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How can I prepare?

710 views 12 replies 9 participants last post by  jmom 
#1 ·
I'm a frequent lurker in this forum but just today have worked up the nerve to post
I'm having a lot of concerns about my middle child and dh and I have finally decided that we really do want to talk to somebody about him.

I scheduled an appointment with our doctor (who is a family practice doctor and sees me and all three children) that was supposed to be on Friday, but her office called to reschedule for two weeks from now
It really frustrated me a lot because I'm very concerned about my son.

I ended up calling early intervention today and was referred to my school district because ds is turning 3 in June. The lady I spoke with at early intervention seemed a little grumpy I called. When she asked why I was calling I told her it was because ds doens't make eye contact or talk to people other than family and very close adult friends and he withdraws from other people -- and she just sort brushed that off when I told her he's not in daycare. There's a lot more going on with him besides just that but she just cut me off there and told me to call the school district.

I called the district and spoke to their evaluation coordinator, told her the same things about ds and she said that she'd schedule him for a group evaluation. They only do them monthly in the summer so I have to wait about 3 weeks for the next one. She told me they'll do standard hearing and vision checks, and then they'll have a team to do developmental checks too.

Ok I had to say all that above because it's really weighing on my mind and I need to tell *somebody* besides dh, who though concerned about ds too seems to think that I'm overreacting.

But my question is how should I prepare for the doctor's visit in two weeks and the evaluation in 3 weeks? I have a list of concerns that I've been compiling for the doctor (no eye contact, going into a "shell," horrible tantrums, hand flapping, agression that he doesn't seem to understand, etc). Is there anything else I should take?

Like I said I've been reading the threads here for awhile, and as was suggested in another post I sent off the questionaire from the autism research institute, and we've gotten the results of that back. Should I take that to the doctor or just wait? I feel like I should just wait and see what she says. My husband and I are planning to go to the doctor's appointment together so we can both talk to the doctor.

For the evaluation by the district I was planning to leave the baby and our older DD with dh so that I can take ds alone. What should we expect. Will I be able to stay with him? Should I take or prepare anything? The person from the district told me it takes about an hour. She said group evaluation but I'm not sure how many other children to expect. ds does not really do well with other children. She told me there would be hearing and vision screening, as well as speech evals (he speaks pretty well but I'm not completely convinced he'll be willing to speak during the eval)

I'm going to get rambly if I go on, so much on my mind. If anyone has any insight I would really appreciate it. Part of me thinks that I'm too worried and that everyone is just going to tell me that he is normal and just quirky and shy. But part of me worries. I want to be prepared...
 
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#2 ·
I do not have experience in some of the areas you are describing---but I wanted to send you some support via the internet.
It sounds as if you are doing all the right things. My child was in EI (Early Intervention) since the age of 3 months, so I am not familiar with the group setting. BUT--I would call the person that you scheduled this event with and ask them a million questions about what to expect. Or speak to someone else from that same office.
Don't let the grumpiness of a few rude people get you down. Just to share my own personal experience: when my dd was born (who has SID and was g-tube fed for roughly two years/oral issues/non verbal, etc.,and she had severe reflux), I just instinctively knew something wasn't right after less than a month of her birth. I took her to six different pediatricians over the course of three months and finally found one who would listen and who then referred us to a ped GI (she had severe reflux as a baby--and the feeding problems happened almost from day one of her life) but those other pediatricians just made me more and more frustrated. I also got on line and found a million boards about babies with similar problems and asked every question I could think of--and learned as much as I could about EI and signed dd up. I guess what I am saying here is that I learned to be very strong for the sake of my dd, and I learned how to push people in their professional lives to get what I needed for dd. I am usually somewhat of a doormat when it comes to myself--but I learned how to be tough and assertive for dd's health and well-being.
It may take you a few closed doors and some rude people, but the lesson to take away is to make sure you are doing what you know is best for your ds to get what you know he NEEDS.
You are off to a great start. If you don't like the appt. dates you've been given, call back and insist to speak to someone else who can help you navigate the system and get what you want.
Good luck and best wishes. Remember: trust your instincts, that's why they're there!
 
#3 ·
The arm flapping thing raised a flag for me. Arm flapping can be a milk allergy/sensitivity signal. Have you tried removing all dairy, wheat, gluten, etc. from his diet? If not, it may be something you might want to research. Just an idea, I know it worked wonders for my older dd. I was TOTALLY freaked out when my dd started arm flapping at age 1, since I used to work in special ed prior to children, it really signaled "autistic" to me. After removing diary from her diet the arm flapping stopped. Since then we have removed wheat and eggs sporatically depending on her behavior.

Hope that helps.
 
#4 ·
I don't have any experience with the group evaluation setting, but another idea might be to videotape some of the behaviors that concern you so that if he doesn't do them during the eval then the therapist can still see them. Remember though that unless there is a developmental pediatrician or a psychiatrist doing the eval the I don't think they will give you a diagnosis of autism (as I think you are suggesting). They will be evaluating a variety of areas of development to measure where he stands. They will also be evaluating how any delays or behaviors impact on his ability to get an education. Even at the family practitioner's office I don't think he will be able to accurately diagnose ASD; family practitioner's just don't have that training. Good luck with the evals and, as others said, be prepared to stand firm and the practitioner's that you disagree and want further assessment by other practitioners.
 
#5 ·
I took my ds1 to one of those group screenings done by the school district last summer. There was a questionaire to fill out, and then he went around to the different areas to be screened. The areas were cognitive, speech, hearing, vision, PT, and OT. I was able to go with him to all of the different areas. I had him screened because of sensory issues and he ended up getting a more formal evaluation by an OT. He qualified for a developmental preschool this past school year and got OT once a week in his classroom.
 
#6 ·
Thank you so much for your encouragement and support mamas, it means a lot to me. I feel very overwhelmed right now. I made this appointment for ds to see the doctor over a month ago, and her office calling to reschedule just makes want to fall apart. Now it will be over six weeks since I first called her. I thank you so much just for listening.

I am a pretty shy person myself (one of the reasons I kept putting off looking into ds's behaviour - he's just like me, right? I said to myself) but I realize that I need to advocate for him and be strong.

The lady I spoke to with the school district is sending some information and a form for me to sign in the mail, and when I get it I think I will call and ask for a detailed description of what will happen at the eval and also what specialists will be there, that's a good suggestion.

Thank you Karry for sharing your experience, that sound similar to what the eval director described to me and it makes it seem much less scary to hear from another mama!

Milkbarmom - I have not tried eliminating dairy lately -- I did dairy free myself for awhile when he was a baby because he was so very high needs, but he just kept screaming so I gave up, heh. I have been seriously considering it again, and have been looking over some GFCF information online. The entire thought of it scares me, frankly. I love milk and my family loves milk. But I've been trying to cut down on milk as I've been contemplating cutting it out completely. We've completely taken milk out at supper time. If it can make so drastic of a difference maybe it is something we need to do for him.

chann96 - the videotaping is a good idea. I don't really think he has autism, but I do think he may be somewhere on the autism spectrum. He speaks very well. A *lot* of his speech is parroting, but he can and does speak his own thoughts pretty clearly. He doesn't really do anything like stacking items or lining them up. He does rock a lot and make little noises. He has horrible tantrums, but then in the last couple of weeks there haven't been as many (again making me wonder if I'm overreacting). But there just seems to be something "not right" about him so I don't know.

I respect our family doc a lot and I feel that she respects us. I think that if I'm concerned and she thinks it's warrented, she will help us get a referral to someone else, though I'm not even sure there are any developmental peds around our area. I am hoping that the doctor and the school eval together may help get us closer to some answers or assuage our fears. At least it's a start, but it's something I am very, very nervous about.

Thank you again mamas, for your listening ears and wise words.
 
#9 ·
Quote:

Originally Posted by ~*SugarMama*~
Just wanted to offer my support. You already know that you and DS are in my thoughts but I felt like a bit more support would be a welcome thing right now.
Brit you are so wonderful, thank you so much
 
#10 ·
Whether she thinks it's warranted or not, if you are concerned seek help. It's the very special doctor: family practice or ped who recognizes things early enough to help early enough. It's usually parents who recognize their children's problems. An OT is what you need. Baby crying.....
 
#11 ·
Quote:

Originally Posted by mamaverdi
Whether she thinks it's warranted or not, if you are concerned seek help. It's the very special doctor: family practice or ped who recognizes things early enough to help early enough. It's usually parents who recognize their children's problems. An OT is what you need. Baby crying.....
I feel like we have a good rapport with my doctor (though we don't see her very often) and she tends to err on the side of caution, so I think that she will be willing to make a referral because we are so concerned. I hope she decides to do a behavior scale too maybe, to asses for herself. But I will be sure to ask her about a referral to an OT - I am sure we have some of those in town, though I don't think we have any developmental peds. An OT would know what to look for and where to start though right?
 
#12 ·
We are just going through this right now. We are further along -- just got an assignment from our school district.

I know it is exhausting.

I bought a notebook and just kept a journal of concerns and activity. The journal helps keep me sane when every new therapist chimed in with other problems like holding a pencil or scissors properly and I was just screaming inside "but I just want him to talk with us who cares about the scissors." I could go on and on but to your question of how to prepare I would offer the following.

Two books we bought from Amazon helped us prepare:
How To Compromise With Your School District Without Compromising Your Child: A Field Guide For Getting Effective Services For Children With Special Ne
-- this was invaluable in walking us through the process and while it often focuses on negative things that have happened to other parents it helped us prepare. It is an easy read. I felt like it walked us through the process step by step and alerted us to possible pitfalls or mis-steps. We want to advocate for our child. In the end our district was completely supportive.

More Than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder -- our son's primary issue is communication and we are working our way through this book. It is expensive. But it is easy to use. And as a busy parent -- goodness -- it's hard to plow through a lot of material. This book gives me a hand in that regard. And it has been invaluable in helping us to "do something" while we are wading our way through the diagnosis stages.

If your doctor can refer you to an excellent neurologist for a work up we found that perspective most helpful. The developmental pediatrician was not as helpful but that may have been just the person and not the profession.

Best of wishes, stay strong, EHH
 
#13 ·
We've been on a similar path with DS for the past eight months or so. One thing that I just figured out... The services through the school district (at least in our case) are about preparing him for school. They're not working on helping him to be an overall happy, healthy kid. It's really about helping him negotiate kindergarten. DS has some sensory issues that don't relate to school, so they aren't really addressed. I need to find my inner warrior to get him the OT services he needs.

Most likely you'll come out of this eval process with some sort of plan from the service provider. It'll probably be very concrete (i.e., "child will answer social questions appropriately 3 out of 4 times"), so ask for clarification to understand why these particular goals are important. And ask yourself if they're in line with your own concerns. Feel free to add your own...even after you're home and you've mulled over the plan for a couple of days.

Also, don't be afraid of a melt-down during the eval. If your DC really can't handle other kids being around him, better that the team sees that in action and incorporates that into the plan.

Sounds really frustrating to be ready for action and keep having to wait. PP's idea of a journal is so cool. Creating that journal can make this waiting period so productive. One question that sometimes put me on my heels was something about what DS likes, when he's most calm, stories about playing happily. Those stories give clues just like meltdowns give clues.

Hope this helps! Best wishes to you!
 
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