those older kids gave me hope like you wouldn't believe...they were my shining lights during some dark days.

A good OT who understands children and ASD and sensory processing is beyond priceless.

Read the Out of Synch child. It is a very parent friendly read, and helps you to understand a child who processes information differently.

I know my post is long, and I hope I haven't been too overwhelming.

Good luck,
Sheila

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Tiffany - posted on 08/04/2011

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Wow, I felt like I was reading about my son for a minute. My son, now who is 2, was born purple and almost didn't make it. He had on going heath issues and was colicky the first 3 months. Shortly after his birth we did some testing and found out that he had acid reflux and a swallowing problem where we had to thicken everything. As he grew to be about 10 months old, he was still not sitting, playing or even rolling over. Right before a year old, he started sitting up, playing more and even crawling. He is VERY pigeon toed and bow legged so they didn't think he would be able to walk until about 18 months but 15 months came along and showed us all that he was a fighter. After about a year old and on going physical therapy, we took him off his acid reflux medicine and was hoping that things would keep getting better. Well, at 1 1/2, he had to go get tubes put in his ears, adenoids and tonsils removed. Seemed like it would never end but tried everything I good to get through. After the procedure, we no longer had to thicken food because he stopped aspirating. I felt like my life was so much easier. Time went by and he still was in the birth to three program to get the extra help he needs. He was seeming to progress and be just where he should be. At about 2 years old things were not going any further with his communication and he was still seeming to eat like he was at about a 15 month old level. About 28 months old, I noticed some odd behaviors in him, head tilting, walking back and forth, eye blinking, spinning in circles and of course his on going jumping that he has done since he could walk. He could only say about 5 words on a regular basis, but seemed to know every animal, color and recognize the words of his favorite shows. To myself, I didn't want to think there was anything wrong with him because he was so smart, yet so behind in some things. I started thinking to myself, is my son possibly autistic? Nothing seemed to match up because he did make eye contact and snuggled. I started looking more into it and realized that you can still be autistic, there are just different spectrum's. I decided to call his birth to three instructor and she referred him him to the Mary Bridge autistic specialist, who I meet with in September. I went to meet his new pediatrician, that specializes in kids with a delay and he watched him for quite a while and said "your kids a genius." I didn't know what to think and didn't quite understand. He then started telling me he thinks my child has asperger's. I looked into that and finally found the answer to why he has been like he has. Yesterday, Kyler, my son, and myself met with the birth to three coordinator for 3 hours and his birth to three teacher to update his charts. They were in amaze. Anything above a 52 was a level of concern and he scored a 225. He was at the bottom of every test. He can't understand pointing, his name, or even, "will you go put that car on the table?" Yet he can look at the number 7 and say "eight" because it's the next number, color coordinates everything, and even reads the names of his shows. They were doing testing on him that kids going into grade school can't even do. Extra help is something that is always nice. I didn't want to believe my son was autistic but am now starting to believe it. It will be alright. Their are many kids that grow out of it. Meet with your doctor and see if your doctor will refer you to a specialist. It sounds like things Kyler is doing. There are different autism spectrum's. Hang in there, your son might be different to some other kids but I'm sure he is perfect to you, and that is what matters the most. It takes time and patience. I have read a lot of stories and it helps a lot with being able to understand and even know that there are so many kids that are not "a typical kid" but they get through life either way. Good luck to you and I hope you find the help that you need.

Kristine - posted on 05/24/2011

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Sounds like it. My son is 5 now and was officially diagnosed with autism by a licensed clinical psychologist. He met with us---asked lots of questions about our son, Jack, had us complete questionnaires and checklists, then he met with Jack to assess him (administered some tests that involve toys and playing). He met with us again, explained his findings and sent us a report with results and suggestions on how to help Jack. Ask your pediatrician to recommend a licensed clinical psychologist to evaluate your son. It can't hurt and he'll only suggest things to help!

Good luck!
Kristine (Chicago, IL)

Louise - posted on 05/23/2011

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When my brother was in Elementary school the teachers helped my mom figure out what was wrong with my little brother. When he was very little he loved hugs and kisses. When he got in school he didn't like interacting with others. The teachers told my mom to take him to Kennedy Creger (SP) and have him tested. Come to find out he was autistic. He is a high functioning autistic. He has his quirks though. He has his personal space and you can't intrude on it unless you have permission. He has amazing book smarts. He was drawing maps when he was 6. They were very detailed. He will be 24 this year and is attending community college. He has his AA in IT and is now going for an AA in something else. He still has boundary issues. However, if we ask for a hug, we can now have one! There are so many different types of autism. Until you have talked to a specialist it's hard saying. Good luck to you.

Diane - posted on 05/23/2011

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Take the ATEC - ATEC (Autism Treatment Evaluation Checklist), developed by a panel of doctors to help parents to get an idea of where their child stands developmentally - http://www.autism.com/ari/atec/atec_form... ; General info: http://www.autism.com/ari/atec/atec-onli... (We used it to gauge where our son was developmentally. Helped us get a better idea of where he was compared to typical development.) BTW, his first ATEC score was a 96 (zero is neuro-typical).

Results can also give you some talking points with the specialist when you go for the evaluation.

diane in TN

Cherrise - posted on 05/23/2011

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I just went through the same thing with my 3 year old. The pediatrician thought it was because his tonsils and adenoids were Very large, that it was causing a speech delay. He had the surgery. His sleep Apnea is gone, but still not much speech. I contacted a group called First Steps. Thats here in Indiana, through the township. They gave his an extensive development exam and found that he is in fact on the ASD scale. The pediatrician is NOT the one to diagnose this unless your child has health issues. They still need to be assessed and scored. My son has an IEP now, and qualifies for the kind of help he needs.
Hope this info helps

Erin - posted on 05/22/2011

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Definitely follow your instincts and get him evaluated. You are smart to be on top of it. It might be nothing, but if it is ASD, the earlier you know, the better. I knew, on some level, about my son early, but kept excusing the issues. I helped him on my own, but he would have been better off if he'd been "diagnosed" earlier than 9. He does very well now, even is on the honor roll at middle school.
Good luck!
Erin
deploymentdiatribes.wordpress.com

Mary - posted on 05/22/2011

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Veronica, reach out to Easter Seals, Childlink and other organizations. You may be able to get testing done through your county as well and get your child in a program before he is school age. Good Luck, keep doing the research it helps. My daughter has been getting services since she was 1 years old, however she wasn't diagnosed with autism until 5. They kept labelizing her as developmentally delayed

Becky - posted on 05/22/2011

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I see lots of good advice. Believe it or not, finding this out at a young age is good, much better than having your son go for years and then find out he has a form of autism. My oldest son is so intelligent that everyone just thought he was a nerd........but he is a nerd with Asperger's. So there has been a huge adjustment to help him cope with adult life, college, etc. Like one person said, it is a spectrum and your child is not at the barely functional part, but at a much higher functioning part.

Corena - posted on 05/21/2011

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I have to agree with Brenda, an evaluation is in order. If yoru doctor wont listen, get another doctor. My son is 16, was exactly the same as you are describing and has autism. Children with autism have varying stregnths and can be successfull and fulfilled in many ways as they grow. Temple Grandin (you can get the movie on amazon, as well as several of her books) is a perfect example of how successful and functioning a person with autism can be. My son for example is excellent with woodworking and makes handturned wood pens and sells them on the internet. He enjoys his work and takes great pleasure in it, in many ways that other typically developing kids his age would be interested in skateboarding, or computer games, his interest is woodworking.
I was devistated when we got my son's diagnosis, eventhough I knew in my heart for a long time. Watching the Temple Granding documentary was tremendously inspirational and heartening. It gave practical ways of helping my child be comfortable in his own skin. I recommend this to EVERYONE! You can also get info at autism.org

Veronica - posted on 05/19/2011

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We have started some evaluations. he had a hearing and speech eval done. Passed hearing, failed speech. The refered us to a physical therapist [for toe walking] Speech therapist , nutritionist and a neuro-developmental ped. for screening but the soonest appointment to even begin is the end of august which is a long wait [for me] We're getting involved with a program called Help Me Grow. Hopefully they'll be able to speed some of the processes up for us. But for now my husband and I are on our own and trying to figure as much out as we can now to move thinsg along. From what I understand the sooner we get started and start figuring out treatment and therapies the better off we will be.

Katherine - posted on 05/19/2011

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I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)

(A) qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )
(B) qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play

(III) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder

Brenda - posted on 05/19/2011

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It sounds likely, but you need to get a full evaluation. If you start therapy early, he will have a better chance of doing well. Remember it is a spectrum, and kids fall at different points all along it. He has some pretty classic symptoms, but it is best to work with a developmental pediatrician or developmental mental health professional.

There are all kinds of options. Do a search on Temple Grandin (my favorite advocate since I learned about her). She is amazing woman with autism that is a speaker and holds her doctorate degree.

autismspeaks.org is a great place to get information.

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