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#1 of 13 Old 06-27-2012, 04:00 AM - Thread Starter
 
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This post is all over the place- be warned! I have a lot of things going on in my mind, and I'd like some feedback from you mamas that have been here and done it. I'm sorry this is so long-winded. I don't have a lot of people to bounce these things off of these days. I appreciate any one reading...

 

Firstly- after our ped gave DS (23 mos) an initial "PDD-NOS" dx a few weeks ago, I started us on this long process of getting OT and/or speech thereapy for DS. We live abroad and will be returning to our home country for a 6-wk long summer vacation soon, and when we return here, we'll be moving to a different city. So even though we are still on waiting lists, I've stopped pushing to start therapy in our current city. My doctor actually suggested we wait six months before even considering trying to get therapy for DS, as he wasn't 100% convinced anything was "wrong" with DS. He said DS is still young and it might be too early to tell anything at all. So that's where we are now.

 

DS is now on a gfcf diet- I can't tell if it's having any effect. But after talking to other people about DS and our concerns and watching him so closely lately I'm utterly confused- it's really unclear whether he has ASD or something else, or nothing at all. His echolalia has stayed the same, maybe gotten a tiny bit worse but at the same time his spontaneous language and vocabulary have gotten better and his use of scripted language is actually really great and it's clear he understands everything we say and other really complex things. His ASD-symptomatic behaviours (spinning, lining up objects, hitting his head) have been pretty infrequent. He is still interested in typical ASD interests- parts of objects , numbers, letters etc. and he still doesn't have any interest in interacting with other kids. But he's also been able to learn some things lately- answering yes/no questions (mostly questions that need a 'no' answer, yes questions are harder), he has been pointing a lot since I started prompting him to do that, and he is as always very, very affectionate with us. Now that I'm encouraging more pretend play he is getting the hang of it- that I always thought would develop later anyway. Could he just have a language/speech disorder? Or a sensory thing? Or be developing slowly socially? Or all of these? Or some other disorder I know nothing about? I read about ASD a lot now and most of the time I'm thinking that it just doesn't sound like DS. But then I go down the checklists and it seems to be...sort of.

 

DH and I just keep going back and forth- some days we're thinking, he is just a kid developing a little differently. He'll catch up socially and he'll grow out of his echolalia. Then we see him with other kids and DS seems so different. [We were at a park last weekend with sprinklers and fountains that kids could run around in and there were twin boys 2 mos older than DS zipping about on scooters through the sprinklers (DS can't figure out ride-on toys or bikes, much less a scooter!) and interacting and having fun while DS was inspecting the elements of each water feature and pushing things down the drains in a very serious way, and ignoring all the other kids.] But many of the family members and close friends we know who we've told what is going on with DS think we are crazy and that he is just a little odd. Both my husband and I are also really odd and anti-social in our own way, so they think he's just taking after us. Which brings me to DH...

 

He is now almost convinced that both he and his dad are on the spectrum (Asperger's I guess). And the more we look into it the more it makes so much sense. So on our days when we are sure DS has ASD, we think this is genetic. He is taking right after his dad and grandpa. And I've been reading some interesting research lately about this.

 

And now this leads me to the current thoughts circling around all of this- we were planning to start TTC next month. We've talked about it a lot, and think we'll still go for it. DS seems to us like he is "high-functioning" on the spectrum (if he is on it) and we're hoping this means having another baby won't be something terrible for him or unmanageable for us. But we're also concerned about having another baby who may also have ASD- and that he or she may have it "worse" than we think DS does. It's kind of scary. Part of me feels like we can handle whatever comes, and that our family and our kids are ours and we love them no matter what and it would be great, just like things are (mostly) great with DS- a sibling might be really wonderful for DS too. Part of me feels like we shouldn't push our luck adn that we don't know what's to come in the future with DS and it's not fair to him to bring another kid into our family when we don't know what DS will need. 

 

Anyway, I apologize again for writing so much. If anyone has any comments or advice on any of my ramblings, I'd appreciate it again. 

Thanks.


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#2 of 13 Old 06-27-2012, 03:16 PM
 
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I wanted you to know I read this and I have been there in many ways. I think it's extremely common to go back and forth and question the dx. especially early on. I did it and I've seen it so often in other parents with more mildly affected kids. They can especially seem normal when they are just at home with you and you're not comparing to other kids as you noted. I'll just say that the fact that you needed to sort of teach those skills very young children pick up naturally is spectrum indicative if that makes sense. I did similar with my son and he did start pointing (appropriately) and finally got the hang of yes/no and on and on. His twin, though, just did all that naturally and very young if that makes sense. So I"ll be honest in that reading your post reminds me of my own back and forth ramblings about my son so I completely get it and, from an involved perspective, it sounds spectrum (and very familiar). At any rate our kids are going to benefit from autism related interventions because there are clearly some weaknesses there.

My husband is very surely subclinically spectrum. My son's twin is typically developing. There is an increased risk of course but it's not astronomical (I want to say 20% maybe?). Brothers would have a higher incidence of being "subclincal" or with characteristics if they have a brother with autism than girls I think. Though girls have been notoriously underdiagnosed so I'm not sure those stats are accurate. Anyway, I get your concern and I was often so glad I had two at once as I knew I would have driven myself nuts if I was going to have another after my son's diagnosis. Is daddy the same as your DH? I couldn't tell from your post. Of course that would increase the risk but, as in our case, certainly doesn't make it a sure thing!

Oh, I wanted to add something else. You can do therapy that might well be more effective than a therapist with your son if you would like. Hanen program has some really good materials for parent use for example.

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#3 of 13 Old 06-28-2012, 01:30 AM - Thread Starter
 
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Thanks so much for your reply. After reading my own post I was pretty sure no one would bother addressing such a rambling mess.

I'm having another day when I'm sure DS is on the spectrum after spending a morning in a pool with other little kids. It's nice to know that you went through this too- I don't want to be in denial, I know that won't be helpful for DS. What you said helps me come a lot closer to settling on our suspicions of ASD- and I think a full realization will be a good thing for our family. I actually don't think I'm in denial- but it's hard when other people keep telling me that I'm wrong. I question myself- but I spend the most time with DS, I know him best and I think in my heart I know this  is a part of who he is. Right now it's especially hard as we wait to get settled in our new home with new insurance, in a new place, with (thankfully) lots of more options for support and help for DS and us as we navigate through this- that's when we'll get some answers I guess, and learn some ways to manage.

 

That's really interesting that with twins you only have one that is on the spectrum- I guess they are not identical? It must have been strange to see them develop quite differently when they were the exact same age in the same environment. It's interesting.

 

Yes, DH is also DS's dad. I stumbled upon and read this wonderful and truly fascinating article recently

 

 http://www.larry-arnold.net/Neurodiversity/Mission/disability.htm 

 

called "Is Asperger's syndrome/High-Functioning Autism necessarily a disability?" and it mentioned the likelihood of family members also being on the spectrum or similar. What led me to start seriously thinking about DH and his dad was this "Parents of children with AS also show mild but significant deficits on an adult folk psychology task, mirroring the deficit in folk psychology seen in patients with AS/HFA . This is assumed to reflect genetic factors, since AS/HFA appear to have a strong heritable component . On the basis of this model, one should also expect that parents of children with autism or AS to be over-represented in occupations in which possession of superior folk physics is an advantage, whilst a deficit in folk psychology would not necessarily be a disadvantage. The paradigm occupation for such a cognitive profile is engineering.

A recent study of 1000 families found that fathers and grandfathers (patri- and matrilineal) of children with autism or AS were more than twice as likely to work in the field of engineering, compared to control groups . Indeed, 28.4% of children with autism or AS had at least one relative (father and/or grandfather) who was an engineer. Related evidence comes from a survey of students at Cambridge University, studying either sciences (physics, engineering, or maths) or humanities (English or French literature). 

It also says something about ASD people working in linguistics as well. DH is a linguist and his dad is an engineer, great-grandpa of DS also an engineer. And they all have glaring traits common in typical Asperger's. DH also took some kind of test online that had him come up as having Asperger's too. His reaction was mixed but mostly relief and happiness at understanding why he struggles with things. He also looks back at his childhood a bit sourly because he had a tough time and was put in special ed although he had IQ tests that put him well within genius range. And his mother was a special ed teacher! She wasn't helpful to say the least. But he's really motivated to help DS and it's kind of nice the way he notices DS's systems of doing things and says "he's just like me!" 

This is what is making me want to have another child no matter what. My husband is so great- I'd love it if DS was just like him but would be so sad if he had the same difficult childhood. I think we have really decided to go ahead and have another baby.

 

Thanks again for your thoughts. They were helpful to me. Still muddling. redface.gif 

Oh- I also just ordered a book and DVD from Hanen after reading reviews- More Than Words, it's called. I hope this will be something that helps. 


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#4 of 13 Old 06-28-2012, 04:59 AM
 
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I can relate to a lot of your post. My DD is  15 and has Asperger's. She is very high functioning and preparing for college, yet there are things that are very challenging that come easily to most people. I suspect my husband is also on the spectrum. He is a brilliant engineer and an executive at an Aerospace firm.

 

There have been times with my DD when it was really hard to figure out what was going on --- if she was delayed, just odd, or on the spectrum. Her first eval was when she was 3, and they went with "autism like behaviors" rather than a label of autism. During childhood, some days it seemed like she was on the spectrum, but other days not on the spectrum. None the less, there are enough things that she deeply struggles with (such as regular school and social interaction) that at this point, it seems very clear.

 

The difficult choice of whether or not to have more children isn't one that I faced. My kids are only a year and a half apart, so I had already had a second child when we realized that first child was developing atypically. Our younger DD is extremely social, gifted, and even a little athletic. She is one of those lucky people for whom most things comes easily and is usually surrounded by really nice kids. (And she is currently planning on majoring in engineering in college orngtongue.gif)

 

Having a younger sibling for whom social things comes easily has been VERY helpful to my older DD. It's  given her more opportunities to practicing interacting with others -- both with her sister and with her sister's friends. It's given her an opening to social groups that she wouldn't have figured out on her own. One year, it guaranteed her someone to sit with at lunch at school.

 

But there have been many times when I have felt overwhelmed trying to meet the very different needs of my kids. My older DD takes a lot of my time and energy, and I often feel like my younger DD gets the short end of the stick. Work is my husband's "special interest," and he is gone a lot. There have been times when things were VERY rough for my older DD and I've felt at my wits end, and my husband has said that she is just like he was at that age, and I feel resentful that he never told me about any this before we had kids together. bag.gif  At times, I have found it painful to watch my younger child pass her sister in skills. Currently, it appears that the best path for my older DD will be community college (she gets easily overwhelmed and needs a lot of support from us), but our younger DD will apply to schools and will most likely have a chance at a selective admissions college. She may leave home first. And figuring how to encourage them both and honor the things that are right for them is awkward.


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#5 of 13 Old 06-28-2012, 07:08 AM
 
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I can relate to so much of what you posted.  My son is now 7 and we went through the whole "well maybe its not ASD, maybe he's just developing differently" stuff with his pediatrician when he was 2.  At 3, it became obvious- hand-flapping, preoccupation and obsession with certain toys, certain ways of doing things, he couldn't tolerate loud or crowded places, meltdowns over everything, and still wasn't talking.  Looking back I really get upset with Dr.s take the whole "wait and see" approach- there is never any harm in getting early intervention therapies if there is a delay noted- if the kid turns out to be not on the spectrum and a-ok, well ok they have had some extra developmental "tutoring", no harm done.  If, however, the child is on the spectrum or delayed at all for any reason and they are not getting services, then the child not getting that critical early intervention is a huge loss.  Our journey went like this- I asked the ped about what to do because as a mental health professional, I knew it was autism.  So she referred us to Babies Can't Wait (GA's birth-3 early intervention therapy program, every state has one, just called something different) and I thought they would be able to give me a diagnosis.  No, while he was on their waiting list I should have already gotten him on a waiting list for the autism center for a diagnosis.  I also should have checked out Early Intervention Preschools- we have a great one here that my son eventually went to.  Anyway, it is a confusing mess at first, don't feel alone in that.  Getting therapy is most important, especially if the child has communication/speech deficits. Anyway, because of our journey and of working with special needs kids- I am a big advocate against the wait and see approach.  But, that is probably because of the initial severity of my son's delays and I have been able to watch him thrive and become happy through the skills he has learned in therapies.  

 

On the topic of a second child, here is my journey and advice:

 

This link was so powerful and helped me not only in my thoughts about having another child, but also in how I look at my son: http://www.stuartduncan.name/autism/the-... 

I am the mother of a 7 year old son who has classic autism. He is highly verbal (although didn't speak even short sentences or phrases until he was 4), intelligent, and the most loving (although stubborn and intense at times) soul I have ever met. I found out I was pregnant with my second son when my oldest was in the diagnosis process and he was an oops! (I mean surprise lol) baby. I had unspoken pressure to abort from various sources but decided to go with faith instead of fear. My youngest son is now 4 years old. He has been the most effective therapist my oldest has ever had. He makes sure his brother doesn't do unsafe things, get lost, etc. (of course I am there watching and don't force him into that role, but I love seeing his natural care and concern for his brother). They are like twins in many ways because my youngest is actually intellectually gifted and is about 3 years ahead. He taught my oldest so many important lessons that only a sibling can teach. He wouldn't allow him to go into his own little world, he is always asking him to play or showing him cool things he has found. My youngest has some sensory and emotional challenges himself and requires more attention from me than his brother, but there is such magic that goes on between the two of them as siblings in the way they play, fight (no worries about my oldest being unable to defend himself from bullies, his little brother is forcing him to learn self defense lol), and accept each other's differences. I am SO happy that my oldest will have someone to look after him and help him in life after my husband and I are dead and gone. 
With my youngest, during his pregnancy I did focus heavily on nutrition, moderate exercise, avoiding toxic chemicals (no dying my hair, I even bought organic shampoo, deodorant, body wash, and dish soap!), avoided all medications, and saw a naturopath doctor for a specific vitamin and mineral supplement protocol to give him the best chance of avoiding biomedical reasons for autism. He was a stronger, more robust baby so I believe that had a lot to do with it. 
Whatever you decide, I believe it should come from a place of love, hope, and faith, not fear.


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#6 of 13 Old 06-28-2012, 05:41 PM
 
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Many hugs!  My ds1 is now 13 and so much of what you say makes me remember the struggles in the beginning.  Was he, wasn't he, was he?!  It was all so confusing.  Now we know, he is on the spectrum.  High functioning in some ways, but he struggles with social things constantly.   We've had some serious struggles over the years.  Some that have broken my heart, but so many joys too!  He just won the spirit award for his middle school! 

 

When he was 18 months old, I was pregnant with ds2.  I remember thinking, 'OMG, what was I thinking?"  But now I know that even moms with neurotypical kids, often go through the same doubts when they are planning on having another child.  'Can I handle more than one?  What if there is something wrong with my next baby?  Can I handle that?'  In the long run, I'd say, follow your heart.  You'll handle whatever comes your way.  hug.gif   


 
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#7 of 13 Old 06-28-2012, 11:38 PM
 
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I went back and forth so much over the years too.  Ds had EI beginning at age 2 for speech delays, but we and the practitioners waffled for years whether to go ahead and get the Asperger's dx.  In February at age 7 we finally went and got the Dx of Asperger's.  Dh has many characteristics from the spectrum (eats the same lunch every day, groceries bought from the same store at the same time on the same day of the week, etc,) and his brother has classic autism complete with limited verbal communication and rocking and extreme need for routine.
 

Kids are always learning new skills and growing, thank goodness, even socially.  But when you compare your kiddo to his peers, that's when the differences become obvious.  Ds also has a neurotypical younger brother, and as they get older, I feel less crazy and less guilty that somehow I've created this label.  Dh is who he is, and acnowledging that he has Asperger's has been an important step towards really working on his social needs and his sensory needs, etc, so that he can function happily in the world.

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#8 of 13 Old 07-01-2012, 12:07 AM - Thread Starter
 
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It has been really helpful and comforting for me to read all of your advice and experiences.

I do think  dh and I are beginning to accept the realities of DS's ASD.

Now we are going back and forth on whether to TTC- we were all for it... until the past couple of days when DS has been having violent night wakings and tantrums all day because he is so tired from waking at night. His sleep problems are probably the hardest thing for us right now. Even talking to other parents with terrible sleepers, his sleep issues are so much more extreme and nothing we do has any effect- I can't help but attribute it to ASD because I've never heard of a NT kid who sleeps (or doesn't sleep) like DS. I know we are new to the ASD scene and DS's symptoms may evolve, change, worsen- but for me, right now, it's the sleep issues that truly scare me about the next kid. Sometimes it feels like we just can't go on with the kind of sleep we are getting around here. And to think about doing it all again with another one! yikes...

 

Anyway. Thanks again. This journey is a bit terrifying to start out on so it's nice to have a place like this.


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#9 of 13 Old 07-01-2012, 11:31 AM
 
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My son is a horrible sleeper and it does affect his daytime. If you want any been there done that on the sleep issues you might find a lot of help here there.

The acceptance thing, for most of us, is very much a process. You'll probably go back and forth a lot. Realize that's very, very normal!

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#10 of 13 Old 07-01-2012, 11:51 AM
 
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Quote:

Originally Posted by expat-mama View Post

 

DS's symptoms may evolve, change, worsen- but for me, right now, it's the sleep issues that truly scare me about the next kid. Sometimes it feels like we just can't go on with the kind of sleep we are getting around here.

 

 

hug2.gif  My DD has gone through very tough phases, and fairly easy phases. I really wish I could give you some sort of pattern so you would know what to expect, but I don't know if one really exist. Overall, the toddler phase and adolescence have been the worse (as they are for many kids) but the stuff with her was really off the charts. There have been ups and downs in the other periods, but reasonable,  do-able downs.


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#11 of 13 Old 07-01-2012, 12:33 PM
 
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Ive been where you are too. I've gone back and forth since my four year old was 16 months old wondering if he was on the spectrum. We still don't know. Ive worked in EI myself but even so I just don't know. There are days and weeks and months when I'm sure he is on the spectrum and then days and weeks and months when I'm sure he's not. And then there is that punch in the gut feeling you have when you see NT kids doing something so completely "normal" and you realize how different your kiddo really is. I know what you're talking about.

I'm finally coming to a place where I'm starting to realize that there are no guarantees with any child regardless of diagnosis. Because ds is quirky doesn't automatically mean my worst fears for him will come to pass just like I can't be promised that my seemingly NT child is going to have a smooth and easy road in life.

On the topic of siblings, I had the same fears. DS1 still sleeps poorly. You realize how bad it is when your 3.5 year old is waking up your newborn in the middle of the night instead of the other way around. Ds1 also requires a ton of time both in terms of therapy and getting services, etc to just the day to day stuff. At four he has motor planning issues that make it hard for him to do things like get dressed without a lot of help and he frequently is tantruming or needing down time, help with his sensory needs, etc. he is 10 times as much work even now as my seven month old. But, having another child has been good for all of us. My baby is so interested in my four year old and they can be really sweet with each other. My four year old is learning some tough lessons on patience, sharing mom, etc that are really good for him. It's hard but I know it is a good thing for him not to get every single little thing right now. Even though ds2 is a baby, I feel like the interactions the boys have are positive and helpful to ds1 especially. Somehow you make it work. DH and I trade off sleeping in on weekends etc and I'm still tired. But I truly wouldn't change a thing. I think a sibling has been a huge gift to ds1.

It's been good for me too. There is that unspoken accusation from family and friends sometimes that we created ds1s issues. That if we had just let him CIO he would be sleeping now. Or if we had been less indulgent (read: meeting his extremely high needs) he would be able to xyz. Ds2 has disproven that theory. I LOVE saying "no! We have done the same thing with this baby. He just likes to sleep." I knew I wasn't responsible for ds's needs before, but I can't tell you what a weight off my shoulders it is to be able to see ds2 and really know and believe in my heart that my kids are who they are, and I'm just here trying to mother them in the best way I can. But I didn't cause ds's struggles with speech or sleep or sensory issues.
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#12 of 13 Old 07-02-2012, 08:34 AM
 
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Re: Sleep Issues:  Yes, I remember the night terrors, frequent wakings, difficulty getting to sleep, etc. that went on until we 1) started adding Epsom salts with a few drops of lavender essential oil to his nightly bath right before bed (the magnesium is really calming for the nervous system and detoxing) and 2) started working with a naturopath and honestly that is my best advice.  Work with a naturopath or try some homeopathic remedies from the health food store if you can't afford a naturopath.  We saw huge improvements in sleep and speech when we started ds's supplement protocol.  But the Epsom salt baths with lavender essential oil in his bath alone showed some results.  Luckily, ds gradually outgrew all of his sleep issues, now that 7, the only issue he has is getting his mind to turn off to go to sleep, but we give him theanine and 5-htp supplements and that has helped the insomnia too.   


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#13 of 13 Old 07-02-2012, 03:49 PM
 
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My oldest has HFA/Asperger's and we had our second child when he was 18 months and the 3rd at 4 years.  We had no idea there was an issue at 18 months, and at four years he just seemed extremely difficult to transition and had a tic disorder.  Anyhow, while sometimes I had a low amount of time for my middle child, she has turned out to be the most terrific young person, great in school and sports and a good friend, too.  The teachers say that she is a real leader when it comes to being helpful to the other kids and they get her to work alongside some of the students who are struggling.  She's both patient but tough, and really stands up for her needs.  While some of her life has been rougher because of having a sibling on the spectrum, overall I think she's become such a capable person because of the experience of living with her brother.  They are very close friends and share interests together.

 

The youngest child had some special needs himself and that was quite a struggle.  He had some significant speech delays and auditory processing difficulties, and while he is now caught up to being within the average range, there is nothing second nature about language for him.  My son on the spectrum needs very specific language to get some ideas in conversation, and my youngest has a very hard time finding accurate words.  We had a hard time juggling time between the boys when there was more intensive therapy. 

 

No matter what, I think most people make what feels right work, and if you make the decision to have a second child, some way it will work out simply because you will have to make it work out.
 


Busy keeping up with three children and an awful lot of chickens!

FarmerBeth is offline  
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