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Robin
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Posted: April 29 2005 at 5:58pm | IP Logged Quote Robin

Garret is 11 years old and causes me constant anguish. I've thought that he might be slightly autistic, but then after reading all the symptoms I decide that he probably doesn't. He was late in speaking his first word and since I was on welfare at the time, they made him go to speech classes. He said his first at about 2 1/2 years. He was a very happy baby and played with his brother who is a year younger. In the beginning he seemed to be gifted and learned to read and spell almost instantly.

I've always been a loner, my mom is my only friend, so we don't socialize all that much. He does take music lessons and every so often we get together with homeschooling families to do something... Maybe four or five times a year. I've always thought that he was "wounded" because of the situation of being in a single parent home until he was four and then when I married his step-father (who adopted him), he was witness to some physical and verbal abuse - though not much and the physical abuse has stopped since then - from his stepfather towards me. My Dad is also rough and impatient (victim of abuse himself). Mix this in with my impatience and I believed I had ruined him. But lately I've begun to think that perhaps he does have a touch of autism. I'll list the reasons why here:
*constantly walks with his eyes lowered (I always remind him to keep his head up and look people in the eyes and greet them - meaning his brother and me - but to no avail) He sometimes even turns away
*likes to "hide out" in his room
*stays "stuck" on one interest for years
*his face always looks emotionless (I constantly tell him to cheer up and sometimes this drives him to tears... He tells me he is happy and that he's crying because I think he's not)
*in comparison to his brother (who's 10 yrs) his vocabulary and understanding is elementary... for example, if I read a poem and ask what he thinks the verse meant, or if I ask sometimes very simple questions he will often answer with "I don't know". It's mostly a lack of common sense. Yet some days he seems to understand "normally".
*Lack of affection (again, sometimes he will surprise me)
*Don't know if this has anything to do with it but he's a perfectionist like his mother

If anyone has any comments it would help greatly and prayers would be appreciated.

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Posted: April 29 2005 at 10:44pm | IP Logged Quote jdostalik

Robin,
I will pray for you and for Garret. Remember, God gave you this child and you're the best parent in the world for him...This is what I tell myself when I am feeling discouraged--and it is true!

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Posted: May 02 2005 at 7:57am | IP Logged Quote MEBarrett

Dear Robin:

If impatient moms and difficult circumstances ruined children that easily there would be almost no "normal" people. Let yourself off that hook. While it is certainly possible for parents to damage their children the fact that you are this concerned for him makes me fairly certain you have not. Some of the symptoms that you listed are classic autism spectrum indicators. This is not anything you have done to him, it is nuerological. I also think many of those symptoms can be explained by becoming a teenager and maybe a learning disability.

Your best bet would be to take him to a pediatric nuerologist or pyschiatrist. Many of them specialize now in autism and having a clear diagnosis can help. You should also be aware that there are a lot of things that can be done to improve these symptoms. Sometimes it is as easy as a change in diet, sometimes different therapies will help and there is a variety of meds that can be helpful in him feeling more in tune with the world around him. He might be having sensory problems which makes the world around him too intense to bear. It is awful for a child who hears things louder than we do (my son) or sees color brighter than we do or can feel every fiber in the fabric of his clothes. It is a maddening distraction but they don't realize that everyone in the world does not feel this way as well. It confirms their belief that they are somehow not as "smart" as others because they think others can do things feeling this way without trouble.

The most important thing you can do for Garret, before even getting him help, is to let him know that he is loved. Believe it or not he might not realize it. Children who have these difficulties often can't relate to emotions and can't "read" them in other people's faces or actions. Make sure he hears that know matter how impatient you or anyone else is, you love him. He has to hear that even though he does not do things like his brother, you love him. My own son, Ryan, needs this kind of re-inforcement much more than others do. He is not always in "tune" with the world but he has managed to figure out that he is different. I have told him that he is different but that we love him and thank God daily for him and his differences. You might think it is idiotic to have me tell you to tell your son you love him but it makes a mighty difference in how he sees himself and his place in the world when he is sure there is one place in the world he can go and be loved and accepted. You might think he knows it already and he may, just make sure.

To have a child with needs like this is to die to self a thousand times a day. It is to trust God to provide the patience (which does not come to me at all without His grace) and the energy and the wisdom that is needed to make our children the best child of God they are able to be. God chose you for this boy, ask for guidance from Him and tell Him ( a million times a day if necessary) that He has to help. The Blessed Mother loves you and your son and will also intercede mightly on your behalf. Garret is your wonderful, beautiful child and he is also your pathway to a glorious eternity, enjoy the journey.

Please PM me if you need more specific resources, I will do all I can to help.



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Posted: May 02 2005 at 10:47am | IP Logged Quote momwise

I'm so glad Mary Ellen answered your post Robin. I have been praying for you and wondering how to answer your questions, as I don't have a child with autism.

I have had a child with sensory perception issues and one thing that might help is to make sure you are with a sympethetic pediatrician who will give you the referrals you need. Denver's Children's hospital recognizes Sensory Perception disorder and since our pediatrician was agreeable, we were able to have all the testing covered by insurance. Occupational therapies are highly successful for many of the sensory disorders.

You can turn to the Divine Mercy for peace. Trust in God's mercy. It is limitless. I'll keep praying.

Come Holy Spirit!

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Posted: May 02 2005 at 2:31pm | IP Logged Quote Robin

Thank you Mary Ellen for your reply. It brought tears to my eyes while I read it. And thank you to all who have prayed for us.

I think I will ask our Pediatrician to refer him to a specialist. I just hope the Dr. will understand. Garret is extremely sensitive to cold and heat and little things like one or two mosquitos will keep him inside all summer long. One day I looked outside to see him with a huge coat and hood on running through the field, so I called him in and asked what in the world he was wearing a coat for when it was almost 100 degrees outside and he said it was because of the mosquitos. I went outside for quite a long time and did not see or feel one mosquito. Things like that make me think that what you said may be true about the world being too intense for him.

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Posted: May 02 2005 at 3:09pm | IP Logged Quote MEBarrett

Yes, that is exactly the kind of thing I was talking about. Sensory problems can be greatly reduced by occupational therapy and sometimes medication. It may take some time for you and a doctor to figure out what he needs and in what combination but it is worth figuring out. Ryan's O/T made such a difference in his ability to cope. He no longer needs it and he takes a medicine that helps reduce the sensory input in his brain. It just helps him to focus a little better.

I will definitely pray for you and Garret.



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Posted: May 02 2005 at 3:57pm | IP Logged Quote Taffy

Hi from a newbie here...

I'll post an intro on the intro board later today but wanted to take a minute to comment on this. My oldest of three boys is autistic but I didn't know how to answer Robin's question adequately so I was relieved to see Mary Ellen respond

Vic is 8 and his only real sensory issues now involve sound and vision (hypersensitive to both). He also gets itchy when challenged academically or linguistically (don't know why but there is a definite correlation). Anyway, I'll second the sensory integration advice... it can be very helpful. "The out of Sync Child" and "The Out of Sync Child has Fun" by Carol Kranowitz are VERY helpful for finding ways to improve sensory integration problems.

From personal experience, I've noticed that Vic is able to handle stressors so much better since leaving school (we've only started "officially" homeschooling last month). Other things that have helped include...

      - vigorous exercise (needs to break a sweat)

     - change in diet (i.e., more whole foods, cooking from scratch, etc., limited foods that are commercially processed or with artificial flavours/colors/preservatives)

     - supplemental magnesium (500 mg/day)
                      Marylin Shannon comments on magnesium quite a bit in her book "Fertility, Cycles and Nutrition" and in her column in the "Couple to Couple" newsletter. I know that for both Vic and myself, it really helps to calm feelings of anxiety and sensitivity.

I can really relate to Robin as I am also a loner and have had to really learn how to relate and teach Vic to be more responsive (a daily challenge). Vic was my first of three (and hopefully more) and I really knew next to nothing about how to raise children when I had him so I understand where you're coming from Robin. I hope that you're able to find some answers. On the plus side, I have learned how to open up to others so much and how to be less of a loner in my efforts to bring Vic out of his shell. God does all things for a reason!

Good luck and God bless...

Liz

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Posted: May 02 2005 at 4:22pm | IP Logged Quote MEBarrett

Taffy wrote:
He also gets itchy when challenged academically or linguistically (don't know why but there is a definite correlation).


How funny, Ryan does the same thing. I thought it was just one of his oddities. Interesting...


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Posted: May 03 2005 at 8:45pm | IP Logged Quote momwise

I forgot all about this. There are a few things you can do for Garrett right now before you even go to the drs. They may or may not help, but they can't hurt. Somehow these activities help in they way kids process the sensory input.

First of all, let him slide around on a tile or wood floor(it has to be slick) on his stomach several times a day. He can do it for 5 or 10 min. whenever he's had too much input or he can't concentrate on something.

Next, if he likes it, have him sit or stand and you stand behind him and push down with steady pressure on his shoulders. Don't rub or pat, just push down like you're pushing him down into the floor.
When you hug him, give him bear hugs with no patting or tapping or rubbing. Just pressure.

If I think of more activities I'll post them.

come Holy Spirit!


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Posted: May 06 2005 at 9:25am | IP Logged Quote momtomany

MEBarrett wrote:


To have a child with needs like this is to die to self a thousand times a day. It is to trust God to provide the patience (which does not come to me at all without His grace) and the energy and the wisdom that is needed to make our children the best child of God they are able to be. God chose you for this boy, ask for guidance from Him and tell Him ( a million times a day if necessary) that He has to help. The Blessed Mother loves you and your son and will also intercede mightly on your behalf.



Mary Ellen, I know that you wrote these beautiful words for Robin, but I was pondering them yesterday at church when John was being, well, John. Thanks for your insights!
Robin, my son isn't autistic, though he has his own issues, so I can't really add to these helpful comments here, but you are in my prayers.

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Posted: June 02 2005 at 12:08pm | IP Logged Quote MEBarrett

Robin:

You have been popping into my mind a lot today, how is it going? Has Garrett seen any specialists?

You remain in my prayers.


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Posted: June 02 2005 at 10:43pm | IP Logged Quote Robin

Your message is a little scary to me considering the circumstances. It really got my heart racing...

Please pray for me. I haven't been able to go to the doctor with Garret yet... For the past two weeks I've been having pains in my left arm and hand... on and off... and also its been hard to "catch a deep breath". And lately I've been having little pains in my back, my other arm, and my chest...my hands and feet get kind of numb... I've been known to have bouts of panic attacks, but this seems different since I'm not panicky. Well, not at first... but when I start thinking it's my heart I do get kinda panicky. My moms going to bring me see a nurse practitioner tomorrow at a clinic for low income patients with no insurance.

I've spoken to a couple of Dr.'s at church and they both seem to think it's stress.

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Posted: June 03 2005 at 2:05am | IP Logged Quote Willa

Robin -- I'm glad you are going to be able to see a health care professional.   I hope you will be able to rest in God's grace and that there will be some answers and peace for you.   I can remember a really stressful time in my life when every day was difficult to get through and though I trusted in God's providence, I couldn't "feel" secure about it. Anyway, I'll be praying for you regularly and for the situation with your son.

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Posted: June 04 2005 at 11:21pm | IP Logged Quote Robin

Thank you Willa. Now I won't die of shame from posting while I'm not in a calm state of mind.

Mary Ellen, the reason your post made me anxious was because I was already anxious and the "popping into my mind alot" quote reminded me of many stories our family tells about things like that happening right before someone passes away. And it's happened to me twice with two family members. They're constantly on my mind and then a few days later... So my panic attack mind thinks, "Ok, no one in my family would pray for me so God's inspiring someone who would pray for me! OH NO! I really am about to die!"

Now it's just funny!!
(It really doesn't happen often... last time I had this was about three years ago... and it always lasts about 2-3 weeks)

Thank you for your concern and I will post what I find out about Garret as soon as I can get everyone up and out to the Doctor.

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Posted: June 08 2005 at 11:11pm | IP Logged Quote Robin

Here's an update: I brought Garret to our Pediatrician and he said he's sure that he doesn't have autism. He said this before I could give any reasons why I thought he might have it and he's only seen Garret a few times over the years for very short periods of time. He explained that there's no such thing as having slight autism and that if my son had it he would notice it right away. After I told him my concerns he said that he might have a learning disability and referred me to a Children's Assessment Center about 2 hours away in Baton Rouge. I have to call tomorrow to make an appointment, but I'm concerned about what questions they will ask him. He said they'd give him a psychological evaluation and test him for any disabilities. I don't want them asking him any questions about inappropriate things, but if I ask them not to they might think we're guilty and trying to hide something... I've never had any experience with this sort of evaluation so I don't know what to expect. The pediatrician at the Center is Dr. Valerie Bendt (that name sounds familiar and I know I read it somewhere on the internet, but I think it's probably just someone else with the same name???). Any advice on what to do?

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Posted: June 09 2005 at 12:44pm | IP Logged Quote momwise

Robin,

My ds's evaluations for sensory disorders and LD consisted of a set battery of tests which really had no leway for the therapist to do anything innapropriate. Plus, I was allowed to watch through a 2-way mirror for the seatwork and I followed around and watched all the large and small motorwork skills.

I'm sure there are moms on this board who've seen this type of psychological testing and have more info. I will keep it in prayer though and suggest St. Raphael's intercession; he's the patron of Good Meetings.

God bless,
Gwen in Denver
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Posted: June 21 2005 at 2:07pm | IP Logged Quote MEBarrett

Robin:

I just caught up with your post.

I don't agree with your pediatrician about autism. Classic autism is absolutely noticable right off the bat because it is usually accompanied by some form of mental retardation. The fact that Garret does not look like that does not mean that he does not fall within the autism spectrum. The AMA has expanded the definition of autism to include a spectrum of disorders that are nuerological in nature and common to some children. For example; children on the "spectrum" often have ADD; ADHD; OCD or they are refered to as PDD/NOS (like my Ryan)which is Pervasive Developmental Disorder Not Otherwise Specified. Means he doesn't develop normally.

Anyway, get a specialist and don't worry so much about their questions. I was always able to sit in or observe evaluations. The questions they will ask will mostly focus on his ability to process and learn it won't be a pysch evaluation based on anything very personal. Feelings of anger or helplessness may come up if he is able to articulate it but it will mostly focus on his reactions to different situations. They usually work off of some very standarized scales and tests. If you call the school district a school pyschologist may be able to recommend someone closer who can give you an evaluation. The school pysch will also be able to tell you what tests are normal. One is called the Conner Scale and there is one that is called Watchler (spell?) but I don't remember any others. There are many based on age and ability to communicate.

Hope this helps.



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Posted: June 21 2005 at 3:51pm | IP Logged Quote mom3aut1not

Robin,

Your pediatrician doens't know what he's talking about. Classically or severely autistic people are about 10% of the people now consiered autiistic. Eons ago only that small segment was considered autistic. The rest, even though they might be severely impaired, were ..... left to their own devices. I have met/emailed adults with autism who were not diagnosed who struggled tremendously. Some were homeless at times. At least one I know about developed a drinking problem. For some people it was even worse. Even the relatively successful people had problems interacting with other people, dealing with fears or rituals, and so on. So they expanded the diagnostic criteria. Then they realized that many people *almost* fit those criteria and for most practical purposes (especially teaching) PDDNOS kids need the same kind of help and understanding that autistic kids do.

Autism currently is divided by high-functioning and low-functioning and by mild,moderate, or severe. PDD is a spectrum that includes autism and also PDDNOS (almost autistic) as well as a couple of other disorders. I have a severely or classically, autistic low-functioning brother, two mildly autistic, high-funcitoning dds, and 1 young autistic ds. THere are at least three other people in the family suspected of being autistic.

One of the reasons my db is doing so poorly is that he had no real help until he was 12 and that lasted only until he was 14. I have a much better understanding of what to do with my children than my poor parents did. In fact my 17 yo dd was doing worse than my db did at a young age. My young son has poorer language skills than my either of my autistic dds, but has fewer sensory problems than one his big sisters. (God be praised! He is doing Sing, Spell, Read,and Write K!)

Autism varies tremendously, and to me it sounds as though checking out pdd/autism is a good idea. I don't know your son, but in your initial post it sounded as though he might well be autistic. Maybe he's not. Maybe he is. It's worth checking out.

My advice is:
1) My children were young when they were first evaluated, and the evaluation was mainly based on a detalied questionnaire on our children's early development. Try to nail down when he said his first word, how big his vocabulary was at cetain ages, and so on. Look at albums,. baby books, etc. Try to see if any paperwork remains from his early speech therapy.
2) In addition note down any little oddities. (If you can repeat this at intervals, it can be very helpful.) I remember that I kept adjusting and adjusting to my daughter's oddities and didn't fully note how much I had adapted until I wrote it down. I also hadln't realized how much of what she did was atypical. I wrote everything down she did that was unusual for a day or two every three months for a year. That little record helped the diagnostic team to evaluate my youngest dd. (Sometimes a diagnostic will give a tentative diagnosis and evaluate later to see if something can be ruled out.)
3) Ifound the questionnaire (actually a debriefing on each of my dds) was exhausting. (My ds's diagnostic procedure took place over a longer period of time as he was part of a research study.) Do what you can to energize yourself.
4 )Make sure the people who evaluate your son know what they are doing. I know of people who didn't, and rectifying such a mistake can be time-consuming and expensive.
5) If he has an OT evaluation or a speech and language eval, ask the evaluators to give *specific* advice on how you can help him and how his education should be structures.
6) Check out www.headsupnow.com. It's a hsing business by a mom who has kids with ADHD and sensory problems IIRC.
7) Of course, pray.

Sorry this is rushe, but my ds wants to play with me. <smile>

In Christ,
Deborah


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Posted: June 21 2005 at 8:20pm | IP Logged Quote Robin

Thank you Mary Ellen and Deborah. I thought the Ped. was rash in saying that he was sure Garret wasn't autistic, and I know that *something* needs to be seen about... and thanks for easing my fears about the tests... now I just have to get in touch with the clinic again and answer a fifteen minute questionare and then the appointment will be made.

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Posted: Sept 29 2005 at 3:56pm | IP Logged Quote KC in TX

Just read this post, Robin, any update?

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