Desperate for help please...

Elizabeth - posted on 12/27/2010 ( 29 moms have responded )

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I posted a conversation a few months ago regarding my son who was 8.5 months at the time. I was noticing some quirks that I thought were early signs of autism. He was not eating solids, not consistently responding to his name, staring at his hands often, and not babbling. We had him evaluated by a developmental pediatrician, a child neurologist, he started seeing a 0-3 worker (an OT) and was also evaluated by a speech pathologist who all said their "autism bells were not ringing" and to give him time to grow out of these quirks.

Well, here I am 5 months later and my son (now almost 14 months old) has made progress, he babbles, is now tolerating solids and self-feeding with his hands, beginning to drink from a sippy cup, responds to his name 95% of the time, smiles reciprically, and gives great eye contact. He also seeks me out constantly after a few minutes of playing alone and wants to be picked up. He loves to be held (mainly by me) and gets so excited when we praise him) He is just learning how to wave hi however sometimes he confuses waving hi with clapping imitating clapping and vice versa).

However our concerns are that he does not point, is not showing us objects, barely imitates, does not play the way a 14 month old should be playing, instead he plays repetitively for example, he likes to open and close doors, spin anything that can be spun, plays with strings, likes to pick up objects like a bottle top and drop it over and over again etc. I read that autistic children play like this when they have motor planning difficulties. He also takes objects like a spoon and will wave it back and forth in front of his eyes. He also sometimes looks at things with his head turned to the side and continues to stare at his hands (he will stop when redirected) all signs of undersensitivity to visual sensation which is an autistic trait. He is also beginning to have tantrums because it is obvious he cannot communicate. He has not said one word not even Mama or Dada discriminately, once again a sign that he is having difficulties with motor-planning.

We have an appointment with a developmental pediatrician on Jan 12, at which time we expect that he will be diagnosed. However his birth to three worker does not think he will be because he has made progress over the months and will continue to make progress. I don't understand how he would not be diagnosed with all of the above symptoms. So if a child shows autistic traits but is able to make progress does that mean he is not autistic? Trust me when I say, I am praying that I'm wrong but in order to get him the services he needs he needs a diagnosis. She also thinks there is a good chance he is NOT autistic. Am I the one overreacting hear? or is this another classic case of "lets wait and see." Does my son have to be at a point where he is unresponsive before he qualifies for services?

With that being said, we are looking for what services we can provide IMMEDIATELY for our son even if he does not have a diagnosis. I don't want to wait until he is 4 before he gets diagnosed to get him the help that he needs. We already have 0-3 services, but that is only for a couple hours per week. I took a leave of absence from my job as a school counselor after his 0-3 wrker said his daycare was not a good environment for him because the other toddlers his age who have stronger communication skills were getting all of the attention. With only two daycare workers and 8 children, my son was not getting the 1:1 attention he needed to learn new skills. Now that I am home with him, we can have services in the home or bring him daily somewhere. We are looking to have intense intervention, since everyone talks about the earlier the better. In the meantime we are reading a book called "More than words," that is teaching us ways to teach him how to improve his communication. We are also engaging him in an activity almost constantly with the hope that if we keep him engaged he will not continue to slip further and further into the disease.

I am writing because I was hoping for some suggestions from someone who has been there. What services are out there that might give our little boy his best chance for progress? We will be willing to pay if necessary. Are there provate consultants out there that will do just as good a job as birth to three? Should I watch out for scams? If for some reason the developmental pedi does not officially diagnose him on the 12th and instead just says “red flags”, we still want the intensive treatment IMMEDIATELY.

Thanks in advance for any help.

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Tina - posted on 12/31/2010

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I disagree with Linda Southal. There are well known red flags for Autism at 12 months and everyone is screened in the US for autism at the 18 month well doctor visit. If caught early, interventions can be started earlier with better outcomes. If I waited for my son to be diagnosed, I would have missed out on tons of early intervention. He was 16 months at diagnosis and 18 months when ABA therapy was started. A mother has something no one else has...intuition about their own child. Let each person do what they feel is right for their own child. If that person is concerned, it is better to get a child checked out and either confirm it or put that worry to rest. There is no harm in evaluating a child. I don't think most people are looking for a diagnosis. They are simply looking for their children to be healthy, and if they are not, to get them help as soon as possible.

Noelle - posted on 12/28/2010

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if i were in you position i would simply encourage and help my kiddo along in the area he seems to be challenged in. my DS has aspergers and it is very mild at that, he was diagnosed at 3. before that time we were encouraged to work wiht him at home on his speech and imaginative play etc. at 3 he started in a special preschool and got his therapies there. he is now six and doing very well. a couple things that may be helpful : first Autism comes in a full SPECTRUM of challenges, so each chihld is unique needs unique things and responds in their own way to treatment. along with this I think it is helpful to recognize that while treatment can be helpful to a kiddo on the spectrum, they will probably always have at least some quirky behaviors. I was a lot happier of a mom when I accepted that my little Aspie would probably always see things differently than "typical" children. now that I have accepted that I can help him accept himself and navigate through a world that I am sure seems very strange to him at times. don'tworry too much , you seem like a very aware and helpful mom diagnosis or not you are the best teacher to you kiddo at this time in his life IMO

Taleese - posted on 12/28/2010

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slow down and don't let your concern, worry or fear of your son being autistic engulf you. For one no doctor will diagnos a child with autism under the age of 2. If someone does I would be concerned. All children develop at their own rates. I have twins and even tho both are twins, each has done mile stones at different times. From walking and talking to potty training and riding a bie and losing teeth. I would say to continue playing with your child, working on areas you are concerned about. When he turns 2 and if you still have no verbal communication etc then have him evaluated. In the meantime enjoy him time goes so fast as it is..

Karen - posted on 12/27/2010

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Early childhood intervention can make an incredible difference! Spending the time with him now while his brain is developing, giving him a simple diet of whole, organic foods and vitamins, explore DAN protocol for health, exploring options for the whole child: physical play therapy and exercise, walking, crawling, rolling, through and around obstacles, reading to him, simple puzzles and flashcards, keeping him busy, but in a predictable schedule, less colds and infections, delaying vaccinations until near school age unless disease outbreaks in your community, all these things help a child to grow his or her best. Enjoy him! Love him and keep stimulating him as you are--autism is not the scary lifetime disability it once was. You are on the right track, keep on!

Sheila - posted on 12/27/2010

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Hi Elizabeth,



It is unlikely that you will receive a diagnosis. The youngest I know of, and they're three children that I know personally, received a formal diagnosis at aged 18 months....and these were children at the severe end of the autism spectrum.



So, a child can still be diagnosed with autism even while demonstrating progress. Think of it this way: most of us are driving to City A, showing pretty typical progress. A child with autism might be driving to City AB....progressing on their journey, but to a destination that is unfamiliar. It might even look like they are driving to the right destination, taking a longer time to get there, but sooner or later, they take a right instead of a left. The higher functioning the child, the longer it will look like they are still heading to the same city as the rest of the crowd.



It is difficult to get a diagnosis this early because, unless severe, most doctors will want to make sure that plenty of time has been given to meet those developmental milestones. So, if your child is still within the timeframe given for a milestone (eg: walking...8 months to 18 months) they will still say there is time to wait. My son was at the outer limit for all milestones, but still within the "acceptable" range.



An occupational therapist who specializes with children on the spectrum is, for me, your best resource. What I like(d) about our OT experience was that the OT gave us incredible strategies for home. So, much of the therapy in the office was demonstrating/teaching me what to do to carry out the program at home. We were in therapy a year before formal diagnosis.



Is there a university/college close to you that has an early childhood development program? If so, they might offer programs for parents. I had a colleague who was able to get her son (and herself) into floortime therapy at no cost because it was a "study." She was required to complete response forms, etc...but her son really responded well to this type of play therapy and she learned a lot of new strategies.



You have described many positives...first among them your son is responsive to you. The repetitive behaviours, the spinning...those are red flags. I am wondering how long he will engage in the repetitive activities before redirection? Does your little guy line anything up?



When you say tantrums, how severe? Any self-injurious behaviours?



Good luck to you,



Sheila

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29 Comments

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Julie - posted on 01/10/2011

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i totally understand; we went through this about 7 years ago when our son (2 yrs. old at the time) was diag. w/ severe autism... very similar qualities as to what you have said...In Iowa we have the AEA which sees children that are at risk for disabilities...beg. w/ the child devel. specialist....and speech therapy. See what is available for you; in the mean time I suggest teaching sign lang. (they did that with our son) uy any toys (espec. talking ones) that support him learning words. Contact an autism support group in your area (don't necessarily need the diag. for that) they can be a wealth of support and info. just explain your situation to them. See if your area has a teaching hospital... herre in IA we have the Univ. of IA Center for disabilities and development where they go thoroughly thru the diagnosing process. (Just needed a referral from a doc stating suspicsion of the disorder...good luck let me know

Elizabeth - posted on 01/10/2011

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Thank you everyone for your input, I took my son to a sensory integration clinic and he was approved for 3 days a week of sensory integration therapy in addition to the 2 days a week of birth to three services. He was also approved for a research study for eye-tracking for babies showing early signs of autism at Yale CHild study center where they will give him a 2-day evaluation where they will assess his social and communicative play and make recommendations for future treatment, and he has an evaluation by a develpopmental pediatrician this week. I think I will be getting answers soon. In the meantime he is receiving services for the concerning symptoms. At this point I feel comfortable saying I am doing everything I can to help my son.

Stacey - posted on 01/05/2011

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You could go about it the way people did in the old days before more "refined" Autism diagnosis. They went ala carte with services. But this will cost out of pocket unless you can get some assistance. This is what I did to start when no one wanted to listen to me either. I got a private speech therapist who worked with my son on rudimentary speech. You can see an occupational therapist/sensory integration specialist who will work with the "spinning" and coordination things. They can do an evaluations like the developmental pediatrician to determine a processing disorder, visual and/or auditory. You can also pursue ABA as was suggested above which works with socialization since he will be struggling due to slow language skills.

I know you pain. But you can work through it & you can put the diagnosis out there for later. Email me if you want.

Stacey

Andrea - posted on 01/05/2011

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I have two boys with autism. The youngest was evaluated several times and was not diagnosed officially until he was 5. I know how you feel. Sometimes, for milder cases (as both of my boys are), it can be very difficult for them to diagnose it early. Some kids are just slower to develop, and can grow out of it. And particularly at that age, everything is based on the evaluator's opinion and view point. Thoughts and prayers are with you.

Linda - posted on 12/31/2010

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I don't want to appear insensitive, but what is everyone talking about, this is a baby for goodness sake. Why on earth are you looking at disabilities such as Autism at such an early age? And speech therapy??? now come on! I have 5 children, one who has Downs Syndrome and Severe Autism. Believe me when I tell you that all children progress at different ages. My daughter started talking at an unbelievable age of 7 months, just little words such as tata. My one son never started until he was as nursery school at the age of 4. I don't understand why everyone nowadays seems to be in a rush to label a child with a disability. What do you expect a child of 13 months to be doing, reading? writing? C'mon you lot, be sensible. And how on earth you can say a baby of 8 months could be diagnosed with Autism is ridiculous. Stop looking for things that don't seem right and enjoy your baby and the wonderful, funny and lovable little chappy he is.

Jan - posted on 12/31/2010

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Take him immediately to Behaviour therapist or Psychiatrist they will test him in all areas and give him therapy to fill in the gaps of the skills he is missing. A behaviour therapist will come to your home and work with him one to one... I would do it NOW! I waited too long I am proud of you for being such an advacate!

[deleted account]

I agree with what others are saying in that you will probably not get a diagnosis at his age. However, some of his tantrums probably do stem from his frustration of not being able to communicate with you the way he wants. Learn some simple sign language and work with him on that - we taught our son the basics such as food/hungry, drink/thirsty, more, play, sleep and it helped tremendously. If he is simply slow in developing, the sign language skills will still come in handy. The other thing that I would suggest is looking into a therapy called ABA. This therapy is done at home and will most likely help your little fella progress in areas where he may be lacking. You know your son better than anyone else does, so don't give up. Keep pushing for speech, OT and any other service you can get for him right now. Autistic or not, these services will do him a world of good.

Barbie - posted on 12/30/2010

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Hi,
My daughter was diagnosed with PPD at 14 months....if your child is receiving therapy now.. speak to the case manager and ask for your child to be evaluated by a Phycologist not a Psychiatrist ....and they will be able tell you!
Happy New Year & Good Luck!

Sandy - posted on 12/29/2010

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Elizabeth, you're doing all the right things. Trust your instincts and look for help, no matter what his ultimate diagnosis may be. My son never received a definite diagnosis from a doctor (we went to developmental peds as well, when he was 2 1/2), but he is very definitely on the spectrum. I just want to suggest looking into Relationship Development Intervention (RDI). This is the remediation method we are using, and my son is making wonderful progress.

Barbara - posted on 12/28/2010

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If you will give me your email address, I want to share a story from Dr. Ong and what he did to help his daughter. The story is so amazing that he also put it on youtube.
Barb

Tina - posted on 12/28/2010

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First of all, I'd say that your instincts are your best weapon. I was told by several people that my son was not autistic when I suspected at 12 months....because it didn't fit into their idea of what ASD was. Well, I pushed for various testing and was denied a diagnosis at 15 months by one devel. pedi. I got a second devel. pedi appt and a diagnosis at 16 months. My son was a lot like yours except mine didn't respond to his name. From what you are telling me, I think you have cause for concern and should seek out an evaluation.
When we got a diagnosis, we started ABA therapy (a must), and speech and OT. We later started seeing a DAN! doctor for biomedical help. My son is now 4 and is severely delayed with communication (cannot verbally communicate well at all... few one word utterances.
On the other hand, my youngest was much further along than my oldest, but had no words until 22 months. We had him diagnosed with PDD-NOS at 20 months. He is in ABA therapy and speech as well. He, however, has made wonderful progress! He is still speech delayed, but improving quickly.
Oh, and autistic children DO improve with therapy. So, the idea that someone cannot be autistic because they are improving so well is a load of bunk.

Teresa - posted on 12/28/2010

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My 10 yr old daughter was diagnosed with Aspergers at 4. She was considered a mild case. With lots of good therapy & social work, at age 9 she had progressed so much that she no longer is eligible for special services under our state's guidelines. Hang in there, therapy works. Your son may be on the mild end of the autism spectrum and very treatable.

Sue - posted on 12/28/2010

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I just wanted to tell you to trust your instincts. I know some people think Autism is the new buzz for kids with problems - but my son who has asperger's was said to be retarded (by the school principle) had opposition disordered, with holding disorder, attachment disorder, and several others - Not much was known about autism 30 years ago or asperger's but I knew the diagnoses, and labels did not fit. He was 26 before he was diagnosed. His life has been hell. Make noise. Trust yourself. Read lots of books about developmental disabilities, there are many, and ask the doctor you see on the 12th what he/she specializes in, what do they look for, and don't give up until someone starts talking about providing you with the intervention you clearly desire. When my son was in school he had lots of potty problems - he just focused on so many other things - he didn't use the toilet until he had an accident - this is why this 6 year old who could read 3rd and fourth grade level was shoveled off to special ed. Be the wheel Mom - you are the only one who can stick up for your little guy. I will keep you in my prayers. By the way my son lives on his own, is fully disabled, and although very very smart does not function well around lots of people, and has significant sensory issues - but he does manage quite well balancing $600.00 a month to live on - good luck.

Lisa-Jayne - posted on 12/28/2010

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Elizabeth, you are obviously a caring, dedicated and educated mum. You are the best thing for your son right now. It is my opinion that all children develop at different rates and what you speak of could just be his own pattern of doing and learning things. My first daughter, who is naturally brilliant at school etc, didn't speak until she was almost 4 years old. We had her assessed for everything from intellectual disability to mouth formation problems to hearing problems, with no answers, then all of a sudden she started speaking in full sentences. She just had decided until she had a full mastery of language she wasn't going to use it! Then our second daughter seemed to be following in the same footsteps, so we avoided all the testing etc. It turns out she is intellectually disabled and has Asperger's. Our third daughter was speaking in sentences at 1 year old. All children are different, and I think it's wise to keep your child under the care of their doctor, but worrying won't help anything. I think at this stage your best plan of action would be to a) make sure your paediatrician is aware of your concerns b) work with your child yourself encouraging him in both the areas he's excelling in and the areas you worry about and c) relax and remember that your beautiful boy is your beautiful boy, whether or not he gets and Autism or other diagnosis. He is already making beautiful eye contact and loving you well. I think he is going to have a wonderful life and with a mother like you, how could he not!

Mindy - posted on 12/28/2010

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I disagree, he may be diagnosed as PDD-NOS or having autism even at his age, especially if you go to a University hospital or Children's... the reason is early intervention.
Even if he is not diagnosed, check with your community based board for developmental disabilities and your school district both for therapies and 0-3 services. Also, check into therapies at your local Children's hospital (most won't be covered without a diagnosis). Do all you can. Best of luck.

Michelle - posted on 12/28/2010

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If you have not tested hearing do that. I've known kids the other way around, given an early autism diagnosis but then backtracked after rechecking hearing and finding that he was profoundly deaf. But yes, experts can be wrong as well so follow your gut.

Sandrella - posted on 12/28/2010

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I agree with others - no doctor will give you a diagnosis - my son is now 18 and I still can't get a clear opinion.

My suggestion to you Elizabeth is to take matters into your own hands and do what you can do without the doctors and the schools. Look at diet. Look at the gluten-free, dairy-free information. Your description of things is very similiar to my son - Aspergers. The diet was the very best thing that I did for him and wish I'd started it earlier - like when he was 3. You'd be amazed at the positive changes in your child by simply changing what they eat!

Best wishes for you
Sandie

Jenn - posted on 12/28/2010

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Elizabeth, keep pushing! As an educated, well infolrmed Mom, you know your child and his needs. Remember ASD ( autism SPECTRUM disorder) there are many variants along the spectrum ~ so just because there is progression in some areas doesn't mean there aren't delays in others. Although my son is now 8yo and was just "officially" diagnosed within the past year with Aspergers, it was readily apparent well 18 months that he was extremely frustrated with not being able to communicate verbally. I began to teach him simple signs and he was like a sponge he was so excited to be able to truly express what he needed/wanted. The earlier any intervention the better ~ don't stop believing in yourself ~ and get outside (private) evaluations if necessary. Never stop pushing, just keep advocating for your little one.

Tammie - posted on 12/27/2010

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My son's doctor put in a consult for a speech therapist and a developmental specialist. The latter diagnosed him with Autism, told me to get a second and third opinion, and put in a consultation for a psychologist. I also contacted the local county school system to enroll my son in the Head Start or More@4 program. They have a more structed pre-k program to get him ready for school because daycare is just that. We have an appt with his Psychologist to conduct an IQ test and she also recommended we seek out an OT. All three entities seem to have their own method for detecting Autism which is great. I don't think you are overreacting. Just make sure you explore all of your options.

[deleted account]

It's not always the best decision to label a child that young, especially if he is progressing. He may be behind in some areas, but there is still nothing that screams autism, especially for as young as he is. You describe the fits as beingfrustration-motivated and revolving around the attention you're giving him. When an autistic child has meltdowns, it's different. It is typical for a frustrated child to act out when he feels like the communication is lost. He's trying to communicate and many children with autism don't do that at all at one year old.



It's good that you want to help your child, but narrowing your focus so much might not be the way to go. Many, if not most pediatricians will not diagnose for at least another year, if not longer. Your son is receiving free services. If you are really that worried, you can pay for him to get therapy even if he's not diagnosed right now.

Connie - posted on 12/27/2010

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My early childhood(your 0-3) also did not think my son had autism. I really wanted to believe her but as the mom, you have more insight. Get ahold of someone who will test him, check at hospital, and get the diagnosis. I don't think you can get a lot of outside help without that. When you get it, then check with your school district. I was lucky enough to have a school with a program for special needs right in our district. There's help out there, you just have to get your child tested. We started out with a hearing test, then went from there. You're very brave for admitting there may be a problem, that's really difficult, and even though you're prepared, it's still a blow. Good luck.

Karen - posted on 12/27/2010

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I know how worried and concerned you are, I don't know where you live but have you contacted your school district, he may or may not be autistic but here in Michigan special ed services are provided for all children not just school aged if they qualify I believe with his speech delays he could receive those services and at least the school we worked with they are were great about getting my son all the services he needed. also for providers in your area that works with kids with sensory issues even if he is not Autistic you could have him evaluated for sensory issues and start working with those alot of sensory problems cause alot of the other thing you are seeing from him. Easter seals in some areas have good OTs and Speech therapists, search online. we have alot of well respected places that provide Occupational therapy (they do sensory) and Speech therapy. I would get him services for his delays. I learned a long time ago not to worry about the diagnosis but worry about what skills my son is lacking that he needs help with. feel free to email me on here and I'll send you my home email and I'll see what information and services I can find in your area.

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