New and dreading the dx ...

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Registered: 05-30-2005
New and dreading the dx ...
8
Mon, 05-30-2005 - 2:33pm

Hi everyone. I've been lurking for a few weeks now and hope you all can help provide me with a little desperately-needed perspective. My son, Calvin, turned 2 on May 7. He's a beautiful little boy with a big personality and lots of energy. He loves books, being outside and being with us. We discovered he had hypotonia when he was 6 months old because he wasn't putting any weight on his legs. We started with PT and over the course of the year he hit all his motor milestones and finally walked at 20 months. It seemed like a long time, but now looking back, it wasn't all that bad. I can now see he was making incremental progress each day. But our worries aren't over. Although he began babbling at 8 weeks (for real!) he still only has a half a dozen real words and the same number of signs. When he wants something he points and grunts. His receptive language skills seem to be good however. And now his occupational therapist says she's worried about his fleeting eye contact with her (although he's always made eye contact with us and our close friends and family) and his tendency to get "stuck" on things. What kind of things? Spinning the wheels on cars, opening and closing doors, going up and down stairs and a few others. We can distract him away from these things usually just by telling him to find something else to do, but if left to his own devices without us playing with him directly, these are his favorite activities. He does play with his toys, but not in an imaginative way and I'm not sure if ALL kids do this by two years of age. The bottom line is, we are going to see a developmental pediatrician in July and if she is at all conservative, we are going to get a dx of him somewhere on the spectrum. The spinning the wheels thing is the biggest sign as far as I can tell. So I am trying to prepare myself for this kick to the stomach. I know it's coming and in a way it will be a relief, but I can't keep myself from crying and crying and crying. Partly because I don't know what this means for him. He's my only child (the possibility of a second child has been tabled until we know what's going on with him) and I've only envisioned a typical childhood for him and now I don't know if that's even possible. I pictured school and friends and high school graduation and college ... I could go on and on. And now I feel like his speech and occupational therapists are tiptoeing around me and telling me what a great kid Calvin is ... like they're preparing me for the bad news we're about to hear. So what I need to hear is hope. Worst case scenario, we get this dx. Of course we get all the help and services going, but what can we hope for? I need to hear something good. Thank you.

Kellie & Calvin

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Registered: 10-03-2004
Mon, 05-30-2005 - 3:24pm

Dearest Kellie,

Well, we on this board have been where you are, but I want you to know that should you get the dx, the reality is not as bad as all that. Although it is tough and hard on us parents emotionally. BUT your child has language and interaction and pointing at age 2, so even if he is on the spectrum, those are good signs, big time. AND if you get the dx, he is only 2 and you will be so ahead of the game in terms of getting early intervention, which does make all the difference in the world.

The toughest part of the reality will be getting your ducks in a row to get every bit of help available and keep it, but it sounds like you already have help and that is key!!! The people you are working with can help you with finding other intervention, the fact that you have already gotten this much help this early gives you a huge leg up on other parents in knowing HOW to get the help.

My son (pdd-nos) is only (almost) 8, so I can't give you the great big picture, but my suspicions at this time is that he will big time be able to go to college (maybe online, maybe not), possibly hold down a job and be independent. At least, so far it would seem so. He has developed tons of language, his social difficulties are improving, he is able to communicate what is happening with him more and more, his episodic memory is improving, and he has loads of humor, joy and self-confidence. We have had him working very, very hard since we got his dx at age 3, with speech, OT, behavioral and psychotherapy, small groups and play therapy, even sports therapy, RDI and floortime. He is quite gifted academically, so he is lucky there. He is starting to play competitive sports (!) And he has lots of friends, most of them like him, but many NT (neurotypical) children as well. So, as far as I am concerned, at this point the future is very bright. I have the opportunity to compare him to other children that haven't had the amount of intervention he has had, and I say go for as much help as you deem necessary!

There are many great moms and specialists who post here, so these boards are just a great source of information and support and feedback. Ask away, read up, come visit often. Let us know about the dx. All help is good help, if there isn't a dx, great!, if there is, you can get to work with further interventions.

It is completely understandable that you are so frightened, but getting the eval is the very best thing you can do!!! Therefore you are being the bext mom possible. (((((HUGS)))) and take as good of care of yourself as you can.

BTW, we almost named our son Calvin. We were down to 2 choices, so we decided to see which one he looked more like at birth, and Malcolm he was!

yours,

Sara
ilovemalcolm

Avatar for cathby
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Registered: 05-16-2003
Mon, 05-30-2005 - 5:52pm

Hi Kellie,

Yes, your description of the "kick to the stomach" is a good one. But as you guessed, it's also a relief. I used to think that a PDD dx. would be the most awful thing in the world. But it's not. Really.

Calvin sounds like a wonderful little boy. And whatever dx. or whatever else, he is still your little Calvin. It doesn't take that away.

I know what you mean about the dreams being dashed. For some reason, I pictured my Jack (age 3.11 years) riding around in a convertible with a surfboard and lots of friends. I still haven't given up the hope (except I've decided that convertibles are too dangerous!) ;)

We have all been there. I know how it feels like you are alone, but all over the place are moms like you feeling the same things. Please don't give up hope. Calvin is SO young, you have that on your side. His brain is growing and changing every day and they more therapy he gets, the better able his brain will be to readjust and make newer and better connections. I just saw a college friend whose sister teaches kids on the spectrum and she was telling me that her sister says that so many of these kids grow up "indistinguishable" from the rest. True, it's a rough road (especially for us moms) but it is not a dead end. At all.

Calvin sounds like he has great skills -- good eye contact with some people, some words, good receptive language, the ability to sign (that's a form of communication too), etc. That all really is important.

My little bit of advice would be to stop the perseverative behavior (spinning wheels, etc.) when you see it. Just keep him moving on.

I have my good days and my bad days, but I put one foot in front of the other and try and be optimistic. I know it's hard, especially in the early days.

Take care,
Cathy

iVillage Member
Registered: 05-03-2005
Mon, 05-30-2005 - 8:42pm
Kellie,
Our daughter was recently dx'd with HFA (in pencil) through our school dist. I sort of kick myself now for not taking her for preschool screening at 3 instead of 4.5. I have learned that what is done can not be undone, so we live for today and tomorrow. First, be happy you are acting on this so early. If he is on the high functioning end of the spectrum, which is most likely the case, you can still hope for all those things! It took awhile for the "label" to sink in and then I cried. Then I was done and it was time to educate myself. She started school 5weeks ago and we have noticed a wonderful, almost eerie change in her already. I say eerie becuz this is not the same child that we have been tiptoeing around for the past 4.5 yrs.!! Make sure that you take advantage of any and all assistance available to you. I hope your school district is as wonderful as ours. Good luck and its only a label, which is some form of relief. It doesn't change your love for him, only helps it to grow.
Julie
iVillage Member
Registered: 02-24-2004
Tue, 05-31-2005 - 3:50pm

Hi Kellie!

Welcome to the board! Having a child on the spectrum has opened up a whole new world to me. I have 2 boys, my youngest was dx'd last April as high functioning autistic. It can be challenging to raise a child with autism, but it can be just a rewarding too. It's hard to be positive all the time, so don't worry if you find yourself crying.....we've all been there too! And we still have our moments!!

Early intervention is a huge contributor in how well your son flourishes. Nathan (6) has been in speech therapy for a yr and has made such great progress. Having a special needs child, helps me to appreciate the small things, all of his accomplishments (which might seem trivial to others) bring great excitment to our family.

Nathan used to grunt and scream when he was younger. He only had a handful of words and rarely used them. He didn't really start talking til age 3 (although that was with me working with him!). He has great eye contact with family and close friends, and has always been affectionate with us too. He's in a regular kindergarten class and doing well. He's a bit quirky, always will be, but that's what makes him who he is. He tends to learn some things slower than an NT child would, but then there are things he learns rather quickly. I've learned to be more patient, explain EVERYTHING in detail to him, and repeat things as often as he needs. He's a visual learner too, so if I can "show" him something....he picks it up much quicker. He also has a magnetic calendar in his room, which helps him to understand when and what we/he is doing from day to day.

Best of luck with your appt in July! Let us know how things go!

Michelle

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Registered: 10-18-2004
Wed, 06-01-2005 - 9:34pm

Kellie, your post really caught my eye because my asd son is hypotonic too and walked just shy of 22 months. He is 2.5 yrs of age right now. I remember an intervention worker noting his fleeting eye contact as he neared his 2nd birthday. Up until then his eye contact had been great and he was very sociable. In classic asd fashion he regressed in these areas and his language dropped off. We were officiallyd diagnosed 2 weeks ago.

Like yourself, my only concern for the longest time was they hypotonia. All I can say is in the little time we have been dealing with autism I have yet to meet two autistic children that are exactly the same. where they are at this stage is not predictive. I have walked the road and can tell you despite poor eye contact etc you will always feel connected to your son.

I realize it is frightening and the fact he is your only child is daunting with respect to future risks and family planning. I know this journey feels like the floor dropped out from under you. Every rule that applies to so called normal parenting completely changes.

You are perfectly justified to feel as you do, I know I had bouts of crying that just never seemed like they would stop. I finally had to be prescribed an anti depressant and it has helped tremendously, it doesn't take the issues away but does enable some better functioning and coping.

Calvin'stherapists do not know and that is why they seem to tip toe around you. They may have ideas or inclinations but in our case the diagnosis was made by a team with a developmental pediatrician/specialist. One person from any given discipline is not going to be able to say and nor do they want to. I believe they can get in a lot of trouble if they do as well.

Try to take one day at a time, the fact that Calvin is pointing is an awesome sign. In your post I see so much potential for Calvin.

You obviously love him very much and that is the most important thing. I know it is hard, you will survive and when you hear from others, you will see there are such variations between children and children doing things there parents never imagined.

Lots of love,

Jen
mom to Jason 2.5 ASD, hypotonia and Tyler 5

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Registered: 10-13-2004
Thu, 06-02-2005 - 3:15am

Yup, I've been where you are. Our son had dx of hypotonia, apraxia and then moderate autism.

I found that the autism dx set us free. No longer was I a considered 'neurotic' mother by friends and family because there were actually good reasons for my concerns. Once we had the dx, we were also able to learn the strategies to let us into his world.

I've also spent much time trying to learn about the world from an autistic point of view. (I rarely read anything written about having autism by a 'normal' person) And what I've learned is that autism is not a bad thing for those who have it. Many also say that they would not take a cure for autism if one was available. One of the biggest hurdles I've had is learning to accept the stimming and repetitive movements as part of his personality. It may look odd, but they calm and soothe him - and they don't hurt anyone - so why stop it?

Yes, I've had to let go of my dreams for what my son's life will entail, but I've also learned that he will build his own dreams and can still have a great life.

It's currently 5pm here and while many 8yo kids are out playing with friends, mine is sitting here beside me surfing the NASA website - but that's the way he is and that's OK. He also surfs for images and streaming media of car-washes...but is that really any weirder than DD looking for Barbie websites? LOL

Regarding having a second child, I don't regret having one for a moment. Because we have chosen to not to ABA, DD does not miss out on anything. Not only does she provide DS with much greater therapy than a professional ever could, but they are friends and love each other. Sure, she has to cope with the embarrassment that her brother causes with his lack of social understanding, but she's a great kid and we all support each other.

As mentioned above, we take a fairly light approach to therapy. We have never considered ABA because we believe that the intensiveness would damage our family dynamics. Likewise, even speech therapy can often take a back-seat to other family needs. But, despite never having done intense therapy and us skipping lots of speech therapy....he's making loads of progress.

Dress Up Games, Doll Makers and Cartoon Dolls @ The Doll Palace
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Registered: 05-30-2005
Fri, 06-03-2005 - 2:54pm

Thank you -- I actually want to thank everyone, but your response had the tone I was looking for. I need to calm down, but be realistic at the same time. A hard combination, I'm discovering. I still can't quite stop crying (it comes and goes) and I can't seem to stop watching him like a hawk wondering "Is that a sign? Is that?" But I will eventually. The next month will be the toughest, but I think once we get past this evaluation, Calvin and I will be on the road to recovery together. :-) Thank you so much.

Kellie & Calvin

iVillage Member
Registered: 02-24-2004
Sat, 06-04-2005 - 11:42am

Kellie,

I watch Nathan all the time too!! I think it's just to be expected. My eyes welt up in tears sometimes just watching him. Sometimes he'll do something or say something that just makes me sad. It's been a year now since his dx, but it still gets to me sometimes. I have gotten better though, I think it's just something that takes time.

Hugs,
Michelle