My son is autistic, and I just want to be his mama! - Mothering Forums

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#1 of 19 Old 12-10-2008, 01:20 AM - Thread Starter
 
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My son is 21 months, and we're pretty sure he's autistic. After quite a lot of thought, we went through an EI evaluation, because the idea of some outside ideas on ways to play and interact with him sounded like it might be helpful. I've also just read books on Floortime and RDI.

The thing is, I'm feeling utterly rebellious about turning our lives into one big therapy session, play or otherwise. I don't know if it's because it feels so darn intrusive, or because I'm a total introvert and being high energy engaging for hours a day just sounds exhausting, or because I kind of recoil at the idea of working so hard to "change" my son.

But we have largely parented on instinct, taking in outside ideas, using some, throwing most out. With DD (5yo), that seems to have worked fine, but she's the same introverted imaginator that I am, so intuition came easy. I think I share less of the same personality with my son, so intuition is a little harder with him. One thing I've found really helpful in the books I've been reading is to understand he craves more physical play, and he's loving that. So as far as books and therapists and EI can help me understand how to relate better with my son, I'm all for that.

But I struggle when it becomes about changing him. My son is wonderful. He's affectionate, although not in the ways many children are. He's happy. He's loved. I want to spend time on the floor playing with him and connecting and experiencing as much joy as possible. But the goals of therapy feel different for me - use all those things in order to mold and direct him. I want to be his mama, to just love him. I'm sure the two aren't as separate as they feel.

I'd be interested where other folks have ended up in thinking about this, and what you ended up doing in your family...

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#2 of 19 Old 12-10-2008, 02:38 AM
 
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We didn't do anything for the just the sake of doing it. We only did interventions that we felt he really needed in order for him to interact the way HE wants to. I put all my feelings aside about what I thought a child should be doing and focused on what was important to him. For us, that meant speech and OT, thats it.

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#3 of 19 Old 12-10-2008, 03:13 AM
 
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I don't believe that any child is cured, maybe that their symptoms remit but I don't think cure is accurate. Even children who do fall off the spectrum still have a lot of autistic traits.

Therapies like OT/Speech/ABA/TEACCH/RDI/DIR/etc should be focused on teaching the child skills they will need to succeed in life. Hopefully with therapeutic and educational support the child can pursue academic goals, get and maintain a job, have meaningful relationships, and be happy as they grow up and grow old. I think the therapeutic services just help them get there. Of course, some children no matter what services they receive will always need intense professional support. That said, it's still about the quality of life they can have (like being able to care for personal hygiene, work in a sheltered workplace, live in the community, etc).

Kids with Down Syndrome also receive therapeutic services, although they obvious won't be cured the hope is that they will attain and maintain the highest level of possible functioning. I think that you can use a similar prism to look at services for kids with Autism.
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#4 of 19 Old 12-10-2008, 03:21 AM
 
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I understand how you feel. I resisted a diagnosis and therapy fro my ds at that young of an age because I wanted him to be a kid for a little. He did enter a special needs preschool at 3.75 and was diagnosed at 4. My youngest was diagnosed at 3 but the only therapy he gets is the residual stuff from his brother's in home therapy. His needs aren't as great though. I think I came to a good compromise in ds1's care and education. He is currently thriving in 1st grade albeit in a special ed classroom.

Unfortunately your life will not be the same as it was. There will be things that you will have to work on that you wouldn't normally do. It doesn't have to consume your life but your life won't be the same. I think you do have a bit of an advantage because you seem to want to accept him as he is and that is a huge thing.

Misty, mama to my nurslings William(11/4/02) and Parker(7/13/04).
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#5 of 19 Old 12-10-2008, 04:28 AM - Thread Starter
 
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Thanks mamas.

Right now, DS's autism doesn't seem to have the sensory or motor challenges that would make other therapies useful. He's not talking, but he's little yet, that doesn't concern me at all. Most people who see him for a short time wouldn't peg him as autistic. But on the social/relating stuff, he's pretty classic.

At this point, I guess the hard part is to figure out what he "needs". I look at him and wonder if he's just taking his own path and will end up at a happy, fulfilling adult place that works with who he is - or if he has some issues that a little help now would really make a big difference later on.

Anyhow, it's good to hear what you've done - sounds like stepping into this very gently isn't as strange an approach as I felt after reading all the "intervene NOW" stuff . Thank you!

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#6 of 19 Old 12-10-2008, 04:46 AM
 
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I think I really know what you are talking about.
I knew my 2nd dd was different from birth when I was wondering whether she was blind or deaf because she wouldn't make eye contact or respond to any voices.
I love everything about her, her capacity for empathy and how she goes out of her own special way to "help" (which occasionally means stacking diapers on top of her sleeping baby sister) I wouldnt change a thing about her and I am really enjoying discovering the world though her very unique perspective.

My intent with my special needs daughter is exactly the same as for my other kids; that I want to help support them in being and doing and experiencing whatever it is that they are here on earth to choose to create of themselves. I have no expectation of outcome, I just offer unconditional love and support in whatever path they choose and be the best mama I can be.
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#7 of 19 Old 12-10-2008, 04:58 AM - Thread Starter
 
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My intent with my special needs daughter is exactly the same as for my other kids; that I want to help support them in being and doing and experiencing whatever it is that they are here on earth to choose to create of themselves.
That is soooo exactly it, thank you for articulating so clearly what I've been feeling. I don't want to have to be some alien kind of parent because I have an autistic son. I want to follow his lead, just like with my DD, without assuming his path is somehow heading in a broken direction.

He just doesn't feel broken to me. Different, yes. But not broken. I know some people feel strongly that environmental factors damaged their child, but my son was so obviously born autistic. Neither of my children are very "typical", and I love their unique beings. Time to going back to trusting my son to let us know what he needs .

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#8 of 19 Old 12-10-2008, 09:32 AM
 
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I chose lots of therapies for my son b/c he was so miserable. His sensory needs are extensive and he spent most of his days crying, headbanging, seeking seeking seeking, it just wasn't fair to not offer it. Once we started OT and addressed his sensory needs he was much happier. For me it's about my child being happy and growing up having fun and learning about the world around him. I chose the therapies that best addressed those things, and we've continued with those as he's gotten older and now started preschool.
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#9 of 19 Old 12-10-2008, 02:59 PM
 
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I respect your decision to do what feels right to you with your child. I think you can trust yourself to make the best decisions. If things are going along well now and you want to just be with him do that. If you change your mind later you can make a different decision. There isn't a window of opportunity where the brain slams shut and can't learn.

You wanted to know what others are doing/how other see this I think. My son is almost 5. We've been doing RDI with my son for 2.5 years and did floortime prior to that. With both of those it seems to be a really good way to interact with my son and to help him make discoveries which make the outside world easier to navigate. He's got the tools to do that which don't come naturally to him. We integrate it into life and living so it doesn't feel like one big therapy session to me...it's more that it is a certain (more effective, more mindful, more engaging for him) way to interact.


Anyway, my point is that these types of therapies--any type of therapies--don't change a child. My son has made great progress and tons of discoveries but he's still the same kid with the same strengths and personality. That will never change. The facts are that autism does bring with it certain challenges. It makes certain things more difficult--the degree of difficulty depending on the child. So while my son has great strengths he also has weak areas related to his autism that I do think will limit him. My hope for Andrew is he'll have the tools to do whatever he is drawn to do. The areas he's weak in will be strong enough to not hold him back. I want the same for my typically developing child.

As far as just being a parent I do understand you are seeing therapy vs. parenting. To me a big part of parenting is guiding our children. Typically developing children make that job easier. They naturally seek and follow us as guides. So among other things they do more watching of us, involving themselves, imitating, asking why/getting into our heads to discover our thinking. I believe my spectrum son deserves to have that same opportunity and information.

I'm not fundamentally changing my son. I am just helping him learn and make new connections. I'm his parent and guide just like I am for his brother. I just have to work a little more "mindfully" with Andrew to be a good guide. RDI has made me more mindful in general which has been good for my typically developing child too.

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#10 of 19 Old 12-10-2008, 06:11 PM - Thread Starter
 
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I chose lots of therapies for my son b/c he was so miserable. His sensory needs are extensive and he spent most of his days crying, headbanging, seeking seeking seeking, it just wasn't fair to not offer it. Once we started OT and addressed his sensory needs he was much happier.
Aw, that makes my heart ache... You're right, that would send me running for all the help I could get for my child. My DD actually needed a lot more help as a toddler to find her balance - she was very sensitive to lots of things. DS is just a pretty happy kid.

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There isn't a window of opportunity where the brain slams shut and can't learn.
...We integrate it into life and living so it doesn't feel like one big therapy session to me...it's more that it is a certain (more effective, more mindful, more engaging for him) way to interact.
Thanks, that's a really helpful perspective. I'm re-reading the therapy books looking for small ideas to include, instead of a big program. There are definitely things that engage my son that I had never thought to try before. This morning he grabbed my legs and dragged me over to the bed where we have been playing - I've been swinging and throwing him on to a pile of covers - and made it really clear I should do it again (the last time we did it was yesterday, so that was pretty cool). I, however, need to grow bigger muscles ...

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#11 of 19 Old 12-11-2008, 02:02 PM
 
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My advice is to try not to think of the activites you are doing as therapy, or think of what you are doing as trying to "change" him. He is who he is. And I'm sure he is wonderful and you love him just the way he is. The activities that you can do with him don't have to be these elaborate planned out things, sensory therapy can be as simple (and fun) as just taking a walk outside and letting him feel different textures (sand,grass,dirt,ect.), you can interact with him just as you would any other child,but address his need for special attention areas, like function of objects, my son and i play hide and seek with flash cards that have object words on them,i place the cards on objects around the house and ask him "what do we brush our teeth with?" and he goes to the bathroom and finfd the card on his toothbrush, just simple games can have a big role in relating function of objects,so keep trying, keep researching and keep doing a great job
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#12 of 19 Old 12-12-2008, 12:26 PM
 
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OP, I could have written your post by switching the word autism with down syndrome.

My DS is 14 months and as of now we have not sought any EI for him. Why? For the same reasons you have expressed. DS has been thriving and I have not felt any need to seek outside help.

DS is lucky to have been born to parents that are both teachers. I have a degree and extensive experience in early childhood and a minor (and minor experience) in special ed. I feel quite qualified and knowledgeable about typical development and the benefits of EI. My sister has extensive experience working with people with special needs (down syndrome specifically) and a masters in special ed. She has been very helpful as a sounding board for me to be sure that I am not somehow depriving my son of help that he needs.

We also live in the same town as my husband's cousin that has down syndrome (she is 22). I talk with her mom all the time. She has been a wonderful resource.

I have struggled with the "EI is critical" and "the sooner the better" messages that my training has ingrained in me. My mother instincts are completely opposite.

Instead I have chosen to further educate myself on what therapy has to offer (there are some excellent resources out there!) and to implement this stuff on my own. I have sought medical help were needed and rejected the idea that DS needs more check ups, more testing, more whatever just because he has down syndrome. I participate in a support group so I can share knowledge and experiences with other parents. It also helps for me to see what EI is doing for other families and to constantly reevaluate our needs.

I have found my IRL experiences to be full of pressure to start EI and full of people that misunderstand where I am coming from. My choice to NOT seek outside help at the moment is not one of fear and ignorance, but a well thought out choice.

One last thought, I find that because DS is healthy and hitting his milestones appropriately with out outside help that I am on the fringe of the local down syndrome community. Add to that our family's choice to home birth, home school, stance on vaccinations, and AP parenting practices and you might understand why people just don't get us.

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#13 of 19 Old 12-12-2008, 02:21 PM
 
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Our therapy is just play He adores our therapist, probably one of the top 5 people he is attached to She walks in the door and he squeals, runs to get Play-Doh or a book and plop himself on her lap. She is my friend as well.

While I'm not a people person either, and it's been stressful having so many people involved in Elliott's life, it's also been great having caring people who understand his diagnosis and also understand him as the individual.

All of the parenting/discipline advice I receive (cause that's hard to separate from therapy at 2 1/2) is right in line with the way we parent. Therapists are looking for ways to teach, not punish. So we get tools that we can use at home. I guess one of my problems as a parent - that I have been aware of since day 1 - is that my mothering instinct tends to be a little vague. I know what I'm aiming for but get a little spacey when it comes to specifics. Therapy has filled in the blanks for me (well, some of them.)

We have rejected some of our service coordinator's recommendations and suggested ideas of our own. We, as parents, call the shots 100% of the time.
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#14 of 19 Old 12-12-2008, 02:51 PM
 
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We are in the same boat, trying to figure out what to do next for our autistic 3.5 year old.

I have to make this fast because I have to tidy -- mother in law is coming! But basically we sometimes swing back and forth between feeling like she is frustrated and we are doing her a disservice not putting her in a special preschool, because it is so hard to meet everyone's needs, but then after that "darkest before the dawn" moment we see her making more eye contact, communicating better, seeming to be happier, etc. Then we have our bad days and we wonder if we're doing the right thing in sort of toodling along with our lives almost as if she was not autistic (besides taking her sensory issues and anxiety somewhat into account).

It's so hard. We saw a specialist last week who really wants her vaccinated and in preschool. Or regular ped wants her vaccinated too.

Homeschooling is definitely working great for my older daughter, 5 and NT, but she isn't getting as much one-on-one time or attention as she needs from me because I am running around a bit more than I would be with a typical 3 year old.

So then I think wouldn't it be nice if V could go to a nice little waldorf-y daycare/preschool so she wasn't watching so many videos, and so C and I could spend time together without stress/interruptions?

Maybe V would progress faster with some formal therapies, maybe not. She is definitely behind her peers. But just when we make our minds up to do the IEP she has a mini breakthrough and we wonder all over again what to do.

Definitely subbing. As an AP mama, an unschooler, and a "let kids be kids" and let kids be themselves kind of person, it is hard to find the patience to just keep going the way we are going some days, but it sure feels right most of the time. Hope that made any sense at all, I am typing super fast, not going to have time to re-read/edit and haven't had anything but coffee so far!

-Vijay
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#15 of 19 Old 12-12-2008, 04:06 PM
 
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I was lucky in that my step son came to me at 3 years old and I had no feelings of guilt or sadness that he was autistic and I just wanted to help him. I know if it had been my child that I gave birth to and had since birth, it would have been much more difficult.

My experience though was this. While I wanted to bond and be his mommy, I also wanted to look at the long term benefits. I wanted to raise a child that would be able to take care of himself on day and not be dependant on me forever. Therapies became very important for us, but honestly, I did everything myself. I could really gage what was working for him and what wasn't. I had to be the bad guy sometimes and he was NOT always happy with me. It was a rough 2 years when this started, but now, at 9, it is like night and day. He still has autistic traits, someone who KNOWS him can still see some things, but really, it has made life altering changes for him. I see hope in his future now. And I am speaking ONLY about MY child. What works for some families doesn't for others, but I know the therapies can be scary, but there is a reason why they have been scientifically proven to work, because in general they do. It just depends on what your long term goals are.
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#16 of 19 Old 12-14-2008, 03:59 AM - Thread Starter
 
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One last thought, I find that because DS is healthy and hitting his milestones appropriately with out outside help that I am on the fringe of the local down syndrome community. Add to that our family's choice to home birth, home school, stance on vaccinations, and AP parenting practices and you might understand why people just don't get us.
Yeah, that would be us, except we live in Eugene now where all that is perfectly normal ... I am finding though that most people who believe their 20 month old is autistic have kids with pretty severe symptoms. If DS were unhappy or struggling, then I think intervention would be really appropriate. But he's not...

I think part of what we will need to do is realize we can take some of what is offered and not all. We would like more input on how to encourage him to engage and interact - the ideas I'm trying from my reading are working really well, and he's loving it. What I don't want is the full IEFP we were sent after our evaluation that wants him to eat applesauce and learn to wait in line and choose between toy A and toy B after looking carefully at each of them. About those I could care less at the moment.

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Originally Posted by VijayOwens View Post
We are in the same boat, trying to figure out what to do next for our autistic 3.5 year old...

Definitely subbing. As an AP mama, an unschooler, and a "let kids be kids" and let kids be themselves kind of person, it is hard to find the patience to just keep going the way we are going some days, but it sure feels right most of the time.
-Vijay
Yup . We have very similar conversations at our house! What I don't want is for my happy toddler to miss out on learning things that will help him be a happy 3-4-5 year old, and it's hard to guess what those are...

I think I reacted strongly to some of the therapy stuff I read because it basically said you need to be your child's guide because your ASD child clearly shouldn't be leading... Ugh. So. Not. The. Way. We. Parent. But maybe necessary on occasion (like we don't let DD subsist on a diet of yogurt and chocolate either...)

Thanks for all the input, mamas - it is very good to hear others have tangled with this. I really appreciate all your perspectives.

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#17 of 19 Old 12-14-2008, 04:11 AM
 
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therapy burnout is common, for both SN kids and their parents. finding a balance is obviously key, though that may take time. for me, i look for opportunities to therapise and times to just play. totally normal, IMO.
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#18 of 19 Old 12-14-2008, 11:53 AM
 
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OP, My situation is different, but we are just starting RDI with my DS. It might be something for you to look into. We just have one meeting a week with a consultant (and he works with us, not our son). Other than that, we just interact with our son. We are learning new ways of doing that and are learning how to spotlight specific pieces of the interaction, but I feel great about how natural it is.
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#19 of 19 Old 12-22-2008, 07:56 PM
 
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mamafish9,
I live in Eugene too!
Anyway what we have done with my 3 1/2 year old Autistic son is have therapy sessions where the therapist teach me things I can do in our daily life to help give my son the skills he will need later in life. That way I can integrate these things into our own schedule without having meetings everyday. I do find that therapy certainly does have its place. I don't look at it as changing my son because I love him the way he is, but instead teaching me how to properly parent him. He simply learns differently and I need to know how to get across to him because he will be an adult someday and I want to make sure he is a functioning part of society. Right now we only meet with an autism specialist 2x a month. Once with my son & I and once when my son is in school I met with her by myself to go over what is working and what we need help on. Other than that he gets speech once a week at his school.

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