3rd time worrying about my 3rd kid with Autism

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johnle
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21 Jun 2021, 9:32 pm

With my previous 2 kids, I worried a lot about them having Autism between 1 and 2 but now they are 8 and 4 and are not autistic. Although they still have some minor symptoms relating to autism such as my 8 year daughter keeps talking about numbers, obsessed about a certain topics, talk about stats, bring up topics out of no where, a little shy in social situations. I am an engineer and her behaviors are exactly like me. My 8 year old daughter is in Gate program and excels with Math, and Reading. She also has 3 close friends. My 4 year old son had a speech delay, and did a lot of stims when he was 2 and his M Chart score was only 4. He is fine now but seems to have ADHD. I took the adult autism test and my score seems borderline.

10 months ago, when my youngest was 15 month old she was developing normally and knew about 50 to 100 words that she was able to label in the books. She knew the alphabet and numbers. She played peek a boo, pointed to things, played make believe and responded to her name. However, she never used language to communicate or ask for things. My wife and I thought finally we don't have to worry about autism anymore. In the last 4 months my daughter has regressed and became very withdrawn. She now spins all the time, doesn't respond to her name, she climbs constantly, actively avoid eye contact, and acts as I am and her siblings are not there and prefers to play alone. The only person she interacts with is mommy. I reviewed the posts I have made with my older daughter and son and their symptoms were much milder compared to my younger daughter. My younger daughter M Chart Score is 14 compared to my older daughter at around 7 and my son at 4.

I have dealt with anxiety problem most of my life and many times I have overreacted. However, with my young daughter's many symptoms and extremely high M Chart score I feel so awful.

Regional Center has scheduled an evaluation for her next week. I am praying that she will be OK.

Thank you for reading,



timf
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22 Jun 2021, 7:06 am

A trigger subject that many shy away from is vaccinations. I do not believe that vaccinations themselves cause autism, but they may have a rare temporary side effect of brain swelling that might cause brain injury.

Another potential explanation is a developmental stage where the perception of threat arises inducing anxieties that are reduced by selective mutism.

Regardless of the cause, a child can be engaged and drawn out over time as much as their situation allows. You want to avoid forming an assumption of limitation which might cause you to limit your encouragement of the child.

Like most things in life, you want to do the most you can with what you have to work with. One thing to keep in mind is that engineers can sometimes take a task oriented view which can preclude the emotional support needed to reduce anxieties.



magz
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22 Jun 2021, 8:02 am

Were there some big changes in your home/life recently? Like changing job, moving, some pandemics-related changes in family routines?
"Regression" is often a results of too much stress and changes can be very stressful. My daughter had horrible "recession" when in second grade she suddenly had a different teacher with completely different, very old-school style. In a few weeks she moved from "shy, introverted, maybe dyslexic" to full-blown multi-faceted disability.
We're climbing out of it now. AS diagnosis opened the option for partially individual classes that make a world of difference for her. And her hamster helps her deal with stress. Now she's again introverted, shy and possibly dyslexic but otherwise capable of dealing with life on the level expected for a 9yo :)


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johnle
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22 Jun 2021, 9:57 am

My daughter was sick with a cold with cough and runny nose for 6 weeks when she was about 22 month old. When she turned 2 year old, we took her to preschool that her 4 year old brother is also going to. She didn't like it and cried for 6 weeks before she stopped crying when we dropped her off. I am just unsure when the Regression started. I hope that it is mostly stress related and therapy can help to reduce symptoms and she can go on with life like your daughter albeit with some social difficulties.

magz wrote:
Were there some big changes in your home/life recently? Like changing job, moving, some pandemics-related changes in family routines?
"Regression" is often a results of too much stress and changes can be very stressful. My daughter had horrible "recession" when in second grade she suddenly had a different teacher with completely different, very old-school style. In a few weeks she moved from "shy, introverted, maybe dyslexic" to full-blown multi-faceted disability.
We're climbing out of it now. AS diagnosis opened the option for partially individual classes that make a world of difference for her. And her hamster helps her deal with stress. Now she's again introverted, shy and possibly dyslexic but otherwise capable of dealing with life on the level expected for a 9yo :)



magz
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22 Jun 2021, 10:37 am

The preschool might have been the thing. It's noisy and full of people.
Does she have sufficient time at home to unwind? Maybe her social withdrawal and unwillingness to interact is just a result of fatigue from the whole day of social interacting.


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johnle
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22 Jun 2021, 10:57 am

Thank you for your encouragement. I know it is not healthy for me to obsessed about this and I should focus on getting evaluation and therapy for my daughter. I have lost sleep over this and I have to listen to hypnotherapy to put myself at ease and sleep better.

timf wrote:
A trigger subject that many shy away from is vaccinations. I do not believe that vaccinations themselves cause autism, but they may have a rare temporary side effect of brain swelling that might cause brain injury.

Another potential explanation is a developmental stage where the perception of threat arises inducing anxieties that are reduced by selective mutism.

Regardless of the cause, a child can be engaged and drawn out over time as much as their situation allows. You want to avoid forming an assumption of limitation which might cause you to limit your encouragement of the child.

Like most things in life, you want to do the most you can with what you have to work with. One thing to keep in mind is that engineers can sometimes take a task oriented view which can preclude the emotional support needed to reduce anxieties.



johnle
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22 Jun 2021, 11:02 am

Yes, when she goes home at 5pm, she has dinner and then we take her to the park right next to our home for her to play and run around. She also likes to sit in the stroller as we walk around the neighborhood. In the stroller, she relaxes and looks around. At home when her siblings play, she plays in the same room but not interested in interacting with them. Sometimes my son wants to race around the living room and 70% of the times she would participate by running after him so it is one of the few positive signs that I see. I am trying to find more games that she is interested in and can play together with her siblings and us.

magz wrote:
The preschool might have been the thing. It's noisy and full of people.
Does she have sufficient time at home to unwind? Maybe her social withdrawal and unwillingness to interact is just a result of fatigue from the whole day of social interacting.



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25 Jun 2021, 1:51 am

It is also possible that something wrong is happening at preschool. It could be serious, or it could be "small" but uniquely stressful for your daughter. My son's preschool was traumatic for him because of their nap time rules. It may seem silly, but it was a huge stress for him and I was too stressed out at the time to properly understand just how much it affected him.

Another time I started to see potential regression patterns in my son was in first grade and, again, it turns out there were stress factors (disgraphia) that weren't being handled right.

If your daughter is on the spectrum there is every chance in today's world that she will be fine, but as parents you have to take all the signs of potential stress factors seriously. 6 weeks of crying at a preschool is not normal, and while I know how incredibly difficult making changes with preschool are, I would advise giving serious thought to if a change is needed and what the alternatives might be. If your daughter is on the spectrum, the more you meet her needs, the better her prognosis will be.

Over and over again raising my son, every hint of regression could be tied back to a stress factor that would not have been obvious if we had not gone searching for it. By finding and mitigating the stress factors, we really changed the game. As a young adult, my son is by all counts on a solid and "normal" path. Even though some things will always be harder for him than they are for other people, if I could have known the amazing young man he would grow into, I would never have felt an ounce of anxiety about his future.


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johnle
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25 Jun 2021, 10:25 am

Currently she is adapting well at preschool and seems to be comfortable. As we are waiting for evaluation and looking back the signs of autism were all there very early on. Before language regression, she used language but only for labeling things, she doesn't use language for communicating. I was never able to connect to her emotionally. Initially I didn't think much of it and attributed it to she is more attached to mommy. I took the M Chart test and she is always 14 or higher which indicates very high risks. My wife and I are going through a period of grief as every sign of autism is so apparent with her. I know my daughter is still there but we are still feeling a lot of pain. We need to get rid of expectations and live in the moment. We will try our best to get help for her to open her up and help her to communicate.
Congratulations on your son's positive development. Was he diagnosed?

DW_a_mom wrote:
It is also possible that something wrong is happening at preschool. It could be serious, or it could be "small" but uniquely stressful for your daughter. My son's preschool was traumatic for him because of their nap time rules. It may seem silly, but it was a huge stress for him and I was too stressed out at the time to properly understand just how much it affected him.

Another time I started to see potential regression patterns in my son was in first grade and, again, it turns out there were stress factors (disgraphia) that weren't being handled right.

If your daughter is on the spectrum there is every chance in today's world that she will be fine, but as parents you have to take all the signs of potential stress factors seriously. 6 weeks of crying at a preschool is not normal, and while I know how incredibly difficult making changes with preschool are, I would advise giving serious thought to if a change is needed and what the alternatives might be. If your daughter is on the spectrum, the more you meet her needs, the better her prognosis will be.

Over and over again raising my son, every hint of regression could be tied back to a stress factor that would not have been obvious if we had not gone searching for it. By finding and mitigating the stress factors, we really changed the game. As a young adult, my son is by all counts on a solid and "normal" path. Even though some things will always be harder for him than they are for other people, if I could have known the amazing young man he would grow into, I would never have felt an ounce of anxiety about his future.



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25 Jun 2021, 8:16 pm

My son received a tentative school use diagnosis when he was 7, and another specific to college and testing disability services at 17. We never went for a full medical diagnosis because we were able to meet his needs with the limited use diagnosis. I liked splitting my hairs to get my son what he needed without putting a neon sign on him. He passes for NT to people who don’t know a lot about autism.

It does sound like your daughter may have more obviously affected areas than my son did, but that is hard to know from a message board. Even so, prognosis can be really good if a suitable environment is created. Focus more on her, getting inside her by watching her, and that might reduce your anxiety.

I do remember having to grieve the vision I had had of who my son would be. The vision was always more about me than him, but it still felt real. In a way we go through that process with our NT kids, as well, but with them it tends to get handed to us gradually as they grow up and show us who they are, instead with the thud of a label.

I do adore my son exactly as he is today. His soul is so giving, even if he does have to be prodded to remember birthdays.


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johnle
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30 Jun 2021, 7:55 pm

My daughter was evaluated today by a Speech Pathologist, Occupational Therapist and Behavior Therapist. They concluded that she has major delays in speech and social skills. Although they are not allowed to give a diagnose of Autism when I want them to let me know, they said that her symptoms and lack of social skills is "consistent with Autism". My wife cried a lot because she was hanging on a sliver of hope that my daughter would not be autistic. I am totally exhausted even though I am not surprise at the diagnosis.

They also gave me a letter to give to my daughter's Pediatrician so she can see a Neurologist/Psychiatrist.

They said that it is best if my daughter gets ABA therapy first to help her to interact, imitate before starting speech therapy. They will check her monthly. I still don't know how many hours of therapy she will get.

I have a question. Outside of the ABA therapy she will get with the government program and we don't know how much but it is still at least 3 to 4 weeks away. Do you think it is good to get additional ABA and Speech Therapy immediately if I can afford to pay out of pocket? For example 2 hours on Saturday and 2 hours on Sunday. Is time so critical now 2 to 4 weeks make a difference?

I have been looking at a few ABA/Speech Therapists that work on their own and they charge between $60 to $110 an hour. I don't mind spending some money if it helps her.

Thanks,



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01 Jul 2021, 8:53 pm

johnle wrote:
I have a question. Outside of the ABA therapy she will get with the government program and we don't know how much but it is still at least 3 to 4 weeks away. Do you think it is good to get additional ABA and Speech Therapy immediately if I can afford to pay out of pocket? For example 2 hours on Saturday and 2 hours on Sunday. Is time so critical now 2 to 4 weeks make a difference?

I have been looking at a few ABA/Speech Therapists that work on their own and they charge between $60 to $110 an hour. I don't mind spending some money if it helps her.

Thanks,


ABA hadn't become popular yet when my son was young so I've had no personal experience with it. From what I've read and heard, it can be effective, but you have to be VERY careful what goals you are setting. Do not, for example, use ABA to teach your child things that are highly superficial, like looking people in the eye, which can be literally painful for some with ASD (when it is time for job interviews, they can quickly pick on the stare at the forehead alternative). ABA is stressful for the child, and quality varies, so do monitor the process.

Many here have agreed that Speech Therapy proved to be very useful as well as being an overall positive experience for the child. What I'm not sure of is at what age it becomes useful. By the time my son started getting therapies at age 7, speech therapy was an important key to him learning effective communication and continued off and on into high school. I had a child that loved to talk and enunciated well, but speech therapy goes much deeper into ins and out of how and why we communicate. My son's speech therapy also included a lunch bunch, where he could bring classmates and they played board games together to help learn social give and take. My son LOVED lunch bunch, and classmates were eager to be the ones invited to join him.

My son was disgraphic so occupational therapy was in the mix. At younger ages they worked on motor skills; by middle school they focused on typing. This was extremely important for my son.

So ... I don't actually have an answer for you, given that what each child needs is so unique. I would talk to a variety of people in the field about ages and stages and what might be helpful, then apply some old fashioned parental instinct.

I will also make the following observations:

1. Before your child hits school, one of the most important gifts you can give them is a little time to exist in the way they want to before the world places burdens and expectations that will force them to change. Pay attention to your child. Observe their hesitations and attractions; figure out what their sensory issues are, and learn what makes them anxious. The more you tune into your unique child, the more you can mold the world into a place they feel safe and thrive. This is so very important to success raising an ASD child.

2. Avoid the temptation to over-schedule as it will deprive you of the opportunity to actually understand your child. Plus, ASD children need more down time to unwind than NT kids do.

3. Early on, I was told to read, read and read some more. The more you read, the more opportunities you have to connect to information that will be useful to you as a unique family, and the better you will understand the things you observe as you focus on and pay attention to your child.


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johnle
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05 Jul 2021, 1:46 pm

Thank you for all of your advice. I have decided to hire an ABA/Speech Therapist to come to our house on Sundays for 1 hour to help my daughter and also to teach us ways to help my daughter to talk and participate better. I may increase it to 2 hours per week if we think it is needed. This is supplement to whatever therapy my daughter will get from the state.

Thank you for recommending us to read, I started reading the books "Here are ten things every child with autism wishes you knew" and "Raising a Sensory Smart Child..The Definitive Handbook for Helping Your Child".

I also started to pay attention to her stims to see what we can do to help her to relax more. Because she likes to bite her fingers and nails I think she like to have her hand and finger massaged with more pressure than usual. She also likes to rub her head on the carpet so I and my wife are giving her deep pressure head, neck and shoulder massage and it seems to help her to relax. She also likes to put things in her mouth even sand and dirt. I will find out what we can do to help her to meet her needs in this aspect. She doesn't have problem with eating, noise or light and behave very well in crowded places.

I and my wife and doing better as we have come to accept her diagnosis. We will try the best we can and try not to have any expectation.



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05 Jul 2021, 5:36 pm

I wish you luck on the journey.

Do also pay attention to what precedes the stims in hopes of reducing her triggers, although the stress can be cumulative and finding triggers can be difficult.


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