Feeling like I'm the Only Advocate in This Family for My Child....

You just described the process, it is what it is. There are so many things that could cause the issues you just keep going at them until you get it right. You really wouldn't want it any other way because the wrong diagnosis, the wrong therapy means wasted time.

The other thing is it really is best that one person is the primary advocate. Think about everything you have learned over the course, is there actually a upside to two people learning all that just so you can have a discussion?

The biggest problem I had with my ex was not that he wasn't advocating as well, it was he was doing nothing to remove the burdens he could deal with. Driving kids to sports, helping me with our younger child. Okay cleaning up after himself would have been nice.

Andy wasn't diagnosed until he was six, wouldn't want it any other way.

Have you had her formally evaluated? A true evaluation should last several hours, and may need more than one day to complete.

It sounds to me like she has Asperger's and Sensory Processing Disorder.

You are doing the right thing by your daughter.
Let me say it again, you are doing the right thing!
It can be so frustrating, exhausting and overwhelming having special needs kids. It can seem like you are talking to brick wall after brick wall and no one is there to back you up. Keep talking! Don't give up until you get people to listen! You are her advocate. You have to keep going because she can't get the help she needs herself. You sound like an amazing mom who has done so much for her already. She's in early intervention preschool, you are getting her additional therapies, you are getting her help.
The big concern I see is your husband's lack of support. It may be because he doesn't know what to do, and you are doing a great job of advocating, so he's letting you take that role. The problem is the "what if"'s. What if something were to happen to you and you weren't able to advocate for your daughter anymore? He would have to step up and take that role, and at this point he would be lost and your daughter would suffer. I think you need to sit down with him and really talk about this. You need to make sure your daughter is taken care of just in case. It's like life insurance. You have it just in case but hope you never need it. Your husband needs to understand what is going on and at the very least be a support for you.
Have you tried just googling "special needs support groups" in your area? That's how I found a couple groups here. Good luck!

What you need to get is an Advocate for your daughter. A person who will go to meetings and speak up for you. Call your PC doctor and get information. I did alone also for my son. Don't give up....my son is now 22 and a professional photographer. His special way of seeing things has made him a wonderful career.

Have you ever sat down calmly with your husband -- without your daughter around, and when you are NOT tired or frustrated after a long day of working with her -- and told him what you told us here? "I feel very disappointed and I feel that you're inactive in working on our child's problems. You pay the bills for all these therapists, and that is wonderful and vital, but I feel you don't fully understand the depth of her problems and what it takes out of me, every single day, to be the parent of a child who has so many needs. I feel that you don't believe she really has issues because she's not diagnosably 'sick' with a disease."

He should be going with you and your daughter to the pediatrician; to the OT; to the psychologist; for any services she gets. He needs to sit through an entire OT session, an entire session with a psychologist, etc. More than once. These professionals need to talk to HIM directly, not to you with him just in the room, and express how much your child really needs. I would tell him that you need him to take the time off work to do this because you are at a crisis point and feel this is affecting your marriage: You feel you and your daughter are the team here and he is not part of that at all.

He probably does not get that sensory issues are real problems, even though they are not "illnesses". Many people do not consider anything that doesn't involve bleeding, a missing limb or heavy medication to be a real problem. He may be among them and may confess, if you talk to him calmly about it, that he just doesn't understand all the fuss and that "she's just being a kid, she'll outgrow it." Find out if that's how he feels and then get him on board to see the professionals in person.

I was a single mom with a daughter like this, so I definitely get the "feeling alone" aspect too. It's really frustrating to get diagnosed, because it does take many doctors' visits, time, and energy, plus UNLIMITED patience!!!

Here are some things you may not have thought of...
Easter Seals- there is one in our area that I hear FANTASTIC things about, and they have support groups for you, her, the family, etc. as well as classes... the list goes on. They also have OT, etc.

Hippotherapy. There is a horse therapy program in Winfield called FTEA (Friends for Therapeutic Equine Activities.) My daughter rides there and they are AMAZING. So many of her sensory issues have been helped thought this alone!!!

Getting a neuro-psych eval- this can help with learning disabilities, and whether you use that for an IEP/504 later for her in school, it definitely helps YOU as a parent learn how SHE learns and how to best approach her. We have seen Dr Appleby in Oak Brook, but I hear there is a fantastic woman at the Clarus Center in Warrenville (and we plan to do another eval with her this summer since it has been a few years.)

There is an excellent neurologist at CDH, Dr. Sperry. He works with special needs and Tourette's kids, so if you haven't gotten and EEG, etc and things and she "spaces out" and you have ANY concern about her physical brain function or possibility of petit mal seizures, etc. He is THE guy to see. (We've been through 4 neuros and he's amazing.)

If you haven't done anything dietary, I would definitely try that as well. We started off using the Feingold Program (feingold.org) and LOVED that it increased her attention span and really helped curb some of the aggression we would see when she was overstimulated. Red #40 was a BIG problem for us, as were apples-- of all things! We kept going and are now gluten-free and white sugar-free, and it has been a real journey to learn what food triggers she has, but WORTH it! (I have a food blog with out story and recipes, etc. here: www.chickiepea.wordpress.com.)

I don't know if I can really help with getting your husband on board, other than explicitly telling him (when calm, not in front of her, and when you have lots of time to talk....) specifically what you need. Not "get on board" or "wish you'd care" but a list of things to do... like: I really need you to call and make these appointments and then go with me to them, etc. Men work better with concrete things to do, not vague things. Then email him or make him a written note with them after you discuss it.

Whatever you do, don't give up on digging for answers. The biggest thing for me was answering "WHY" and it took me 7 years to get a diagnosis at all (PANDAS) and another 2 to get a dx of Lyme Disease. My daughter is 90% better between treatment for Lyme, dietary changes, some homeopathy, chiropractic (highly recommend again!), horse therapy, etc. Yes, we do/did A LOT, but it does get better as you learn more and more.

I did not look to see where you are, specifically, but there is also a homeschool group in the St Charles area that has a lot of kids with sensory issues and other "invisible" special needs, which I have found to be a wonderful community for us. I can give you that info by private message if you would like. I'm actually happy to talk with you about anything I mentioned here :)

You're doing a great thing by getting her help. YOU are her best advocate, and better to have caught these things now and fought for her than let things spin out of control for her later.

Hugs,
M.

PS- Another great book is "Is This Your Child" by Doris Rapp, MD. It discusses allergies and how they affect our children. I found it really riveting and it's an easy read (not too medical.)

hang in there - it is so incredibly tough - but advocate as hard as you can as often as you can. let go that your husband isn't helping (advocate) and instead go on dates when you can - so you can refuel emotionally to keep advocating for your daughter - or get a babysitter to give your self a break - so you can refuel to keep advocating.

whatever you do - keep advocating - let every new achievement your daughter has renew your fight - it is the only way to get through it!

I had that same issue with my son now 5 years old. I fought and fought to get answers. At one time I even got a diagnosis of sensory processing disorder from the OT before he was 2 but I knew there was something else going on. I knew in my heart that my kid had autism. I told everyone, the evaluators, OT, ST, and PT included but no one would listen. Finally, what I did is take him to a developmental pediatrician. No joke, upon just meeting us the doctor looked at me and said with 100% certainty that my son is autistic. The weight was finally lifted off of me, it felt great at the time that someone finally recognized that he didn't solely have sensory issues. The developmental pediatrician even apologized that I had to go through all I had to and that my son was initially diagnosed incorrectly. I say even if you are the only one advocating for your son don't let that bother you, keep doing it, get pushy if you need to, the well being of your child depends on it. I would definitely recommend taking your child to see a developmental pediatrician and bring all reports you've received with you. The only thing different with your daughter may be sensory issues but it's best to know for certain that things aren't being overlooked.

I'm kind of dealing with things myself as far as my daughter's hyperactivity is concerned. I have her a special diet that seems to be raising eyebrows, but it's my gut feeling that it'll help. My husband is pretty supportive, but doesn't seem to fully "get it". I'm with her 24/7 so I know what I'm dealing with. This is just a first step that I'm taking, hoping it works. I pray that you find the answers and the support that you seek!

Two excellent books I'd like you to look into are "Raising a Sensory Smart Child" and "The Out Of Sync Child." They are incredibly detailed, but incredibly easy reads for parents of children with Sensory Integration Disorder whether they have Autism Spectrum Disorder or not.

I think it would be very, very helpful for you to have your daughter formally evaluated in an independent outside evaluation by your own specialist such as a Developmental-Behavioral Pediatrician. Your local Children's Hospital should have a department that can help you set up an appointment. Once you get a formal diagnosis, that will legally entitle your child to services through the school and the school will be forced to perform a formal evaluation free of charge to you.

To get things started you can file a written request formally asking them (the school) to do a formal evaluation regarding your daughter and specify that your concerns are related to Sensory Integration Disorder. If Autism Spectrum Disorder is also a concern for you, include that in the letter. You can do this now even if the school year is coming to a close. It doesn't matter if there's summer vacation. Get the ball rolling now. I promise you won't regret it.

Yes - we were/are in a similar situation. Behavioral/eating issues/sensory, etc. I did a ton of research and once presenting that to my husband and going to loads of specialists he finally got on board 100%. It is much easier when everyone truely understands and accepts what is going on, especially all the work you are doing to help your daughter is draining both on an emotional and physical level. Perhaps you can have one of the specialists talk with your husband and explain what is going on to let is sink in. It is hard to accept when your child is not perfect.

good luck to you.