My son has been found to be borderline at risk for Aspberger’s. He is very high functioning. I’m wondering if you had resources that you thought were better then others? Right now he’s lacking in pretend play and problem solving. He’s about to turn three. I am just starting to get to resources but feel the need to start helping him NOW. Not whenever everyone else gets around to it.

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  1. Penelope Trunk
    Penelope Trunk says:

    I’m really sorry that you are facing a hard situation. But I have been there — right there, with the early, possible Asperger diagnosis and a pregnancy at the same time. You can get through it. You need a lot of help. I hope you have a good support system. But also, the government actually has a lot of support in place – you should try to get to it now, before the next baby comes.

    I’m giving you broad advice because I don’t know your situation — are you working, are you indpendently wealthy, are you a single parent, etc? All these factors make a difference.

    The problem you have identified — no pretend play — is not small. It seems small, but it’s big. So you need to treat it seriously, and you have only a short window to treat it. It’s like crawling — either the kid learns to crawl and gets the brain development benefits of that, or he walks and that window passes. So address the pretend play full-on.

    Here’s a list of things to do:

    1. Early Intervention
    You need to get your son into Early Intervention. Every state has it. It’s money earmarked for kids who are delayed. It’s a lot of testing and paperwork, but there will be an agency near you that wants access to the money, so they will help you.

    If you are in NYC or Chicago, I can help you figure out where to go. If you are not there, you will develop a network on your own. But for right now, maybe just shoot in the dark. It’s better than not shooting at all.

    2. Get a diagnosis.
    If your son has a diagnosis, he will get a lot more attention (state money) than if he does not have a diagnosis. In big cities it is pretty common for parents to go after a diagnosis early just to get the services for their kids. Don’t worry about the label. It’s just a label and if it turns out to be wrong, there’s no harm. In general, though, I have to tell you, the early diagnosises are not usually wrong, which is why NYC doctors are willing to give them. (You can keep the diagnosis off your kids’ school records if you want. I don’t recommend it, but I’m telling you this in order to convince you to get a diagnoiss. You’ll have a much much easier time getting the kid services.)

    Even if you live in a rural state (I do– Wisconsin) there will be one doctor in one city that specializes in giving early diagnoses to kids for what your kid is facing. Forward thinking doctors everywhere understand the importance of giving a diagnosis in order to get to funding. So the doctor will make his or her best guess. My son had a diagnosis at 2 and it was spot-on. Most early diagnosis doctors will do it at 3. If you call around — universities, child psychologiests, school social workers — you will find someone who knows the name of a child neurologist or child psychologist that diagnoses early in your area.

    3. Ask for everything.
    You should aim for special instruction, speech therapy and occupational therapy. Special instruction deals directly with pretend play. Speech therapy is not just for speech production (like a lisp) but also for pragmatics. Look up pragmatics online. Lack of pretend play turns into lack of pragmatic skills when a kid gets older, so push hard to get pragmatic speech theapy now. You can get a speech therapist AND a special education insturctor to BOTH have SEPARATE sessions working on pretend play. You will have to fight for that, but it’s worth it. You will fight way better now than when you have another kid to deal with.

    You might not get the occupational therapy, but there’s a chance you will. A kid’s job is to play. Occupational therapy for a kid teaches the kid how to play. There is a reason your kid does not do pretend play and it’s likely related to sensory defensiveness or vestibular issues. Google these terms. You can toss them out to your case manager down the line in order to get your son occupational therapy.

    You will also qualify for a family social worker. Take the offer. You have too much on your plate to deal with. Every mom who faces this has too much. It’s too much. That’s why the state pays for a social worker. I had one for two years while I tried to cope with facing that my kid had special needs. That’s how long it took me to get out of denial. And that’s normal. That’s why the social worker is there. The social worker can also help you with the stress of managing the system.

    4. Read things in small chunks.
    I know I’m telling you a lot. I odn’t think you’ll write to me again because you’ll be overwhelmed. That’s what I do when I feel overwhelmed. I stop taking in information. It happens to me with my son all the time, and I’ve been doing this for nine years.

    So read this email a few times, and do it in steps. You will be fine. But not now. Now you will be a wreck. But every single mom who has a special needs kid has been a wreck when they get the first signs. It never comes all at once, it comes slowly, and it’s painful. So there is an army of moms who have been there and understand what you are going through. They will be a great support system for you. Don’t isolate yoursellf.

    Good luck!

    Penelope

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