Youngest daughter and possible Asperger diagnosis... (schools, medication, evaluation, disabilities)

[CarolinaMom79]

Originally Posted by NJGOAT

Does anyone have any tips on how to explain this to young siblings? So far we have pretty much just commiserated with them and told them that she has some problems making good choices and understanding things so we are taking her to the doctor for some help. They seem to understand, but we feel like we are putting an inordinant amount of pressure on them to be "model citizens" in order to avoid setting their sister off. For instance, both of the older two love Ninjago and like to act it out. They don't hurt each other or break anything. However, with the younger one around, she mimics what they are doing and always takes it too far and it is hard to get her to stop. We try to separate them or limit the youngests exposure to that kind of thing, but we can't escape the feeling that we are punishing the older two for being kids so we can avoid an issue with the younger one.

I actually have this problem regarding my son's behavior to my husband and parents. (Even adults can just not get it.) I urge you to research non-verbal communication disorders- also known as a pragmatic speech disorder. (I can't recall off the top of my head the exact wording the psychologist gave to the disorder when he diagnosed my son... but it can be a language problem alone although it is frequently found with children who have autism/asperger's).

This type of communication disorder has nothing to do with the verbal part of language. (My child is quite verbal with people he likes and has a verbal advanced vocabulary, in fact.) But the non-spoken parts of language... gestures, tone of voice, jokes, sarcasm... those kinds of things- may be difficult or impossible for them to interpret without help. It just doesn't come natural to them.

Here's an example: My son can't interpret teasing. Even when he understands it's just play at first... often he forgets that it's a game and he's in tears after a few minutes. He can't remember that it's just a joke. Or, for another example, if anyone presents with a loud voice- my son will think that they are yelling at him. (It doesn't matter how many times we have explained to him that this isn't true.)

So, it is possible that your child may (and I have no idea.... but here's a theory...) suffer from this communication disorder as well..

Perhaps your daughter can't get the signals right. And she takes the game too far.

As far as her siblings go, I would suggest that you stress how very much you love each of your children and how they are all unique in their own ways. This makes each child different, but not better. I would tell the older kids that perhaps this youngest's brain may be a little different than theirs and as such she thinks differently and she feels differently but she's just as awesome and wonderful as they are.

I would tell them that sometimes, your family might have to do things a little differently than other families because of her...because she may need that. Just like a blind person may need a cane to walk or a deaf person may need to learn sign language to "speak". These are adjustments that your daughter needs. And that's okay.

I would tell your children that all families are going to be different than each other, sometimes by a little and sometimes by a lot, and that's okay- that's just how the world works. And if it wasn't like that, the world would be dreadfully boring. And no matter whether these changes are for just a little while or for a long while, everything will be fine. Just like it always is.

[eastwesteastagain]

Originally Posted by sfcambridge

I'm sorry to hear the issues you have been dealing with. May I say your summary and observations of your child's behaviors is excellent and would be useful to print out and save for future physicians to read.

I would still make an appointment at CHOP... even if it is a year in advance. You ALWAYS want to find the best place near you, and if this develops into something that continues to concern you, you will be happy to have the appointment. I would also call once or twice a month to see if they get a cancellation, and ask to be placed on a cancellation "list".

Good luck to you. You are doing a great job. It is very exhausting.

I, too, am so sorry to hear what your family is going through, NJGOAT.

I second sfcambridge's post. Your detailed and specific observations will be immensely helpful to the diagnostic team and throughout whatever treatment your daughter may need.

Anecdotally, one of my girlfriends was also told the waiting list to see a developmental pediatrician at CHOP was over a year long; she was able to get in within three months when they had a cancellation. She has been thrilled with the team at CHOP. It might make sense to get on the waiting list and then cancel yourself if you decide you don't need the appointment after the other evaluation (think of it this way, if you cancel, someone else will be able to get in off of the waiting list much sooner than they had hoped).

Regarding how to talk to your other children about what their sister is going through, it was suggested by the team at CHOP that my friend explain to her other children that everyone's brain works a little differently, and there are some things that their brother doesn't understand the same way they do. When things come up during the day, she will gently remind them that brains work differently. I am hopeful that your diagnostic team will be able to give you more specific feedback for how to help your older kids understand what your youngest is experiencing. Best of luck to your entire family.

[NJGOAT]

On the topic of CHOP we have remained on the list and will be contacted if there are any cancellations. The group at Saint Peter's was also highly recommended, but they are a bit of a hike if it will be something that needs to be done regularly. We figured step one was just getting an evaluation and diagnosis and then we could go from there. If she is diagnosed, the long term plan would be to go to CHOP for her care unless the group at Saint Peter's blows us away and then we will make that work. However, CHOP is consistently rated to be the most advanced in terms of PDD care and treatment so it would seem that is the best option regardless.

I appreciate the advice on talking to the siblings. So far we have avoided characterizing her/her brain as being "different" as that seems to be a more permanent label when we are not 100% sure that it's the case. We discussed telling them that and it would be the way we would approach it going forward once we got a diagnosis. So far my in-laws are the only other people in the family who know what we are doing. After my wife and I they are the next most frequent caregivers and my MIL was one of the people who was suggesting that there might be something wrong. We haven't said anything to my parents yet mainly because we don't want to say something until we know for sure.

One of the harder aspects as my wife, at least initially was blaming herself. Between the two of us she was the one who was pushing to have a third child while I was pretty happy with two. We decided (and I remind her that it was "we") to have a third and then that would be it. Now with the current issues my wife has been implying that she feels guilty or that she is responsible for what we are going through. While she is correct that had she not wanted a third there wouldn't be a third, it was still a decision we made together. We are pretty much over that thought process as it doesn't lead to anything constructive, it is what it is and we have to deal with it. I do know that deep down she still blames herself. It mainly manifests itself when the other two are denied doing something because of the effect it would have on their sister. I think she kind of feels as if "her choice" has taken something away from the other two kids. Like I said, it's not a dominating thought and one I imagine many people and mothers in her situation would have.

It's becoming important to us to have "normal" moments with the other two when we have the opportunity, but then I feel bad if we are leaving the youngest out. For example, my parents want to take the kids to the boardwalk for the night to play games and go on the rides. There is no reason the youngest can't go other then that we are afraid of her reaction and possible meltdown that would basically deny the other kids from having a "normal" evening. So, we have chosen not to bring her along and she is going to stay with my MIL which is a challenge my MIL has decided to take on (we tried it for a couple of hours this past weekend and things went OK, so we'll see). I feel that it's the best choice overall, but I can't escape the feeling that I am treating the youngest like the proverbial black sheep and it kind of kills me to do it; especially because I'm actually looking forward to a night with the family...without her.

[eastwesteastagain]

Originally Posted by NJGOAT

I appreciate the advice on talking to the siblings. So far we have avoided characterizing her/her brain as being "different" as that seems to be a more permanent label when we are not 100% sure that it's the case. We discussed telling them that and it would be the way we would approach it going forward once we got a diagnosis. So far my in-laws are the only other people in the family who know what we are doing. After my wife and I they are the next most frequent caregivers and my MIL was one of the people who was suggesting that there might be something wrong. We haven't said anything to my parents yet mainly because we don't want to say something until we know for sure.

I probably didn't communicate what I meant clearly. I wasn't saying that your younger daughter's brain is different, I meant that all brains are different - yours, mine, your older kids, your younger daughter. I can definitely see wanting to avoiding any labels especially until you have a handle on what the difficulty is. Not in the realm of special needs, but with my emotionally dysregulated clients, we used the same model of how different brains process information differently. It steers right past the idea of normal/abnormal and into the realm of individual differences, if that makes sense?

I am going to bow out, as there are many people in this forum who know a great deal more about special needs than I do and will likely be able to give you better advice. Just one more thing: this is not your fault, it is not your wife's fault. It just happens. I know rationally you both know that, but emotionally it may take awhile. Forgive me for being forward, and feel free not to answer, but have either of you considered seeing someone to talk through your own feelings about and reactions to all of this? You are both dealing with a ton, and it might help to have an objective ear, especially in the interim where your social support network doesn't really know what you are going through (which makes total sense to me, BTW). Sending you good thoughts.

[CarolinaMom79]

I would feel it's okay to have activities that don't include your youngest child. There are probably plenty of activities that you enjoy (or even your other children) that your youngest wouldn't enjoy being a part of. In time, you can figure out how to tackle this issue so that everyone is satisfied. (When your youngest is better able to communicate her desires, doing so will be easier.)

And don't worry about how it will affect your older children. No matter what the diagnosis (or even if there is a diagnosis). If she is different, your children will learn empathy. They will learn tolerance. They will learn to love others who seem different than them.

It might cost them a little (they might not get every typical childhood moment that you dreamed up for them, but hey... those things were never a guarantee in anyone's life anyway). But what they'll get will be a life so much more richer instead.

I doubt- in the full run of life - they will ever look back for one moment and wish things were different.

(Although in the meantime that might not be the case... but how many kids would also trade their baby sisters in for a puppy or i pad, if given a chance at this age.. as well?)

[CarrieM]

While you are waiting to get into either St Peters or CHOP, look into St Christophers, also in Philly. Sometimes they have shorter waiting lists.

To address the meldowns - For my son at that age, his meltdowns were often a control issue. He didn't know what to expect, so he didn't know how to react. If you (or your wife) can make a schedule for the day, possibly with visuals for your daughter, then she'll know what to expect, and eventually you won't need to return her to 'home base' in between stops.

To this day (he's 19 now) my son will not transition from one activity to another without being pre-warned. If I pick him up from an afterschool program, I have to tell him the evening's agenda before he will leave with me. When he walks into school, the first thing he does is check the day's schedule. He can read, so he even asks for an 'agenda' of the day/weekend before he'll cooperate with even something as minor as getting dressed.

So if you had a basic daily schedule form, and put pictures - the target logo on the block for 10am, the ShopRite logo for 11:30, etc.... it might help with transitions.

Because these kids tend to adhere to their routines as if the routine was the source of oxygen, it's a good idea to get them out of that strict routine, life is full of surprises. The day my son had a two hour meltdown, because a road flood caused us to have to detour around a block, I knew I had to do this. I started by planning surprises. Only the biggest, bestest, most favorite things/places/activities were 'surprises' at first. And I had to give him several days warning. Started on Wednesday: "On Saturday we're going somewhere, and it's a surprise". Repeated that over and over, every day. Saturday came, and it became 'After lunch we're going to the surprise'. The first few weeks, I tried to do this at least twice a week, and it was only the best of the best. His absolute favorite food for dinner. His favorite places (The jersey shore boardwalks, chuck e cheese, etc). After 6-8 weeks of this, we started to tone it down. Maybe not as exciting as a boardwalk, maybe just a playground. A few more weeks, and it was a department store. Later, it was much more mundane errands. Post office. Bank. Dry cleaner.

Now, many years later, I can plan stuff on the spur of the moment, and give him no warning more than 'we're going out later, it's a surprise'. That's all it takes to take him away from his routine without him batting an eye.

[nana053]

Brilliant on the surprise strategy. I stole that to send to my dil.

[nuala]

I identify with your wife on the sensing of something being "off" - and that feeling alone was enough to finally schedule an evaluation (when my son was almost 5). We, too, had someone to compare him, too, - his older sister. Overall behavior was much less severe than what you describe in your OP and my son was dxd as high-functioning. Stores used to be major tantrum places, too, but connected with him getting his toy (a bribe) and then wanting to go home to play with it, not wanting to visit some other stores, or he'd drop on the floor of a store even at 4. Eventually, too, we started the pre-warning, the visuals, the intensity is much less now at 7. The transitions at 18 months started to get brutal - putting pants on, for example. Your daughter lining up objects is typical, we got fancy zig-zag lines. Also there was no interest in playing with figures (role-play) - the truck was just the truck, the house was the house, even though his sister was able to make him pretend play for a while. Just recently he started drawing people figures in conjunction with the action that he likes to draw, - but it's not about the people or their feelings, it's about the people needed to be objects of shooting or so.

The 2 years of emotional classes at school did help - he's more interested in people' moods, even though on a simplistic level (red - angry, yellow-silly, green- happy, blue - sad). Definitely, we were told that a visual schedule he will need always.

I also identify with your wife about questioning why all that pushing for a child was. I pushed for a bit sooner than maybe my body needed to recover (19 months difference between the kids). But in the end, the origins don't matter, the present matters. I have this lovable, huggable boy, and when I am 100% tuned in with him, it's a wonderful world between us. When I start being embarrassed, when I allow people to make me feel that we have to behave in some "appropriate, normal" manner, - then the meltdowns happen. I have a wonderful boy here with his own understanding of the world, and I have to stop being influenced of whatever the concept of normal is - ours is normal, maybe different from others' but still normal.

[germaine2626]

I taught Early Childhood Special Education for over 30 years so I have a background in this area. I am so very impressed with all of the wonderful comments and suggestions for the OP. I even learned something new, planning surprises to help children learn that it is OK for their routine to change. Wow, what a great idea!

To all of you: thank you for being so helpful. I'm sure that many of your specific suggestions will greatly help the OP and other parents who read this thread.

[Ruby Wilfong]

My daughter Naomi Grace is now 24 years old. She came into the world with an APGAR of 0. Yes a 0. She was resussitated 3 times over 33 minutes, but she finally made it. At 12 hours she began having seizures. I won't go into all the details, except to say that the seizures seemed to be the result of a aneurism in her brain (due to anoxia in utero), which was causing the bloodflow out of her brain to be restricted. We were just so grateful that she was alive. We took her to Shands in Gainesville, Fl, where we saw Dr. Parker Mickel, a famous pediatric neurosurgeon who was from the Mayo Clinic up north and happened to be teaching his new techniques at Shands. After doing his own tests he found that the aneurism had vanished. He told us that it has happened before, but was still a very rare thing. So after a second bout of tests to confirm the earlier results, be said that she would be fine, with exception to the seizures, which she had a good chance of out growing. He told us to take her home and treat her like a normal baby. So we did. She passed all the usual 1st year milestones and was very healthy. The seizures slowly stopped and at 18 months they weaned her off the medication. She progressed rapidly and was soon above the "normal" range of development for babies her age. As time went by her neurologists at Nemours in Jax., Fl. were amazed at all she could do. By 2 years she was totally potty trained. She did this on her own. She informed us that she wanted big girl panties and would not wear a diaper anymore. She could count to 20 without making a mistake, then count to 20 by 2's. We did not teach her to do this, she just started doing it on her own. She knew all her colors and would tell you that black and white were not colors, and she was right. They are "neutrals". She could read and crudely write her own name which stunned everyone. By 3 years she could read and do math on a 1st grade level, and was physically progressing in motor skills and language. The only thing I can say that we as her parents did in all of this was that we never "baby talked" to her, and would do our best to explain anything she asked about, which was a wide variety of subjects. She loved ballet, and for Christmas she got a video and matching book on the Nut Cracker and after watching it once and reading the book, she knew and understood the whole thing. She was obsessed with it. She had to have more information about the dancers, the choreographers and even the director and everything else having to do with it. She had to have her own dance outfits and ballet slippers, and even tried to dance en pointe. At first we thought it was all so wonderful, and in many ways it was. We called her "Our Amazing Grace", because she was. Then, she got a double ear infection, and was on high doses of antibiotics. But the meds didn't seem to be working. So another round of a different kind of antibiotic, and she got well. She continued to progress rapidly. Having a conversation with Grace was like talking to a miniature adult with a lisp. Then without warning the seizures returned with a fury. The neurologists couldn't explain it. Back on medication again. But it didn't work well, so they increased the dosage, still not working. So they changed to another kind, still no luck. Then they added a second medication, and the seizures continued to get worse, so they added a third, and later still a fourth, and the seizures slowed down to 8 or 10 times a day. She became like a zombie, not playing or doing much of anything but staring into space. So they changed it all again, and she did better. She was playing and doing much of what she had done before, just a little more slowly. It was like she was being very careful with every movement with her body. But other than that, she was much her old self. As that year progressed, she began to behave a little strangely and I talked to her doctors about it, and they all assured me that they didn't see anything unusual going on. Her seizures were better, and they just thought I was imagining things. But I was growing alarmed. I knew something was wrong, but I couldn't explain it to the doctors. Instead of reading her beloved books, she began scribbling in them in red crayons. Only red ones. She became aggressive with other kids, and threw temper tantrums, and scribbling on the walls. Then suddenly it all stopped and she was herself again. The doctors said it had only been a phase. I was relieved. Life went on and all was fine. Then about 3 months before her 4th birthday, she had been giving a tea party with her dolls in her room, and I heard her singing to them, then I heard a loud crash, and I ran to see what happened and she had tossed her table over in a fit of temper, and was crying. She hardly ever cried, ever. I tried to console her and figure out what had happened, but she just kept shaking her head "no". Then a couple days later, she came to me all upset and kept saying, "Mama, I can't know it!" This stunned me because she didn't talk that way. This went on for several days. Temper tantrums and screaming, and yelling at me that same phrase, "Mama, I can't know it!". So I took her back to the neurologists, who told me again, it was a play for attention, normal, not to worry. But I was worried! I knew something terrible was happening to her and no one would believe me. I went to see our family doctor to talk to him in private about all this and he put me on tranquilizers. Said the problem was me, too much stress over the years, or perhaps I was the one needing attention. He nearly had me convinced it was all in my head... but he was wrong. 10 days before her 4th birthday, almost everything we knew about Grace vanished. She stopped everything. We had to put her back in diapers, and watch her constantly. She became very violent, distructive, she stopped talking completely no matter how we tried to get her to say anything, anything at all, but speech was gone. She played in her own poo and would spread it on the walls and furniture. She began eating strange things, like pinecones and shoe strings, buttons and the eyes off of her stuffed animals. She would break things constantly. The seizures were back with a vengence and she was hospitalized over and over again. More tests and doctors saying they did not know what was wrong. So we looked for other doctors all over the country, did everything we knew how to do. But no one had any answers. So they set up another round of tests and we were told she had "Late Infantile Autism". So I tried to learn everything I could about it. Went to seminars all over the country trying to figure out why she didn't seem to fit what the books and specialists were saying. As time went by the violence began to subside, but I was wary... having seen her change dramatically before. She was affectionate, but on her terms. She would kiss you or touch you or hug you, but you could not do these things to her. When she was 6 we went to see Dr. Temple Grandin, who is a high functioning autistic woman who gave lectures on the autism spectrum. She told us that Grace had Landau Kleffner Syndrome, so we went to Rush Hospital in Chicago to see Dr. Andre Kanner, who was the only doctor in America who could dianose Landau Kleffner Syndrome. It didn't take long. LKS leaves a "signature" on EEG's that is distinct. There's nothing to be done about it, but at least we know now what was happening to her. When she was 7, she suffered 3 heart attacks and ended up in a coma for 12 weeks, and when she finally woke up, she was partially paralyzed. Her left side no longer functioned, and she stopped growing. But she was alive.The road from there has been long, but over the years she has learned how to scoot around on her bottom, feed herself fingerfoods, drink from a sippy cup by herself, and she plays with her stuffed animals and dolls. She has become physically strong on her right side and can hurl that cup, and everything else like a major league baseball pitcher, and believe me, her aim is good'! She is very affectionate and now she will allow you to kiss her too, but not so much the hugs. She has a sort of language all her own that we have learned to understand for the most part. She makes excellent eye contact, and tries so patiently to make you understand her, with her sounds and eyes and body language, but most folks have no idea what she's trying to say.
She is so sweet, and kind and funny, and happy most all the time. She is interested in everything going on around her and enjoys watching tv in her room. She has come a long way. But the doctors still say they don't know what exactly happened to her. There is no official diagnosis other than the LKS, and all we know is that with every year that she is still here is another year they said she wouldn't have.
I don't allow the doctors to do any more testing on her anymore except for the labs to check her levels. Physically she is very healthy, even though the seizures are still with her.
No, this isn't the life I wanted for her, but she is a happy little girl. Her life is simple and filled with lots of love.
I don't know why this happened to her. I don't know why these things happen to any child. What I do know is that life is so very precious, and we should all make the most of what we have. Don't take anything for granted but cherish each moment, every day because you just don't know what could happen. Try not to live in fear, but to embrace what you have and take joy in it. Happiness is what you make it, Grace is proof of that.
So what I want to tell you is that you have hope. There are so many things available to you now than we had back then. Doctors and researchers have learned so much in the last 20 years, and there are more and better services and treatments as well. I believe that to everything there is a purpose.
And lastly I want to share this... Someone asked me once if I thought it was fair or right what had happened to Grace, and all I knew to say is that I still have her. She is alive, happy and well. If she can find joy in her little world, with everything she has been through, and all that she has lost, then why can't we? Life doesn't come with a contract or promises of all things going right or well. Be grateful for what you have, and enjoy all the little things, like that unexpected kiss, the eye contact that says so much. The smile that lights up a face. These are the important things in life. Knowing that you are loved, and can give love in return... because when it's all said and done, it comes down to that old saying that most of us have heard all our lives... The things of this world don't mean a thing because you can't take it with you when you go... but the love you give freely, the joy you leave behind you and the knowledge you shared with others is more precious than gold.