We have a diagnosis

[Bugsmom73]

It is Autism. Mild to moderate in severity, primarily due to his speech issues for the moderate. He is very social, which I find confusing in all of this. He does not always look at people he does not know and the doctor did state that some of it is definitely due to his speech delay.

He tested above age for know his colors, letters numbers etc. I am still coming to terms with the diagnosis.

We also get to go to the neurologist to rule out seizures and to get genentic testing done to rule out any genetic disorder.

Any suggestions on how to get insurance to help pay for some of his therapies? We are also going to start ABA therapy, try to get him into the autism classroom in our district and increase his speech therapy in school and hopefully with our speech therapist.

 

[tacomaranch]

Dearest Bugsmom,

I am happy you finally have an answer and yet sad because we are in our first year of the diagnosis and I have so many emotional issues that go along with DS diagnosis.

You are doing great because you have a plan! ABA is wonderful! It is the only program that is data driven and can scientifically prove improvement or not.

I have a home based ABA program for our DS and he has learned to speak almost to his target age since we started in June! I am a strong advocate of ABA. It is expensive, time consuming, labor intensive and worth it all.

I have not filed for anything thru our BCBS but DS is on the State Waiver in Wyoming. They don't pay for any therapies at all. It is a terrible program and I am working to change it. We were the first family to ever get a penny for an intensive early intervention program but I ended a mess by the time we got done fighting for our DS.

How old is your son? What made you think there was something wrong? What services are available to you?

Please feel free to PM anytime you want to to discuss the journey you are taking. Each child is very different, hence it is called a spectrum. Our autism is different from yours but in the end it is that our children do have autism.

It is hard, I cried a river and still do. I had dreams and hopes for my DS and they are gone now. It is almost as if I lost the little boy I had and now I have a different child. I grieve for the loss and I want that boy back. But life is cruel and God has a bad sense of humor. I have a wonderful, happy, boy that has autism.

Please again, feel free to pm me anytime.

Big hugs to you April

 

[isla bonita]

Bugsmom73

It is a lot to rap your head around. It is to new. Take a deep breath. I am sure you have been holding it for so long being uncertain and unknowing. You have come to a great place with a lot of caring individuals who have also been where you also are.

I know we are strangers but having been in a similar place as yourself a while back 16 years to be exact I would have loved to have this many people to bounce ideas off of. You are not alone and that is such a relief I know it may not seem it right now but having people who understand or can just be there and know ans share the frustration.

Keep strong Deb

 

[susieq76]

ABA is wonderful! It is the only program that is data driven and can scientifically prove improvement or not.

I agree 100% You are doing the best possible thing. Just to give you a little hope... One of my sons (started aba at 20 months) is now testing not even near the spectrum He did so well and it took us 3 months of nothing but the basic programs (ie Look at Me) and then he just flew. He is in a 1/2 day spec ed & 1/2 day typical program now (2.9 months). His teacher keeps questioning his diagnosis (which is silly if you had seen him spinning in the light striations. walking backwards & flapping). We are just about 100% sure he will be in a typical K in 2 years.

My older son still scores on the spectrum but I understand that he began later (around 3) so it just goes a little slower. He's still doing great though.

Good Luck.

 

[Bugsmom73]

Thank you all. My DS just turned 3 this week. We will be starting ABA hopefully by the beginning of November. I have to make the calls starting as soon as we get the paperwork. Any more suggestions would be helpful.

 

[susieq76]

Make sure you watch the team either in person or via video. At first ABA will look so robotic and he may not like all this intervention (ie my DS threw the table at my team leader week one). Make sure you pay attention & follow up. You will find yourself saying "Good Looking!" a lot- other Moms w/ ASD kids will recognize you as one of their own.

Early on ABA is very hard, as a Mom. But the results are astounding so stay tough.

 

[minkydog]

As hard as it is to hear the diagnosis, in some ways I'm sure it is a relief. Our kids are such a puzzle. I'm glad you have been aggressive about getting him tested--now he can get the right treatment. (I have a nephew who is autistic. His parents have been in denial for 5yrs His mother is finally coming around, but his father still says nothing is wrong with the boy. So Everett has missed years of therapy which surely could have helped him.)

My youngest son (11)is autistic and low-functioning. He is very loving, gives hugs & kisses, very pleasant to be with, and undemanding. Not the Rain Man type at all. Autism comes in many flavors

 

[MightyMom]

It is Autism. Mild to moderate in severity, primarily due to his speech issues for the moderate. He is very social, which I find confusing in all of this. He does not always look at people he does not know and the doctor did state that some of it is definitely due to his speech delay.

He tested above age for know his colors, letters numbers etc. I am still coming to terms with the diagnosis.

We also get to go to the neurologist to rule out seizures and to get genentic testing done to rule out any genetic disorder.

Any suggestions on how to get insurance to help pay for some of his therapies? We are also going to start ABA therapy, try to get him into the autism classroom in our district and increase his speech therapy in school and hopefully with our speech therapist.

My DS will be three next month. He's been in Speech Therapy and Occupational Therapy for well over a year. His OT recommended testing him for autism.

I flip flop back and forth. I don't want him labeled unless they are 100% sure. He has some quarky behaviors...... but I think they are just quarky behaviors and nothing more.

I'm not afraid of a label...... My DS7 has cerebral palsy and I've never had issue with a new diagnosis given to him.

Please... tell me what exactly made you suspect autism..... and what his behaviors are that made the diagnosis.

Thanks

 

[Bugsmom73]

Lack of eye contact was and is still key

Severe speech delay although it is improving.

He doesn't always social smile, but I have seen him do it with us at home.

He has some mild persistive behaviors but is not fixated on any one thing.

In the past, he did not point or bring things to us. He will now with some regularity. Most of his issues are tied to his speech and language delay. He is a relatively flexible kid who enjoys making some messes and is not terribly sensory avoidant. He loves hugs and kisses.

It was mainly or ST, OT and DT who pushed us for further testing. He was diagnosed last December with Sensory Dysfunction Disorder and I had a concerns even then as to whether it was autism or not. I am a little disgruntled with the developmental pedi in missing this as most of the symptoms were present, even last year and I specifically asked about Autism. The other thing is Teddy did not respond typically to the sensory piece of OT, meaning when other therapists worked with Teddy after doing certain things, he would not respond as other kids did. TEddy does have some quirky behaviors as well. He has slight fixation with spinning, he does not have any pretend play skills, and he has some preoccupation with certain toys. Again he does not fit your classic picture in many ways. They used 3 different modalities to determine Teddy's diagnosis.

If you are uncertain, get him tested. It maybe a label but I am not letting it define my child and who he is. I am still planning for inclusion with Teddy and my goal is for him to attend college, if he desires. Please PM me if you want. I have heard some great things about ABA and I am hoping to see results.

Carrie

 

[disneygal66]

My DS is 6 and was diagnosed as autistic when he was 4. He has come along way in the last 2 years but his behaviors are getting worse. He started a regular Kdg class this past Sept and is really having a hard time adjusting to the larger class and different teachers (He was with the same teacher and in a small class of 10 kids for 3 years pior to this year.) We are starting Responsive Teaching therapy with him next month. It is a behavior driven therapy which involves parent interaction and play. I am curious about the ABA. I have heard of it but how do you get started and how does it get paid for? Will insurance pay for it? Any info you can give would be a help because I have no idea where to start with that.

Thanks!!

Mary

 

[disneydenisel]

You sound like a very strong and positive person . Your son is young, he sounds bright. Intense, early intervention will go a long way toward filling the gaps in his speech, eye contact, and behaviors.

My DD7 was diagnosed with autism when she was 2 years, 3 months old. The county recommended speech therapy, nothing else, and we didn't know any better to ask for more. At 2 years, 9 months, her speech therapist said that she had verbal apraxia. We had more thorough tests done just before she turned 3, and the diagnosis was severe autism and sensory integration dysfunction. She also has hyptonia (low muscle tone), fine and gross motor delays, seasonal affect disorder, auditory processing disorder, and anxiety disorder.

At age 3 years, 3 months, we started her with a Greenspan "floortime" play therapy program. We also had private OT in addition to 1 hour/week of school-funded OT. When the School District (SD) funded 2 hours of speech a week, we doubled it. We placed her in a mainstream, private preschool at that time, with a shadow aide. We had to fight with the SD for these services and partially fund the aide. Soon after preschool began, DD began babbling and sounding out word approximations. DD began to talk when she was 4 years, 2 months old, the day after preschool was out for the summer. She basically began reading from a book on that very day!

Life is still a struggle every day, but she is enrolled in a public mainstream 2nd grade classroom with a shadow aide now. She has pull-outs for speech and OT, and a social communication/emotional regulation program that just started last week. She sees a psychologist for her anxiety disorder every week, and she sees a private speech therapist for social groups when we can fit it in.

We tried ABA for both her and my DS4 (diagnosed autistic at 2). For us, Greenspan worked much better and was more natural. Maybe we have really awful ABA providers where I live, but I did not care for their methods. DS is now in a mainstream preschool this year without an aide, and he receives group speech services for articulation delays only. We still provide some Greenspan play therapy for him, and individual speech therapy. Next year, he should be enrolled in regular Kindergarten. We are amazed at their progress, while still saddened by hopes and dreams lost. But we've replaced them with more realistic expectations (tonight was "dinner therapy" which means going to a restaurant and seeing if we can survive) and new dreams. There is a book a friend loaned me, "You Will Dream New Dreams," which was very inspirational.

Our insurance covered 100 speech sessions at 70-90% and 12 OT sessions @ $25 each (out of $100) per year. ABA, school OT and school speech, was covered by the SD. Our Greenspan play therapy programs were paid for by us, initially, and later partially funded by the SD. We found the consultant, bought the books, recruited the tutors, trained the tutors, and paid them. We submitted invoices to the SD for partial reimbursement.

I hope this helps.

 

[leanne11]

i never heard of this?

 

[Bugsmom73]

Applied Behavioural Analysis.

Disneydenisel- we actually do floortime already, it is how we play with our kids. I am going to look into getting the book and probably doing a combo of both.

 

[belle&beast]

Applied Behavioural Analysis.

Disneydenisel- we actually do floortime already, it is how we play with our kids. I am going to look into getting the book and probably doing a combo of both.

I'm a preschool speech therapist and this is the best way to go! I have seen great improvements in children using just one or the other, but in my opinion, the combination seems to be the key. Plus, every child is different and you never know which is the best route. Best of luck to you and your family- it sounds like you have a good plan in place.

 

[jodifla]

I agree 100% You are doing the best possible thing. Just to give you a little hope... One of my sons (started aba at 20 months) is now testing not even near the spectrum He did so well and it took us 3 months of nothing but the basic programs (ie Look at Me) and then he just flew. He is in a 1/2 day spec ed & 1/2 day typical program now (2.9 months). His teacher keeps questioning his diagnosis (which is silly if you had seen him spinning in the light striations. walking backwards & flapping). We are just about 100% sure he will be in a typical K in 2 years.

My older son still scores on the spectrum but I understand that he began later (around 3) so it just goes a little slower. He's still doing great though.

Good Luck.

But how is this possible? My understanding is once you are autistic, you are always austistic....

I think there's a lot of wrong diagnosis going on out there.

 

[jodifla]

Applied Behavioural Analysis.

Disneydenisel- we actually do floortime already, it is how we play with our kids. I am going to look into getting the book and probably doing a combo of both.

In all the studies I've seen, only the original ABA trials years ago had any positive results. They've never been re-created.

Floortime, on the other hand, gets lots of positive results.

 

[stenickar]

In all the studies I've seen, only the original ABA trials years ago had any positive results. They've never been re-created.

Floortime, on the other hand, gets lots of positive results.

I can attest to the fact that with or without re-creating the studies ABA works. I have 2 children with autism. Both are adopted(almost for dd) and both had little to no early intervention. My ds had sporadic intervention until he came to live with us at 3.5. Since then he has had ABA program both at home and school. He is essentially non verbal, but is able to do things that I never could have imagined 6 years ago. My dd had no intervention until age 6 when she came into DHHS custody. The first ABA consultant she had was horrible and dd didn't do well. Now at this school with different consultant she is learning something new every day
My kids are very different but both have done very well with ABA. I have also worked with kids with autism and found ABA to be effective for all of the kiddo's I have worked with.


It is important that newly diagnosed families not be discouraged from trying different interventions, or maybe a combination of strategies. Each family will need to try a lot of different interventions, therapies and strategies to see what works best for them and their child. We use ABA but I also use strategies that I have learned from working with therapist for my other foster children. You can't put all of your eggs in one basket.

Each child with autism is so different . Although they may exhibit similar behaviors we have to remember they are still individuals .

 

[belle&beast]

It is important that newly diagnosed families not be discouraged from trying different interventions, or maybe a combination of strategies. Each family will need to try a lot of different interventions, therapies and strategies to see what works best for them and their child. We use ABA but I also use strategies that I have learned from working with therapist for my other foster children. You can't put all of your eggs in one basket.

Each child with autism is so different . Although they may exhibit similar behaviors we have to remember they are still individuals .

You are exactly on target here! You said what I was trying to say so much better than I did!

 

[SandrainNC]

Does anyone know if ABA can be used on a child with Down syndrome with good results? My son has Down syndrome and is nonverbal (he uses sign language), but I don't know a lot about ABA. But would look into it if it has been shown to help. No one has ever said anything to me about using it though.

Thanks!

Sandra

 

[Torontogal]

Hi there,
My heart goes out to you. I was so worried about my 3 year 9 month old. We just took him to a team at Credit Valley Hospital here in Mississauga because we were worried about some "red flags."
He has speech delay, not consistently using eye contact, likes to rock and flap when excited. He is very loving and happy. No other unusual behaviours. The team consisted of a child psych/OT/Speech Therapist and a psychiatrist. They all said he is find. The child needs to have at least 12 behaviours for it to be Autism. I would get a second opinion.
My friend's child was disgnosed recently and she is going through many programs now.
All the best to you.