What was your reaction to your child's diagnosis?

[Celia]

My son was diagnosed as PDD-NOS on Friday. He fits most of the criteria for Asperger's but was speech delayed, and not really obsessive about anything. Most of his symptoms are on the milder side, which I guess is why we ended up not getting this diagnosed until now (he's nearly 7).

 

So I guess I've known something was different about him since birth. He was an extremely difficult infant and toddler. And since reading about Asperger's last summer, I've wondered if it was possible, so we started looking into it. But, when it came to actually getting the psych-ed eval done, I really thought that we would find that he was just a bit quirky, and a late bloomer socially. I actually expected the doctor to say something about us wasting her time. I didn't expect a diagnosis, but thought checking this out to make sure was the prudent thing to do.

 

I was surprised when she said he was definately on the spectrum. And now I'm concerned for my younger ds as well because he's speech delayed too (although quite a bit different from my older son in other ways).

 

It's only been a couple days since the diagnosis, but I'm really struggling. Maybe I shouldn't be. He's still the same sweet, amazing child. This diagnosis has opened the doors to therapy we otherwise couldn't have afforded, and insight into his behaviour we otherwise wouldn't have. All the times when I was losing my mind trying to deal with him, and thinking that something was wrong, it's true. I wasn't crazy. There was something wrong.

 

Something's wrong with my child. It breaks my heart to know this. This isn't a phase of childhood he's going to grow out of. He's going to struggle, and his little heart is going to ache with the rejection he gets from others who find him odd.

 

Life is hard enough, even for those who develop normally, nevermind having to deal with extra challanges.

 

I'm scared for my younger son. He's 2 years and 1.5months old, and uses about 3 words on a semi-regular basis. He doesn't show any signs of ASD other than that, as far as I can tell, but I guess he could develop them.

 

Where else could this lead to for my 6yr old? Is where he is now as bad as it gets, or could we be in for more suprises?

 

I've only told a few people, but most of the responses just leave me feeling so alone in this. Some examples:

 

1) Oh no, I was worried for both your boys. Well, at least your daughter is normal.

2) What difference does it make? He's a nice kid. He's doing fine.

3) I probably have that too, they just didn't have a name for it when I was younger.

4) Did the doctor say you should stop homeschooling so he can go to school for socialization?

5) That's great! Now you can get the resources he needs! You should be happy about this!

6) Well, my kids like your boy. He's so nice. All the kids know he's a little strange. Kids pick up on these things easily, but everyone likes him.

 

Now, none of these were said to be nasty. Most were compassionate people who just don't know quite what to say. All were friends. I just want to hide under a rock. To boot, I can't tell if I have PMS skewing my emotions as my cycle went all wonky from stress (which I wouldn't mention, but I think that might be a significant issue in my reaction!).

 

Please tell me about your reaction when your child was diagnosed. I need to feel like my tears aren't rediculous.

[wy_kid_wrangler04]

We just got the "official" diagnosis with ds 6 1/2 Thursday, though they told us most of their findings before as they found out. We did all the evals (have been since the beginning of Feb) so I guess maybe that is what helps me because we have been getting little bits since then. Ds is Autistic (scored a 70 on the ADOS so if high functioning) He has tourettes, severe visual/spatial delays, eye tracking problems, sensory processing and integration disorders and has low tone. I actually did very well with it all except once when I was going to talk to some friends about it. Then tears started coming uncontrollably (they are starting now, this is only the 2nd time) I actually was ok when all the diagnoses were made "official" because now I can know how to better serve him. He has low IQ. I also found that out Thursday. How does a homeschool mom NOT blame herself for that? I am now looking into what curriculum to get ds to help wit his learning styles. Through all this I found out that he has VERY good Verbal IQ (VIQ) and his Non Verbal IQ (NVIQ) is very, very low. Now I need to figure out how to work with that when everything (most everything) I was doing was VERY NVIQ. Take the times you need, then start working on what you can do to help your ds. Also check out Social Stories :001_smile:

 

:grouphug: To you. I found out 1 day before you so I am in the same situation. Tears will come (as they are now, 2nd time since finding out) then they will go... and they come again. Its hard finding out. Its going to be a long homeschool journey but so worth it! :grouphug:

 

 

For the record, my ds sound VERY VERY much like yours! Almost to a T :001_smile:

 

I have had reactions anywhere from "OH I am so sorry to hear that, if there is anything I can do let me know" To "So, he is still the same kid" Just expect a wide range of reactions but make sure you have worked through your thoughts on this before telling many people so their reactions do not sway your feelings. Personally the "I am so sorry if there is anything I can do please let me know" kinda bugged me. But that's just me ;)

Edited April 18, 2011 by wy_kid_wrangler04

[specialmama]

My boy has severe "classic" autism. I never cried. I never grieved. It was a huge relief to have a name for it. My dreams for him have changed somewhat, but I still thank God for the gift of him. He has taught me so much. Around the time of his dx, I wrote several poems, perhaps they could help you through this. I'm off to find them now... :grouphug:

[specialmama]

Precious in His Sight

 

You are precious in His sight,

A beauty to behold.

Known before you were formed,

More valuable than gold.

 

You are mommy’s little blessing,

A wonderful gift from above,

A taste of how the Lord sees us,

A glimpse of immeasurable love.

 

And oh! The road has bumps in it,

We knew something was wrong

When your precious eyes did not meet ours,

And you failed to hear our song.

 

Our dreams for you have changed somewhat,

But one thing stays the same.

We thank the Lord for the gift of you,

For the glory of His Name.

 

And though the days be hard, my son,

He’ll carry us along.

And one day all will be restored

And you’ll hear Heaven’s song.

 

Sleep tight my love, in your own little world,

Such a treasure to behold.

So precious in His sight you are,

More wonderful that gold.

 

By Karyn J. Papadatos

[specialmama]

Dreams

 

I had a dream I heard you speak

I listened with joy and I tried to keep

That voice in a jar, safe for all time

To treasure the words of this boy of mine.

I had a dream you looked up at me

And gazed in my eyes so lovingly.

The depth of that stare caused my soul to ache

And I captured that moment for my own heart’s sake.

So vivid, so real, but alas – just a dream.

Come morning light, it’s not as it seemed.

My heart yielded sorrow as I cried for my boy

Who may never speak or look up with joy.

But then in a dream, you took my hand

And gave me a moment to understand

That nestled in innocence beyond compare

Your world is fine and you’re happy there.

Yes, you are fine, but I will always keep

These images of you from when I sleep.

For life is not always as it seems

And hope always comes, as revealed in dreams.

 

By Karyn J. Papadatos

[MyHandsAreFull]

No, it's just tough. And it's an iterative process. It's not like you adjust and then move on and never grieve again. It ebbs and flows--you see progress and think maybe it will get better, but then there is some new hurdle and things get hard again. I think the worst of it was many people (otherwise kind and decent people) would say things like "well, it's not like it's cancer!" Other people frequently just don't understand in the least. What really helped me a lot was finding a local parent support group and attending their functions. They would often have activities where you could bring your kid with you (picnics or zoo trips and whatnot) and you could "let your hair down" and just talk to other parents in basically the same boat as you. We don't go much anymore for a variety of reasons but it really helped and we still keep in touch with several other parents who joined that group the same time we did.

[Celia]

Thanks so much for your replies. Karyn, your poetry was beautiful! I used to write poetry when I needed an outlet.... perhaps I should take that up again. Kid wrangler, it's nice to hear from someone who's nearly at the same place in this journey with a similar kiddo. I wish I could take you out for a cup of coffee!

 

Myhandsarefull, I was just mentioning to hubby that I think I need to find a support group, at least while I'm getting my head aroudn this. I'm going to see what's around.

[Joyofsixreboot]

My 15 yo has AS but wasn't dx until 8yo. That didn't really rock me. He has great math abilities and I think that somehow makes it ok. My dh would probably be on the spectrum somewhere too so it seemed so reasonable. I've been more upset with ds10 vision dx. He's not academic. He's not gifted in any way. What if vision therapy doesn't help? I feel more indecision in his case. :grouphug: hugs to you. Whatever you feel (and it can change from moment to moment) is valid and right for you.

[Dobela]

I don't have a child with autism. I do have children with special needs. I can remember sitting in my son's pediatrician's office and crying as we went over the latest test scores. His pediatrician just gave me a hug and said that my response was very typical. In a way, the tears were from relief. Finally I could say that the struggles were not because I was a bad mom or a bad teacher. So much pent up emotion about all the struggles so far. But then there was the grief - the hard parts were not necessarily going to change and become easier. I wasn't going to wake up tomorrow and this all be a dream. You know, I don't want everything to be more difficult for my child. I want both of my children to have a trouble free life - especially where learning and growing are concerned.

 

My brother will be 40 next year. He has struggled his whole life. We knew he had learning disabilities but no one really knew why he did what he did. My mom noticed issues as early as 6 months old. My mom kept thinking he would just grow up some day. About 5 years ago he was finally dianosed with HFA/Aspergers. My mom is still grieving because she so wanted to believe that if she could just do a, b or c that my brother would change. But those things she so desperately wanted to change are the characteristics that are the spectrum ones. The ones that are now not going to change.

[SweetMissMagnolia]

zach has asperger's and adhd with other issues I think (not yet diagnosed with anything else)---first it was shock....denial........for a long time........then come out ready to fight to find something to help my child....still sometimes I wonder if the dx was right LOL...then something will happen and I'll say NOPE it was right...but wonder if he has "this" too LOL.... it was very hard to hear for me..... :confused:

[ReneeK]

I was happy to have an answer knowing it wasn't just my imagination. My daughter looks normal on the outside-so we got a lot of grief from friends and specialist because they kept telling me she was okay. Which we knew it was more than what they were seeing. I kinda felt like-see I told you so! She had a stroke and they blamed it all on that. They found out that she has a deletion in her chromosome and is the only one that the geneticist know of. She also has MR, PDD-NOS, and SPD.

 

Also, it made me see that this is something that we will have to deal with the rest of our lives. It won't go away. It made me sad for her. Not knowing what her future holds. I think knowing is a good thing. Its just the first few weeks when you find out that are the hardest. Then those horrible days it hits you.:grouphug:

[rieshy]

Grief was my response- even though I didn't recognize it for what it was at first. Friends told me all sorts of things- out of love- that didn't help. I had to just learn to appreciate the sentiment behind the unhelpful things people said and not let what they actually said bother me.

 

I started blogging to process it all. This post was looking back a few years on the process I initially went through dealing with his diagnosis.

[rafiki]

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[Paisley Hedgehog]

nm

[ravinlunachick]

My son was diagnosed with autism this past September, at the age of 3 years 8 months. It was hardly a shock at all; we'd seen this coming for a LONG time, and it was actually kind of a relief to finally have it out there and official. He'd been getting Early Intervention and speech therapy since 18 months, and had never said a word, so we'd been trying to figure out what was wrong with him for a long time. I had realized that he would eventually be dx'd that way about a year earlier. It took my DH right up until a couple days before the formal results were in to accept it.

 

Having tunnel vision helped me tremendously in the beginning. I still can't think too far down the road; we just take things as they are for right now. I try to focus on the stuff he CAN do and I have to let plenty of well-meaning advice from people who know nothing about autism roll right off my back.

[elise1mds]

I wrote some stuff on my blog a few months back about the grief process that I went through after I got the diagnoses for my son. Part of me was happy to finally know, but the other half of me was completely heartbroken that there actually was something "wrong" with my kid. It was a completely weird feeling, much like you describe, because I didn't want to be happy that there were issues to deal with and yet the knowing, like you said, opened doors! I think it's normal to feel what you're feeling. At least, I hope so. If not, we can be weird together

 

:grouphug:

[kimnc]

to op - :grouphug: :grouphug:

My initial reaction was shock, followed by a long grieving period. Eventually, I found a local support group for parents of special needs kids; that was a lifeline.

I recommend seeking out a support group, or at least another mom with a similar situation that you can talk with.

 

In all probability, the people who gave you those replies have not been through something like this.

Give yourself some breathing room. It's ok to cry. The grief is normal.

[Critterfixer]

My ds7 was diagnosed as a "probable high-functioning autistic" at two years of age. No specific learning problems were identified at that time, he was simply too young for much testing. My initial reaction was tears--but not tears of sadness. I was smiling, because I knew that I had a child who would not have to go through the pain of being different alone, as I did.

I admit to being overwhelmed with the amount of information thrown at me that day--I could have filled a large three ring binder with all sorts of things that I should do to "make him more normal." I was offended by that a little bit. I'm not a huge fan of "normal" as I see it all around me.

I was furious reading over the pamphlet that I was supposed to give to his teacher for the other children in the class to help them understand that my son was different and might not go to college, but that they should treat him as if he was one of them. It was so patronizing and demeaning I'm sure I had to open the windows of the vehicle to let the steam out.

I don't know if my experience was typical, since it comes from being on the spectrum myself. I'm going to be handicapped in teaching him but I hope that it is not going to be as much of the blind leading the blind but more of a cripple making sure that my son doesn't have to lame himself as much as I did.

[Guest momk2000]

:grouphug:

 

My dd was dx'd with PDD-NOS last year. I cried at first (and still do sometimes at the end of a tough day). I cried for her, for the difficulties she had faced since birth (and for those to come), noone able to give us an answer until then (at 9yrs). I cried at the sudden realization that dd had a real problem, this was real now. We were not given the typical, oh it's nothing, she'll grow out of it. The diagnosis brought dd's problem to life. I cried and cried.

There was also that sense of relief. We finally have an answer for our dd. As previous posters have mentioned, this opened some doors for her to receive needed help.

[Ibbygirl]

I cried non-stop for 6 weeks when my ds was diagnosed with profound Autism. It was really a mourning period for me when I realized that he wouldn't have the childhood I had imagined he would have, but instead that he was going to have to struggle all of his life. It was HARD. I wished that I had the power to take it from him, but I was so powerless. After that period of crying, I one day just stopped and pulled myself together and was like, "okay, what do I have to do to help him?" and have been doing that ever since.

 

:grouphug: Lots of hugs to you OP and all of you that have special kiddos. It is a hard and lonely road to travel, but there are definite blessings that you would never have had otherwise. My son has taught me more than I will probably ever be able to teach him and I just cannot imagine my life without him in it. He's the most amazing person I have ever met. The bravest... and the most joyful. :)

[Celia]

Thank you all so much for sharing your experience. I really appreciate hearing about them, because it seems most people around me think that I'm over-reacting, and just can't understand. This isn't a response I was expecting from myself either, but it's comforting to hear that others have reacted the same. Thank you.

[moriah]

My ds was out of control as a young child. I could not get him to sit and play with me. When I took him and got a diagnosis at 3 1/2, and we were immersed in therapy, over a period of time I lost most of my friends, some behind my back said that it was due to a lack of parenting. (nice huh?)

Once I had my daughter who is typical and realized that a typical child goes through milestones with little or no assistance (I'm not saying I don't spend time with her but I also didn't have to spend 3 months teaching her how to ride a tricycle) and I think people just have no idea the work involved or what it would be like if you had to help your child get through milestones. Another thing, I could not figure my son out until an ASD person helped me. That feeling of helplessness was really a killer.

If I had it to do over again, I would more quickly stop trying to discuss it with anyone who hasn't experienced it. Other suggestions? Maybe find a support group, get a therapist, see if anyone is willing to do emailing here, think of it like a marathon instead of a hard sprint, make sure you are taking care of yourself physically, ask lots of questions regarding therapies on this board and other ASD sites and learn to seriously lean into God.

My son is 10 yo now and he is a wonderful child. I love love love doing school with him. I have learned to enjoy "the now" instead of planning out my child's future. I am actually grateful because although I have made plenty of mistakes, I feel that I did my very best. I have a relationship with my children that makes our home a true refuge from life's bumps and bruises.

I will pray that you get through your grieving quickly and easily!

[AngieW in Texas]

My oldest was diagnosed ADD-inattentive when she was 11yo. I already knew she was ADD when we went for the appointment. We only did the testing because we were ready to do a medication trial and we had to have a formal diagnosis for that. I was surprised that ADD-inattentive was all that she was diagnosed with because I was pretty sure something else was going on too. She had a lot of Aspie-type quirks, but I wasn't sure if she was Aspie like my middle dd or if she was just shadowing.

 

She's 18yo now and wanted to try medication again, so we went for testing again. This doctor was MUCH better and gave a full report that completely nailed my dd. She got a very clear picture of my dd during the testing. Now she is diagnosed Asperger's, ADHD (both, not just inattentive), and Axis-II diagnoses deferred. The deferred part is possible OCD. She has some OCD symptoms, but the doctor wasn't sure it was enough to be clinical.

 

The diagnosis is actually good, especially the Asperger's part. The college she is going to in the fall has a free social skills program set up just for students who have been diagnosed Aspie, so she'll be able to take part in it.

 

I'm still waiting to get a report back on my youngest who went for testing with the same person last week. She's the one I've posted about here who has been having anxiety attacks, depression, and sleep issues.

[pfamilygal]

Utter relief. I'd been saying there was a problem with Nate's reading forever and everyone just told me to give it time. We went through three phonics programs and I was just told to try harder and be more consistent.

 

Yeah, he is severely dyslexic and dysgraphic. When the folks at Scottish Rite told me I wanted to cry with joy because at least there was an answer. And now, with a good O-G program we are finally making progress.

[NittanyJen]

First of all, hugs to you. I'm so sorry you had to go through the whole diagnosis process; hearing a diagnosis for your child is a rough process at one point or another, particularly when it isn't something where you can pop a pill or get a shot or just wait it out and have them "all fixed." (see later).

 

When my son was dx'd with 47,XXY (a diagnosis that actually underlies a lot of kids with milder autism diagnosis, though I would not place my DS on the spectrum) I was both enormously, overwhelmingly relieved-- I finally had a name for his challenges, vindication that I was not nuts or being hyper about his struggles to keep up, and a kind of path to follow up on-- and frustrated. Most of the disorders that go with XXY can be remediated over time, in terms of academics and social issues, but the medical stuff will have to be "managed," and I can never "fix" him. My "perfect" baby can name every piece of equipment in the typical PT clinic.

 

It has now been three years since his diagnosis, and with that distance, I have come to realize that he doesn't need "fixing." In fact, I have realized that if a fairy godmother came to town and offered to remove all of his extra chromosomes and make him a "typical" 46,XY guy, I would have to refuse, as it might also remove his fantastic, amazing way of viewing the world, without conferring a whole lot of benefits that we can't give him over time. He isn't a problem to be solved; he's a human being to be respected for who he is.

 

I just guest-taught a class, teaching the XXY topic, and I explained to the kids, my son isn't an XXY boy; he is a wonderful boy who happens to have XXY.

 

As to the responses of others-- man, yes, all over the map. From the wonerfully sensitive, "I'm sorry you had to hear that diagnosis, was it difficult?" (non-judgemental or assuming; just sympathetic and open to how we actually feel) to the, "So when does he turn gay?" (standing broad-jump off of a cliff to a wrong conclusion. I don't actually mind when people ask IF or HOW the extra X affects him-- if they're wondering, I'd prefer they ask! Not many people our age had great courses in genetics or embryology while growing up, so it's understandable).

 

The responses that bug me are, "Wow, you can't even tell that there's anything wrong with him!" ARGH. There is nothing "Wrong" with my son!

 

Jen

http://hillandalefarmschool.blogspot.com/

[amo_mea_filiis.]

I was pretty shocked when my dd was diagnosed. I got over the shock quickly and moved on with life. It wasn't until she was asked to leave an autism social skills group that I lost it. She was too "normal" for the autism group, but too "autistic" for the regular group. This is pretty much where we are now. I really hope that the social skills group through the cyber school will help.

 

I was relieved when my son was diagnosed. It started with sensory processing disorder, severe expressive language delay, hyperkenesis, and disruptive behavior disorder (fancy names for ADHD in a toddler). Since then we've added PDD-NOS, ADHD, ODD, and some medical issues. As time went on, the Drs who had originally diagnosed him started questioning it, and stopped helping me advocate for his school needs. In a few months, he's meeting with a team of Drs to sort out his diagnoses, retest, figure out what's really going on and properly diagnose him.

[Sara R]

My oldest (age 13) just barely got diagnosed with Asperger's. I'm relieved. It makes communicating about her social abilities and her education so much easier. I finished grieving along time ago about her not being the fantasy child that I dreamed of when I was pregnant with her. She, too, was a difficult toddler, who grew into a sweet but quirky child, and then puberty hit. :svengo:

 

To maybe calm your worries about your younger child, let me tell you about the speech development of my children. My oldest child's speech development was pretty average. She had 50 words at age 2. My second child had only about 7 words at age 2. However, my 2nd child was on track for speech development by the time he was 3, and speaking completely normally by age 4. And he is a bright, bright kid with nothing wrong with him academically. He won his school spelling bee this year. He's normal socially too.

 

My third child was a little behind in speech at age 2 as well, but she is also completely normal now. She's the one with the coloboma that I talked about in the other thread.

 

Anyway, I'm just saying, your younger child might be totally fine, even with an older sibling on the spectrum, even with a bit of a speech delay. Of course you should pay attention to your mother radar and get him checked out if you are worried.